Yes, for the last eleven months since the flare up after catching a virus. My brain would feel like it was exploding between 3-5am every night. Wake up feeling severe fatigue. Always feel more normal at night as if my days and nights got reversed.
@@kathygreen6043 yes are you hypermobile I've found a link with all this with hypomobility Asperger's ADHD I was born like that though before CFS or fybromyalgia
Chronic fatigue syndrome is terrible. You try to stay awake but once the fatigue hits you, you just cannot. Even when you sleep and rest your still exhausted. It's not funny and it's horrible. We're not lazy at all like a lot of people think. Our bodies just don't go like everyone else. Once we use our energy for the day we don't have any energy left.
What I find really fun is when the fatigue is too much to move, but you still can’t fall asleep. Then your body starts to hurt because/while you’re not moving. Ahh, good times. 🙃
@@gypsypath1 I'm in excruciating pain everyday and every night. I have rheumatoid arthritis, osteoarthritis, scoliosis, chronic fatigue syndrome and that's not counting all my other diagnostics, medical conditions, disabilities and limitations. I do the best I can even though I'm in excruciating pain all the time. I've had 49 falls already and I'm slowly loosing my ability to walk completely. Believe I don't wish this on anyone. I have never been lazy my whole entire life. Chronic fatigue syndrome is horrible and not fun at all.
@@kimberlydavis5034 Exactly. My motto has kind of become “laugh or cry.” I have to try to force myself to find humor every day so that the hopelessness is not the only thing I see.
@@gypsypath1 Oh believe me I completely understand. I try using humor as well to brighten up the darkness of my medical conditions, disabilities and limitations.
Firstly thank you for addressing this so well, it’s rare having a doctor who doesn’t dismiss m.e. but also, things such as GET and CBT are NOT treatment options, GET has been proven to be dangerous to M.E patients even if you’re “mild” and are able to do GET at the start it can end up permanently damaging your body and CBT is not a treatment it should only be suggested as a way of coping with symptoms better not curing symptoms, this is clearly stated in the new NICE guidelines. :) I was completely healthy until the age of 6years old when I became ill after a bout of shingles, I was admitted to hospital with an ataxic walk and mild but constant fatigue, I was there for 6 weeks, 6 weeks of hell, I was told I had munchausens syndrome and functional neurological disorder and I was forced to do intense physio 7am till 7pm, in this time I was called lazy, attention seeking and stupid and told its all in my head my parents also got told I’d start wetting the bed within a few weeks for more attention and to leave me alone till I stop faking… I left hospital, severely underweight unable to hold my head up, unable to swallow unable to walk unable to sit up in constant pain with severe fatigue, my parents then straight away admitted me to a new hospital of which i instantly got a ng tube and iv fitted the treatment was better but not great as we still had to fight for my health but I was diagnosed with cfs and the few nice drs reassured my parents it was not In my head, but they still didn’t understand the severity and just assumed it was just fatigue I was there for 6months then on and off for a couple years after. I’m now 14, 15 in December and still have the ng tube and need a wheelchair to get around they permanently damaged my body because they blatantly and ignorantly blamed my physical illnesses on mental health disorders. something I have learnt and try to educate is that chronic fatigue syndrome is the wrong name and addresses the illness wrongly (and also has a lot of stigma attached) I call it Myalgic encephalomyelitis because chronic fatigue is ONE SYMPTOM not the illness, the fatigue can be so severe that you feel as though you have to try put all your effort into keeping your heart beating, but that’s a symptom, not the illness it’s self. I now have been diagnosed with M.E, POTS, EDS and MCAS and even though I’m only 14, I’m just surviving I do not have a life. Having m.e is like living in a body that is already dead and you’re just dragging it around, The average person with ME scores as more disabled with a lower quality of life on ‘quality of life surveys’ than those with multiple sclerosis, stroke, diabetes, lung disease, organ failure, and cancer. I don’t feel like I have anything to live for because I am so ill and I’m so much pain all the time and there is absolutely 0 true medical support. I’ve now developed depression due to being so isolated and stuck in bed all the time but I can’t admit that to medical professionals because I can’t have mental health on my record or it’ll be much harder to get support for my physical illnesses when I need it. having ME is horrendous and I appreciate this video because it is the first video I have seen of a medical professional being so respectful and understanding of chronic illnesses, it means a lot and I wish there was more doctors like you around, thank you so much.
Sorry to hear about your situation. Also thank you for sharing your personal story. This is a familiar story. Hoping you are able to get treatment for this condition.
My heart truly goes out to you for all you've been through in your short life. Reading your story and the depth of your knowledge, I would've never guessed you were only 14 had you not stated it in the beginning. I'm 43 and was diagnosed only 6 or 7 years ago. Legal stimulants such as Adderall and caffeine are the only things that have kept me functional and from losing my job. My body crashes at the end of almost every single workweek, and I use my vacation days as fast as I get them. It really sucks spending over half of my precious free hours in bed. I truly. hope the pandemic brings more awareness and research into this debilitating neurological disease. Thank you for sharing your knowledge and experience. 🙏
Sir, thank you for posting this video! Now I want every doctor that said nothing was wrong with me OR said it was all my head! I want all those doctors to have ME/CFS for just ONE week and see how they would change their “opinions”…!!!
It would be fine to have it for a week. You would be able to catch up o n everything over the next few weeks, your friends will still be there and so wi ll your job. I think yo u lose your life and your dreams when you get M.E. Imagine if you had cancer and even your family thought you were lying, some might not say it to your face but it wou ld be obvious everytime theybgot annoyed with you for your lack of participation and contribution.
@leondevries478 Firstly it returned to me a sense of innate connection to the life force of all of creation. This condition was extremely isolating in the first couple of years. Social interaction and conversation was just debilitating for me, I felt overstimulated, overwhelmed and couldn’t make sense of anything, find words or follow a chain of thought. Family and friends thought I was crazy and simply refused to engage on the topic of me/Cfs. I felt very cast adrift and alone and afraid of the future and too ashamed and attacked and dismissed to try discuss it with anyone. Secondly I suffered terrible debilitating headaches 2-4 days out of every week, where the region of my brainstem felt so hot, tender to touch and swollen, now I might get a day of that every few months. My crashes now last 3/4 days not 2/3 weeks. The TMJ, tinnitus and vertigo are sporadic, and a warning sign now, not constant accompaniments to my days. The 10am nausea is rare now not daily. My eyes are no longer red, inflamed, watery and painful all the time. My daily all over body pain is gone, only returning with crashes. My heart rate is much more stable as are my cognitive skills. Fatigue is much improved. I CAN SLEEP! No longer that awful wired and tired. I’ve become extremely aware of my bodies responses to situations and people and remove myself swiftly when bells go off. Sounds no longer feel painfully loud, emotional lability is less, light sensitivity and wildly fluctuating body temperature control are now sporadic. Digestive issues much improved. I was taking a mushroom cap smaller than the size of my pinky fingernail, once a week, probably over a sustained period of about a year and less regularly later as symptoms improved. I made sure to eat 3 Brazil nuts everyday for the selenium after reading research regarding the malfunction of calcium gated cells in me/Cfs sufferers and the link to mitochondrial dysfunction. From the word go when I got sick this felt electrical to me. Much research on mushrooms capacity to induce neurogenesis. Just pulled out of a 3 day crash. Haven’t taken mushrooms in months as I’ve been feeling good, will take a microdose this week. A microdose does not give you a high…it’s not the point. I took one Ivermectin 12mg on the second day and one on the third. This sounds whacky but my last 3 crashes I’ve taken a 2 tablet dose of Ivermectin. I feel instant improvement the following day. I trawled through tonnes of research when the state of Uttar Pradesh started using IVM as treatment & prophylactic in C19. The research coming back from Dehli’s largest hospital showed that patients treated with IVM did not develop long covid, which to me seemed the same as me/Cfs, further research from FLCCC doctors was enlightening. I thought it worth a try as I was in Zambia and it was easily available everywhere with no script. Coincidence of not? I’m so vastly improved this past 18 months. Best use DuckDuckGo for research as Google censors all the IVM research. The trigger for my illness was a series of viral infections and fevers over a 2 month period in the Phillipines, untreated as I was on a tiny island with no doctor and too sick to make it to the mainland. Lots of promising research going on with IVM in treatment of all sorts of tropical viruses. It’s ability as an anti inflammatory able to cross the blood brain barrier interesting. I stopped seeing medical doctors shortly after my diagnoses as under the circumstances it looked like a sure path to bankruptcy, having no insurance and realising how little they knew and having innate distrust of the pharmaceutical industry and endless prescriptions. I grow my own veg, eat simply, avoid processed foods, alcohol and sugar.
The problem is, doctors, especially from my experience in the NHS, tend to use ME/CFS as a catch all diagnosis WITHOUT ruling out any other differentials. Yes, they may do a basic blood panel, then if that is negative you are labelled as having cfs, or fibromyalgia, or anxiety, or worst of all conversion disorder ; especially if you happen to be female with perhaps a history of depression. I have had viral meningitis 3 times, and during one episode I had seizures, leg paralysis and autonomic instability ; what did the doctors do? They slapped a label of FND and conversion on me BEFORE even doing an MRI of my spine or brain. I had all the symptoms of some sort of acute flaccid myelitis, yet they didn't even think to rule out any acute, potentially life threatening diagnoses before labelling me as effectively hysterical. I am still in shock to this day at the collective medical gaslighting that happened during my admission and at their refusal to listen to their patient. Their decisions were led by sheer arrogance and bias, and if you advocate for yourself or question their decisions ( any lay person would have the common sense to know if someone has a seizure and is paralysed that a scan needs to be done) this just fuels the narrative that you are 'crazy'. I have been left with severe weakness in my legs, memory loss, myoclonic jerks and symptoms of an autoimmune disease and also ptsd from medical trauma. I can't sit in front of a doctor without shaking with fear. Tell me doctor, how can we as patients trust you? How can we trust that we will be treated with respect, dignity and most of all receive the correct diagnosis and treatment when there is a culture of doctors hung up on labelling everything as psychological? Is it right that as patients we have to psyche ourselves up before talking to our doctors, that we have to censor ourselves in fear that you will not take us seriously? If we cry in your office through frustration or desperation you write in our notes ' patient was emotional and anxious'. Since when were normal, justified human reactions medicalised to mean you are hysterical or mean you are suffering from some sort of personality disorder. It is terrifying to think that if you turn up to A&E with chest pain, for example, you will be labelled as anxious, and a cardiac cause will be missed? They say we should work in partnership with our doctors. That is bs. I have never come across a doctor who is not intimidated or put out by an informed patient who advocates for themselves. ME is a real, devastating illness, yet how many patients are being diagnosed with this when nothing else has been ruled out? There is a whole host of diseases that could be the cause, and often times things like lupus or lyme are dismissed because the patient is seronegative, but you only have to read the journals to know that negative autoimmune panels do NOT rule out an autoimmune etiology. I once asked a doctor if I could have seronegative lupus ( I have many of the symptoms including the rash) and he looked at me like I was insane. The long and short of it is this ; please don't assume all your patients are lying or malingering or has some deep rooted trauma that is manifesting in physical symptoms. Please don't assume we are ignorant either. Most of us have the capacity to read and research ; in fact you can never underestimate the power of a patient who is so desperate and tired of suffering to be their own detective and find the answer. Even worse for those vulnerable patients who do not have this capacity, god only knows how many are being misdiagnosed.
Firstly sorry to hear about your experience. You raise many valuable points. Thank you for sharing your experience. There are valuable messages for doctors and patients in there. Thank you.🙏🏼
I'm sorry you had to go through all of that. PTSD from medical treatment is real. I only had a bit of what you described and that was awful. I wish medical schools had a course in humility, so they could feel comfortable saying, "I'm sorry. I don't know what is causing these symptoms yet" Rather than misdiagnosis and gaslighting patients. It will get better. They will find more answers. Hang in there 🤗
My aunt was DX with this in the 80s after mono. I was DX with pots CFS/ME and Lupus in 2015. My aunt has since passed away. ME just wiped her out. I wish she was here to see the medical developments. Im sorry to those with long Covid. But im glad to see a renewed interest in CFS/ME. Thank you for seeing us. Its awful.
I was misdiagnosed with depression even though I insisted something was making me tired and weak. I went from having an active life to nothing. So I became depressed. I sought help and treatment for the depression and felt better with welbutrin but I was still weak and fatigued. My psychiatrist told me to go to my primary and discuss CFS because it was not a mental condition. So I did. I took all my records back to my pcp and asked for help again. I was told I was depressed!!! My son took me to another clinic where I was diagnosed with EBV....I had it for a year. Now I take nuvigil to function daily. But all I can do is go to work. No social activities. No outings. I'm glad more providers are recognizing this condition. Thank you for spreading awareness.
I was diagnosed with CFS including POTS in 2020 after a small stroke. I went from being fit and active to being partially disabled and exhausted to the point of collapse. I AM making progress and my determination that I WILL fully recover keeps me going through the dark days. Cutting out sugar, as much stress as possible, zero alcohol and getting loads of sleep/rest definitely all help.
How did you sugar detox, i have tried and tried, i know its bad for us. Any useful tips thankyou. suffering every day with this condition and it just makes you crave the sugar to get a lift of energy. What an awful condition it is.
I’ve been diagnosed by two doctors with fibromyalgia and I think CFS is in the mix. I’ve had massive fatigue (and some of the other symptoms you’ve mentioned) for two years. I did have non-symptomatic Covid in Aug 2020; diagnosed by PCR coincidentally when I was hospitalized for DKA (long Covid?). Winter of 2022 I lost 18 pounds and could barely dress in the mornings. Here’s my take: I’m DONE with doctors and lab tests and suggested treatments. The very act of chasing down a definitive dx and effective treatment can EAT YOUR LIFE up. I prefer to accept it and adapt to it. 🎉 Life is more than a diagnosis. 🎉
❤my feelings exactly. Having developed M.E in 1991. Not feeling well enough to visit the Doctors surgery I have had no diagnosis . A visit to the Doctors due to the onset of Fibromyalgia I was told that it was the most likely cause of my pain but no test were offered and so I just manage each day to do what I can or just bed rest after a few little jobs in the kitchen. 😢
I'm self diagnosed because I don't trust doctors to know what is going on with me since I have a history of anxiety and depression as well as complex PTSD. They'll label me mental. Other comorbidities include scoliosis with spinal arthritis, osteoporosis, food and environmental allergies. There you have it. Other things like ssri withdrawal, ascension symptoms and long COVID can complicate a diagnosis, so I don't have the trust or time to run to the doctor when all they want to do is prescribe another useless and dangerous drug. I'm self treating with stress reduction, meditation, magnesium glycine before bed, frequent rest breaks, limiting draining activities and relationships, keeping cool temperatures at home and especially in the bedroom, dressing in cotton, avoiding summer heat, gluten and lactose free diet(allergic), good nutrition, no alcohol, drugs, caffeine, prescription meds. Nature helps when I can get out now that it's cooler. I'm blessed with a darling husband of 35 years and our kitty cat. I'll take my blessings and am grateful for a previous life of travel, athleticism and creativity. Let's not give up on ourselves. Loving compassion to us all.
I was stricken with this syndrome in the 90’s, and am thankful I had a physician who didn’t dismiss what was happening, despite ruling out one condition after another. As horrific as Covid-19 is, I can’t help but be excited about the renewed attention and research toward CFS due to long Covid. I recovered quite a bit of my functioning, but the specter of relapse haunts me. Thank you for explaining this complex topic in an understandable way.
@@sublimestudi000 @LOLsnickersnort agree would be good to hear about insights on recovery. In my clinical experience I find in the initial stages of recovery it is really important to keep the environmental stimuli under check especially if stressful and gradually pacing oneself with increasing activity. Gradually getting a feel for ones boundaries.
@@PsychiatrySimplified do you treat me/cfs patients? I have seen long haul clinics in NYC and quite literally no single doctor I spoke to knew what was going on. Are you taking consultations?
Grateful for your work on this, my partner has M.E. (and the corresponding CFS) and has a new GP who, being imported from the UK, refuses to address it as anything but psychosomatic. There are literally no other available GPs in the area. She is therefore reduced to addressing individual aspects of her health outside of her previous M.E. diagnosis (I won’t go into detail but it’s a reliable diagnosis). I mention all of this only to highlight how important it is that this type of work is not only done but more widely noticed in the medical community itself. Again, grateful for your obvious dedication to this important work.
Yes, thank you for mentioning that! I noticed it was in the list too. It has been widely discredited and removed from most official guidelines, last I heard. Derived from a study (PACE trial) that was found guilty of heavy confirmation bias among other issues. There was even a campaign and backlash from patients who were involved in the clinical trial, claiming that the trial results misrepresented their experiences and falsely indicating there were improvements. This type of treatment does more harm to patients than good. I find it extremely confusing that the one thing known about this condition is fatigue worsens after activity (post-exertional fatigue) and yet with Graded Exercise Thereapy patients are recommended to exercise and do the exact thing that makes the condition worse. What?!
@@thepaintedlady4637 although - its not recommended - its worth considering your own reaction to physical exercise. For me - I started timing acitvities - walking flat before I would get teh ME reaction. I kept walking area flat to avoid hills. For me I could build up a tolerance ofa 40 minute walk every day. I find resistenace exercises the ones which will trigger relapse. I think having some level of exercise is important - if you can do it. If not - develop a toelrance to it. Do what movement you can safely, repeat it for 2 weeks, then incremetnally load it by a small fraction - progressive overload. The guidlines were for encouraging mood changes via exercise. the writes did not understand that the things that bring you joy and contentment are the very things that cause the problem for sufferers. Insidious.
@@gingerindian1141 💯 agree! I do some things intentionally that I know will set me back a day or two because those things bring so much joy that it’s worth it! Swimming in the springs Light work in the garden A walk in nature All worth a two day set back for me! The alternative is to curl up and die inside
Nice video Doc. Was pleasantly surprised watching this. In my 22 years with this illness, and being quite severe (nearly dying on multiple occasions), I've had some terrible experiences with psychiatrists in hospitals, completely not understanding MECFS and recommending dangerous outdated therapies. Was nice to see you actually do for the most part, understand what the illness really is, and that it isn't a psychosomatic condition etc. That unfortunate and outdated information and the neglect/abuse that goes with it, is still very prominent in mainstream medical circles. So much of this is correct. Only thing I'd say is, as often mentioned in the community, that CBT and GET are often far more harmful than good. But yes you are correct in that the PHYSICAL aspects of the condition need to be improved if they possibly can be, before any increase in activity can occur. CBT is really only helpful for people to "learn how to cope" with the illness, rather than actually helping anything physically. I've been pushed in hospitals at my worst, barely able to move, to try to 'exercise' in the rehab gym. My limbs wouldn't work and would just shake instead of functioning. The entire team started to say to each other "he's just not cooperating" and staff/dr's/psychs were getting angry and blaming me for not improving. It was truly one of the scariest things i'd ever experienced. Internally I am one of the most positive and driven people you could ever meet (and quite a perfectionist admittedly, lol). But my body simply *cannot* keep up with the 100 project ideas I constantly have. Thanks for the video and actually doing the research to understand this condition Dr Sanil, it's rare and very appreciated to find. Hopefully you are able to influence other medical pro's to help understand what's really going on with us.
“”the neglect/abuse that goes with it, is still very prominent in mainstream medical circles. “”- yeah so true. The well educated including the so-called medically qualified doctors also rudely pass comments saying it’s in your head, you are imagining things and especially in my place they also show faces and put you down by criticising you especially the doctors, that you are lazy. It’s just emotionally hurting to meet the shallow minds who criticise you when you actually go to them for a cure. May be we got this for a reason, to help the human kind in some way, probably to bring more awareness.
I've been there. A CFS therapist asked me to fill in a time table. When I took it to her she said " you are not doing anything". She thought me to be lazy. Prior to been Ill I pushed myself physically, working a lot of hours as a single mum of 3. I also had a lot of mental challenges. I had glandular fever in my early teens and so did my daughter. My thyroid packed in and I was aware of weird hormonal things happening. When told It was a mental health condition I could say No it's a physical condition. My theory is the body uses up something during trauma. Eg L carnitine or other amino acid or enzyme and that's the cause of cellular energy not transferring.
the truth is in the stats. and that stats establish that doctors are genocidal, homicidal, greedy peverts in need of their own body pile. they prey on the patients, steal their money on behalf of ther bosses and spout orthodoxies out of textbooks written by religious fanatics in Rome. nobody is honest; truth is what you pay for; might makes right and if you can't pay your rent your friends, family and colleagues will kill you. who cares about CFS, the entire discussion is fraudulent.
@11:42 Removing toxic elements, like alcohol or other drugs, is good advice. Always. At the same time, these toxic elements are self-medication when everything else doesn't work. A doctor telling me to not self-medicate is a doctor telling me to suck it up and endure the pain. It is exhausting to never get any alternatives to these toxic elements. It is exhausting to always get the same advice about lifestyle changes, often ignoring that these changes might have already been tried out extensively. (This rant is not directed at you. I find your video very informative and helpful. My experience with doctors tells me that there is a significant lack of knowledge, compassion, and pragmatism in the medical field.)
Thank you. So many doctors don't take this condition seriously. I actually wish it was just a mental issue, then maybe there would be hope to get better. But I can literally feel my body broken and different functions in my body no longer working correctly. It's terrifying when it gets to be where I can literally feel like my body is dying. Whatever creates energy in the body, it's definitely not working right.
After a recent diagnosis of CFS, I am searching for a better understanding and your video did just that!! Many thanks. With brain fog, it gets overwhelming and hard to grasp., your presentation made it easier.
Thank you! Informational videos like this are absolutely essential for helping people with CFS and preventing stigma (especially stigma within the family). Often people around the individual with the condition will make harmful assumptions and judgements like "you're just being lazy", "you're just not trying hard enough or just need to exercise". Good information and expert explanations like this help to mitigate that by validating the experiences and reality of those living with the condition. I'm grateful to see that more physicians are choosing to try and understand rather than go down the road of medical gaslighting with this condition, hope this influences more physicians out there to help them get it. Also I was glad you highlighted the hyperarousal aspect of this and may look into trying Clonidine for sleep. Had never heard of that before. In my experience hyperarousal makes sense - survival fears are triggered when you experience such severe fatigue and can no longer function as you were previously. How are you supposed to pay the bills, go to work, take care of children, get anything done? And then others around you can't 'see' your challenges with fatigue so it is hard to understand, that only increases stress levels because of the invalidation.
Chemically-Induced Chronic Fatigue should be discussed. The more psychiatry and pharmacology gets involved, the sicker we get. Getting off is a separate hell.
Yes, I was prescribed Klink pin and Xanax for CFS 22 yrs. ago. My most recent doctor told me I had to come off due to the laws changing and tapered me too fast. That was 4.5 years ago and today I am 100% disabled due to coming off the vendors and 1 painpill. My sides never went up in 22 yrs. I could function every other day, now I can't. What the he'll are doctor doing???! They're making us sicker and more disabled.
Just hearing multi pronged approach makes me feel Overwhelmed and sicker. I have had CFS since I was 24 I got a viral infection and within one month I lost 20 lb and was what I thought dying. I have been living with this dreadful disgusting illness for 40 years. I'm 64 I've never been worse than I am now. I can barely function and I mean barely it's horrible. My complex care doctor doesn't even believe in CFS I've never had a doctor that really understands anything about it so I've just given up. I have tried so many different things to get my energy back to get the pain to go away every holistic natural thing you can think of and none of it has worked. I'm done I'm just fried cooked and over it. And at 64 I don't put much hope into doing a bunch of different things because I'm going to die soon enough. I cry all the time I have psychiatric problems I feel like I'm dead anyways but I'm not. Thank you doctor for making this video at least I know that one doctor knows about this dredded illness.
So sorry you haven't connectrd with anyone who understands! I'm also in my 60s and been ill since my early 20s. Western Medicine has been no help, but I e connected with some Eastern Medical professionals who understand the disorder and confirm my struggles. RUclips is definitely a blessing. Hugs to you!
I've had CFS for 20 years. I was extremely active. I ran marathons, and triathlons, snow skied, water skied, worked out in the gym 4-5 times a week, owned a company, and traveled the world. I came down with pneumonia, and since that time, I haven't been able to run a half mile. Bedridden for over two years - it took forever to get a diagnosis. It's been brutal. I'm always trying new things - I never give up on trying. I want my life back so badly! I'm currently doing a green juice fast - flooding my body with only plants. We'll see how that goes. I have a healthy diet in general, but I'm so determined to figure this out! I pray one day something kicks in and at least gives me a level of energy to be functional! I truly understand your story and wouldn't wish this on anyone. God Bless.
@@c-p1976 thank you for your reply. I completely get it. You had a former life where you were on the go doing things you loved active and boom you get an infection and now you're pretty much bedbound and in horrible pain I would assume just from being hit by a freight train. I think I can guarantee you there is one thing you have not tried because I just found out about it and I'm checking it out. I am not saying it is going to be for me but I have to tell you about it. There is a guy on RUclips the channel is called Pain Free You and they go off of a book called no more back pain by Dr Sarno's. And it's a whole field called TMS. And I'm going to do my best here to explain. The guy that has the channel on RUclips calls it PDP perceived danger pain. He puts out a video every single day there are many doctors that believe in this and they have interviews long interviews with people that have been completely cured simply by using the brain to change your perspective on what is actually going on. It's not positive affirmations but it is changing the way the pain is perceived and in the face of being dead in your bed like I am you face the pain in a completely different way. And when I say face the pain I also mean face the utter utter exhaustion. There are many many doctors now into this and I think it would be interesting if you just checked it out just to see what you think. that's what I'm doing right now cuz I've tried everything else. I've tried every kind of diet, this that you name it I did it nothing helped. I'm sure if you put what is TMS in RUclips search you would find what it's all about. Anyways thank you for reading this long reply I so hope you feel better because this is not fun. God bless you too and Happy Thanksgiving.
Sir, from the bottom of my heart, thank you for this video describing ME/CFS. I've listened to many hours of talks on this illness, and out of all of those, yours is one of my favorites. You are succinct and easy to follow and that is exactly what the patients suffering with this incredibly complex illness have been desperately needing. This is the perfect video for those affected to keep on hand for when (whether it be from family, a friend or a physician) they're met with that skeptical glare. What bothers me the most is how many patients are being labeled as having a purely psychosomatic disorder. The link below includes Cleveland Clinic's definition. An uninformed eye would read that and immediately draw the conclusion that ME has no physical cause. Meanwhile, there are stacks of evidence and data to prove the contrary. Notice how your explanation of ME almost perfectly parallels CC's definition of a psychosomatic disorder. The most striking snippet to me is that doctors will possibly order a couple test, but without findings, they'll often refrain from ordering any more testing. This sort of mindset is what causes so many genuinely sick people to get tossed into a black hole, never again to be taken seriously by any medical professional. While there may be contributing psychological factors (as you described so well) there are ultimately severe physical manifestations. And that's only one component amongst many others that are each physical in nature... When given inappropriately, the psychosomatic label results in poor care, refusal of important and necessary testing and probably most importantly, little to no appropriate treatment. ME can be completely debilitating, with many sufferers unable to even leave their home. Very few people are aware of this, even amongst practitioners, because these patients in society's eyes may as well not exist. It's awful. my.clevelandclinic.org/health/diseases/21521-psychosomatic-disorder I didn't intend to ramble, I just want to be encouraging and express my appreciation as a patient to those who are taking this illness seriously. I do have a couple of questions for you... 1.) On average, how long are your patients being admitted for? 2.) Are you familiar with two day exercise testing for ME/CFS? I imagine for inpatient treatment, this tool could be invaluable for you and your patients, especially when it comes to pacing via monitoring heart rate. If you're not familiar with this, I'll try to find the literature and will share the links with you. There's a doctor at Brigham and Women's who seems to be the pioneer in exercise testing for ME/CFS. 3.) Are admitted patients allowed a nutrition consult or trialed on any dietary changes? I know for many of us, food is daunting. We would love to change our eating habits but don't have the energy to navigate that process alone. If in the inpatient setting certain diet changes were implemented, patients could have the opportunity to experience any genuine improvement. With the knowledge of what works in hand, arrangements could be made post admission for how that patient will both obtain and prepair meals without exceeding their energy envelope. Again, thank you so so much for the video!
Thank you for your feedback. We really appreciate it. Your comments are very insightful. I agree with all you have stated. 1. The admission duration varies but in all cases > 4 weeks. 2. We involve a cardiologist, physician, gastroenterologist, dietician, neurologist, psychologist depending on primary symptoms. for example - cases present with predominant pain (pain specialist ) or migraine (neurologist), gut issues (gastro), dizziness (cardiologist). Exercise testing (CPET) can help diagnose the PEM and monitor improvement over time. As you are aware long covid patients have found to have microcapillary clots in the lungs that may impede gas exchange worsening fatigue. 3. Yes dietary aspects are taken into account. One thing that tends to be relatively common is the heightened sensitivity to a range of stimuli (food, noise, visual, touch(pain) taste); this part can be explained to some extent by the hyperarousal and worsened by fatigue. So when patients are treated adequately - reducing hyperarousal / improving fatigue / improving cognition many of these heightened sensitivity symptoms can reduce. The gut microbiome plays an important role in pathogenesis. However there is a range in how much individuals can then exert themselves - that becomes a trial and error - so it's sort of trying to come up with boundaries for a new normal. Also since many individuals with CFS can have perfectionistic traits; this psychological mindset shit becomes important. Included amongst this is moving from 'identity linked to CFS / and symptoms) to develop an independent identity as many individuals have experienced illness for many many years and time is needed for a 'new identity ' to develop. This phase varies between individuals. In relation to medical investigations - this should be taken seriously - as there are often a range of abnormalities that can be treated if identified - Vit deficiencies/iron def / Thyroid issues As always - The above is not advice but a general approach.
@@PsychiatrySimplified brilliant! Thank you for such a thorough reply. When I searched your name, it appears you are located in Australia? Have you been able to develop working relationships with like-minded practitioners using similar methodologies as yours in other parts of the world? The approach you're using has the potential to change patients' lives in such a profound way, but is unfortunately so under-utilized that I don't know of a single practitioner (I'm in the US) doing anything like this. Until the underpinnings of ME/CFS can be more fully identified and explored, I really see no greater potential for sustainable symptom and lifestyle improvement than what you have presented here. Bravo to you, sir!
@@MackLee23 sorry I somehow missed this comment. It’s difficult for me to comment on the approaches being used elsewhere but what we do know is that there is a paucity of a collaborative multidisciplinary approach to CFS which affects patients Negatively. Similar aspects apply to Australia. Mainly because specialties are fragmented which leads to fragmented care. William Osler said it best - “There are, in truth, no specialties in medicine, since to know fully many of the most important diseases a man must be familiar with their manifestations in many organs.” This quote applies to CFS/ ME a lot. Aiming to educate GPs through training programs. Appreciate your feedback.
I’m a nurse who self diagnosed CFS after having what I believe was Covid years ago. Wellbutrin helped tremendously for a year, then quit working. Desperate for another solution. It’s getting worse daily. Cymbalta is a no go r/t fatty liver. Tired of being seen as lazy and losing who I used to be. I even use my mom’s extra handicap sign in my car because just walking into a store has me exhausted and short of breath.
Usually one agent is unlikely to change things over long term. If wellbutrin had helped. - usually agents stop working because other aspects are unaddressed. E.g sleep, hypesrsousal. Addressing those allows the activating agent to work better. This is one example. Essentially it underscores a comprehensive targeted approach
I’m 20 days into taking Low Dose Naltrexone. After 19 months with ME/CFS I’m feeling the best I’ve felt since contracting CFS. Praying I’ll continue to improve over the next few months.
Thank you for a clear explanation of this horrific and debilitating condition. I was very pleased to hear you point out all the elements that can be at play in developing ME/CFS and the connection to Long Covid. Clearly you show this is not a psychiatric disorder, but psychiatry can be useful in the treatment presented here, as seen from a multi-disciplinary approach. Depending on the individual (not every patient will have adverse childhood experience, for example). However, what dissapointed me was your mentioning of CBT and GET without emphasizing the danger connected to those treatments. CBT as a therapy to accept the certain adaptations one should make in one's life can work very well. But CBT given from the standpoint patients are only ill because they have limiting beliefs is very damaging. And when you understand the mechanisms of exercise intolerance (which you apparantly do because you talked about it very well in the first part of the video), it's very strange you say GET is a treatment option. I know you meant "at some stage in recovery", but thats not clear. Also I think it should be stated very clearly exercise should be introduced very carefully ONLY when it's measured the exercise intolerance has diminished (I know you know this can be measured, judging from your other comments). And also has to be closely monitored. Especially when you take in account the personality traits you mentioned 😉 In most cases you dont need to stimulate ME/cfs patients but rather pump the breaks. The strange thing is you mention this earlier in the video but forget to repeat this or make the connection with this part, when you mention GET. A clear warning should be accompanying any reference to GET. It really can tip patient over the edge of the cliff resulting in such a huge severity if the illness they will not be able to recover. Other than that I am very grateful for this video which can help lots of patients worldwide to get their physicians, psychiatrist or therapist re-think their view on this illness. This is much needed.🙏🏼
Thank you for your detailed feedback. We did put a slide with the NICE guidance that talks about the GET being contraindicated or used only as part of a supervised regime. We will release an additional video soon where we will stress this point further. Thank you for raising this issue. Point taken and appreciated.
@@PsychiatrySimplified thank you for your quick response. I'm glad to learn you will pick up this issue more in detail later. And again: very happy to see this illness being adressed properly by the psychiatric profession.
Got to say, when I first got this infliction I thought I was on my own.... I'd never heard of M.E. and when I got diagnosed found a lot of help and support online..... unfortunately a lot of MHS professionals wouldn't even acknowledge it....got to say you're amazing.....hit the nail right on the head......showed me a lot even I didn't understand but what I'm going through...I noticed a definite coronation between M.E. and long COVID... Keep up the amazing work. hopefully we can find an end to it 👍
Thank you. I believe I have had this my entire life even though I am in my 60s. It has been something I couldn’t explain to anyone. I have a neighbor who just drops by. She doesn’t understand, as amazing as she is, that I am trying to manage something that is taking away the energy I need to just make it through the day. I have this video now to have an intelligent conversation with her
I so whish you were my doctor. I dont have any treatment at all. No understanding GP here in North Wales UK. Still pugging GET and CBT. Been there, done that, no improvement in 25 years. Your video is the best ive heard and you give me a glimmer of hope when I have given up, endure the day, walk dogs when I can, stay active but the latest flare is the worst ever. Now geting POTS and dangerous to drive needed for my part time work. 69 and waiting for an optout now as its so bad. I have no fight left to keep going. No I am not depressed! Im just worn down with no help with pain or the crazyness of symptoms in my body that my GP says they cant help with unless any one gets worse and then they will treat.
Oh thank you, thank you! I “stumbled” upon your channel and at first glance I noticed the psychiatry specialty. After watching you explain so well the diverse components of ME/CFS and treatments suggested, I have much admiration for you. You’re internal medicine knowledge paired with the psych specialty is so refreshing. I so want to get back to work and be well. Unfortunately I too feel as though I have been driving my own treatment. I have subscribed and again, thank you so very much. It is the hope that is reenergized in me after watching someone who “gets” it.
Thank you for your feedback. We have just published a practical diagnostic evaluation a few minutes ago. You may find that helpful as well. ruclips.net/video/kaTCExuc1Ps/видео.html
It's taken 10 years to diagnose. I finally found a doctor who was listening to me. He diagnosed me in the last year. Mine has been triggered by covid. It's gotten worse in the last 2 years. The fatigue and pain are horrible to live with. It's sad because you look fine but you are far from it.
One note to the supplements listed - you may want to also add calcium to the list. Low vitamin D also hinders calcium absorption so it's likely patients need calcium supplements as well. That was my personal experience - I had pretty bad chronic fatigue and confirmed with my doctor that my vitamin D levels were very low. My condition improved considerably with magnesium and vitamin D, but then improved a lot more in a short timespan when I also added 1000mg of calcium supplementation daily. As far as I am aware, calcium deficiency won't show in blood tests before it becomes life-threatening, so it may be a good idea to try a generally safe level of calcium supplementation for a week or two and see if the patient's condition improves.
Wow I have never heard this one thing about not being able to sleep even tho I cant even move in bed at night!!!! My mind never stops racing it's so hard to sleep when you are so exhausted in pain and racing thoughts... I did not know this was another symptom add another to the multiple symptoms.... this is overwhelming!! Always feeling fluish... foggy brained..Wow I am your poster child for this horrible horrible dieses...thank you I'm not crazy imso thankful I came across this its filled in a few symptoms I have that I never k ew was part of all the rest of them!!!
Hyperarousal , insomnia are core features of CFS / ME and long COVID because inflammation affects the amygdala and also reduces deep sleep affecting sleep artchitecture.
Clonidine never worked for me, but a similar drug, guanfacine made me feel almost normal. Caused somnolence, so be careful! But made me feel (almost) completely normal (nervous system-wise) for a short period of time. Unfortunately, I didn't continue it because it would only work for a short period of time and the rebound it caused going off it wasn't worth it. The plan was to alternate it with Clonidine, but Clonidine doesn't do anything for me. With proper guidance, I'd be willing to try it again.
@@kyleday7135 Thank you for your feedback. Guanfacine is 10 times more post-synaptic than clonidine at alpha 2 which means it works better for cognitive issues - but of course also has sedation like clonidine, especially if prescribed in the day. Generally, medications in CFS are about targeting symptoms. Guanfacine can target the milder end of cognitive Sx but cant address significant fatigue. Similarly - allodynia is not addressed by alpha2 and requires NA potentiation included. A single medication is usually unable to address all the domains of CFS.
@@PsychiatrySimplified Thank you. That makes a lot of sense. I am generally not comfortable taking new meds as in the past, psychiatrists (and other doctors) that don’t understand what ME/CFS and hyperadrenergic POTS is. So they have no clue how the drugs they prescribe are going to affect pathophysiology of the disease. The wrong meds can land us in the hospital and then before you know it, you are dependent on high doses of anti-anxiety medication because of the harm caused. I did some research on your explanation regarding Guanfacine, and what you said makes a lot of sense. I’ve enjoying reading about prefrontal cortex as well. It doesn’t seem mine is very performant as my executive function and frustration tolerance is just embarrassing. There’s a lot more research/information since I first tried guanfacine many years ago. I did have a good electrophysiologist/cardiologist near me, but it kinda bothered me how he understood POTS (he does research on it) but not the whole ME/CFS picture like you do. Is there any other particular drugs in psychiatry that you think can be very helpful for ME/CFS with hyperadrenergic POTS subtype? Any good ways to strengthen the prefrontal cortex? And if you happen to know any good psychiatrist in the Dallas area of Texas in the United States, please let me know. But I certainly don’t expect that there are any. Thanks again for your knowledge! We need more people like you in the world.
@@kyleday7135 I've covered management here - although it's Long Covid - big overlap so cover pots as well. I think it will answer a lot of questions and importantly evidence based psychscenehub.com/psychinsights/long-covid/
Coxsackie b4 hard backed virus off contaminated water was the day my entire life changed. Virus found be in brain cells then diagnosis of ME. I cannot say thank you enough Dr you are a breath of fresh air, a huge relief.
Interesting. I suspect I have ME, but my symptoms have always been dismissed as psychological. I've been depression free for many years now and my cptsd symptoms have also improved alot but my fatigue and pain has just gotten worse. Hard to believe that doctors and people in general actually think people want to miss out on so much of their life because they're lazy. Nice to see that you meet your patients with respect and an open mind. I would do anything for the ability to take a shower (or anything else) without being tired afterwards. Really hope I get to experience some advances in this field when it comes to diagnosing and effective treatments in my life time.
ur condition sounds exactly like mine. depression and cptsd improve but my body got more and more weak and tired, and gradually more symptoms like severe brainfog that feels like dementia
@@sekischro5093 sorry to hear . Have a read here more detailed - options for treatment - articles on CFS are also there psychscenehub.com/psychinsights/long-covid/
@sekischro5093 a more detailed video on the interplay between the brain , endothelium, ANS , MCA , and neurodivergence. ruclips.net/video/dIspvIMws2U/видео.html
Researchers are working on this from many angles (they just need more grant money) I have had moderate ME/CFS for 5 years. I have tried about 75 or so medicine and supplements. Still, the most effective for me is PACING. Meditation and mindfulness help me be in tune with my body to recognize when I need to rest. I have to lay down after shower too. Hang in there. You are not alone
I’m diabetic with fibromyalgia. After having 3 flavours of Covid over the last couple years I’ve never regained my energy. I describe it as an old iphone. You charge it to 100% make one call and it’s suddenly 20% it’s rough. I’ve been off work 5 weeks now because the body decided to freak out and explode into what looks like but isn’t chicken pox. Can’t walk 3 blocks without seeing stars and feeling like I’m going to pass out right now.
I'm currently awaiting for my appointment with my Rheumatologist after going so much bloodwork and even seeing a cardiologist. I've spoken to my orthopedic doctor, neurologist, psychiatrist, and pain clinic specialist. Each one was treating me for something different since I've been diagnosed with BPD, PTSD, anxiety, depression, buldge disc in neck and low back after being in multiple car accidents over the years. I pushed through all my injuries and worked in the health field for 20 years. I went from running, doing 5ks, working 50+ hours a week , swimming, traching, dancing, boxing, and international travel...to now barely getting through daily activities including cooking or doing the laundry. Driving, grocery shopping, and even doctors visits can drain me for the rest of the day. All these specialist brushed off Fibromyalgia and CFS for years. Now that I'm actually getting worse, I refuse to get any more medication or pain injections until I speak to the Rheumatologist next week. I'm on short term disability now, and putting my health first.
I have chronic fatigue syndrome it is a debilitating and life changing condition it takes all my energy to do basic housework and I "drag" myself through the day ... I have "brain fog" and it's hard to retain memory ... I was diagnosed in my 40's I am nearly 60 .. I still have the same level of lack of energy after nearly 20 years ... It is debilitating and disheartening because I was very active and in full time work before I was diagnosed with chronic fatigue syndrome
@@PsychiatrySimplified yes I am under treatment... I was diagnosed in my 40's and have been on a doctor's care plan for my illnesses since then ... I appreciated your lecture and your lecture has gave me extra information about chronic fatigue syndrome that I wasn't aware of ... Regarding the impact of the neurological aspects ... In that regard I can understand the anxiety and stress issues I suffer also the nervous system issues ... my overall illnesses and conditions and how chronic fatigue syndrome contributes to some of my medical issues thank you sincerely for your straight forward way of explaining chronic fatigue ... It has really helped me both understand this terrible condition but also understand the mental aspects I suffer .
It’s very difficult to get a Dr to diagnose CFS. They dismiss it. Tell you it’s all in your head. It’s very frustrating. I’m self diagnosed so there is no Dr to treat me/my symptoms. How would you suggest finding a Dr who is willing to take this on. Thank you for actually acknowledging CFS exists, and being willing to put info out there.
It's very difficult to answer this as the presentation is varied. Usually the general practitioner or family doctor is the main point of call who then coordinates care with other specialists depending on systems involved or symptoms identified. But ultimately also comes down to the health system structure. Wish you well.
I was diagnosed with fibromyalgia many years ago. In 2016 I was diagnosed with Polyarteritis Nodosa. Now, I am thinking about CFS. I’m exhausted all the time +++
great presentation I have been suffering w mystery symptoms ever since i had elevated EPBarr markers approximately 5 years ago. I try to tell physicians symptoms which are crazy indeed which include brain fog, joint pain, tingling in the arms n legs, and a few others. many days I feel like ive been in a 6 hour boxing match . this presentation is great for patients and physicians. I just hope I can find a doctor like this stateside
I was initially thinking, as per some other comments, how well you were explaining Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) (ME/CFS) and found it very informative and interesting until I came to the treatment protocol. What is Graded Exposure Therapy? Do you mean Graded Exercise Therapy (GET)? I see you have used a snippet of the latest NICE guide lines but have missed out the relevant text. "Graded exercise therapy is a term used in varying ways by different services supporting people with ME/CFS. In this guideline, graded exercise therapy is defined as first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active. This definition of graded exercise therapy reflects the descriptions given in the evidence that was reviewed, and it is this approach that the guideline says should not be undertaken. An individualised approach that should be taken for people with ME/CFS who choose to undertake a physical activity or exercise programme is described in recommendations 1.11.10 to 1.11.13." This clearly states that GET should not be undertaken and an individualised approach is required, see below link. There is also no mention of a Post Exertional Malaise (PEM) assessment (not sure if assessment is the correct word though I am sure it starts with an 'a' but I know it is a questionnaire) which is used to inform if any exercise should be advised or if pacing would be more beneficial. Pacing is something you talked about earlier in your video together with not overdoing it, so I don't get why you have then go on to suggest GET as a treatment. www.nice.org.uk/guidance/ng206/chapter/Recommendations#managing-mecfs Full recommendations: www.nice.org.uk/guidance/ng206/chapter/Recommendations I wasn't diagnosed until a few years in to the disease, during this time I pushed through the fatigue and the disease has slowly gotten worse, to the point I constantly have Post Exertional Malaise and associated symptoms. I truly believe that had the disease been diagnosed earlier and I had been instructed to listen to my body and to pace myself and not push through the fatigue to increase my physical fitness as GET advocates, that I would still be able to function today rather than spending most of my day in bed unable to walk more than a few steps. Adding a diagnosis of Fibromyalgia (FM) also confused the issue where exercise is more likely to help some sufferers, but as I score highly on the PEM scale I won't be doing any thing other than pace myself for the foreseeable future despite what any of the specialist team decide. Recommending GET, given the latest evidence and guidelines, is surely leaving oneself open to litigation should a patients symptoms become worse or have I got it totally wrong? When you use Cognitive Behavioural Therapy (CBT) is it the type that teaches a patient how to cope with their symptoms or the type that tries to cure them of the disease that is in their heads? I am guessing the former but it still surprises me how many clinicians still believe it is a psychosomatic disorder? I am very interested in the part about diet and nutritional supplements and your thoughts on whether a clean diet, free from inflammatory foods such as processed foods, sugars and ??? grains (brain fog kicked in, what is the word, highly refined?) has the same effect as the supplements, as long as no deficiencies are detected, as this will promote a healthy gut, see joinzoe.com/about-zoe This ties in nicely with my next point I am also very interested, in fact fascinated, in Faecal Microbiota Transplants / poo transplants (I am going to check if you have done a video on this) as I believe the gut microbiome is an important aspect of the disease especially in people like me with a comorbidity of an autoimmune disease. I think that when this treatment is routinely used, it will benefit a number of diseases. The microbes in the gut have more influence on our bodily functions than we are currently aware of and have an important part to play in our wellbeing. I don't usually comment although I do like to rant in person, as the typed word can often be taken out of context but in this case thought that pointing this out could benefit someone in the future. You are welcome for the many spoons this comment has used up, thanks for believing this condition is real, all the best.
Thanks for a detailed comment. Graded exercise therapy is the term - it was something that I didn’t pick up on until after video was uploaded so corrected it only in subtitles. We added the slide to provide some contract. NICE has as you have outlined changes it’s stance on GET. There are assessments for PEM as well. This video ofcourse is very basic and for general education only. So the details of research and controversy around GET is something we avoided. Ultimately it is individualised to the patient. We will be doing a video on gut brain axis and microbiome soon. Thanks again for your detailed comment.
I’ve written a few articles on the Gut brain axis and inflammation in depression as well. psychscenehub.com/psychinsights/the-simplified-guide-to-the-gut-brain-axis/
GET and CBT are not effective treatments for ME/CFS and have been abandoned by UK's NICE and in every developed country. UK was the last hold out due to politics and one man's ego.
In my area most physicians won't even address my cfs. I am glad I am a self read nurse practitioner. I have had to ask my physicians for treatment of each individual symptom without naming the disorder. If I bring up the fact that I was in bed for 3 years due to cfs both my doctors blew me off. There are no cfs specialists in Missouri. But I found that NADH and magnesium plus vitamin d really helped my symptoms alot. Thanks so much for not ignoring this debilitating illness
I would love more information for someone like myself who had been diagnosed with CFS/ME, Fibromyalgia but also has Bi polar disorder type 2, PTSD and serve anxiety. Medication such an Cymbalta has not worked for me on neither a psychological or pain level. In fact the symptoms I got from the medication just made me feel worse. I have tried this 3 times now and everytime is the same result. Excess sweating which is hard when I struggle to control my own body temperature and heat is my worse enemy. Life is an absolute nightmare and getting the actual correct care and treamemt in your own area would be amazing. Thank you for your videos. I am finding them very insightful .
There is an overlap between CFS & the conditions you mentioned because the circuits involved are the same and there are common pathophysiologies. This video may clarify this - ruclips.net/video/dIspvIMws2U/видео.htmlsi=B-epwW40_fUcuINs
Thank you! For 9 years I've been going to one doctor to another, hopelessly explaining them my issue, but nobody would understand me((((( Everybody would prescribe something, but nothing helped. At last, one brilliant gastroenterologist to my surprise told me I had to take antidepressants! I didn't believe at first, but anyway I found a psychiatrist for the first time in my life. She prescribed me Lamotrigin and it worked almost immediately! Afterwards we added Zoloft, Stresam, and this formula steadily works for me.
After 2 pregnancies,then getting the Epstein-barr virus I have had CFS for the past 32 yrs. .My life has literally been stolen,have been on this journey alone as my family does not understand,care and refuse to believe ..irrelevant of seeing with their own eyes.I pray for dead each night.
I am so very sorry to hear that. CFS is very real but you need support from family and friends. Research as many videos as you can. Nutrition and rest and being in nature on the earth is so good for you. No easy cure or fix. It’s heartbreaking to hear that those close to you don’t believe you. It sounds like a living hell for you. 😢😢
My daughter is currently going through this. She also had the Epstein Barr virus. She is only 24 and I pray she can recover quickly. I believe it is possible.
Totally get that. No support. No one here with me. My sister and daughter keep making plans for me. They dont get it House is falling apart around me. It goes on.
So happy to hear your video. Finally someone who acknowledges CF. I have suffered from this for so long, I wish physicians would recognize this. I felt like you were talking about me.Thank you very much. Just subscribed and liked
I'm currently experiencing a severe relapse of CFS post-covid, so now going to look for the video on that. It's scary and sad because I did manage to achieve a measure of recovery for a few years (maybe 80%), and I had returned to work. But now facing the difficult reality that I may not be able to do either of them, I get up take a shower, make breakfast and am already at exhaustion point. This is heartbreaking and terrifying...
Exactly my position, was managing M.E well with pacing and resting. Post Covid, my symptoms have got significantly worse, I'm off sick and unsure I can return.
The scariest part of this illness is how much time it takes to get some progress and better tolerate exertiom vs. how small of an occurrence it takes to undo all the progress and put you right back into hell. And now especially when covid is around.
Thank you for bringing this topic into the light. I’ve had chronic fatigue syndrome or fibromyalgia maybe, I honestly don’t know which, and the problem I generally face is NOT that I am entirely dismissed, but I haven’t found a doctor that is willing to diagnose me, because they say it’s too hard to diagnose and they want some other doctor to diagnose me 🤷🏻♀️. Sometimes my doctor will treat certain symptoms related to this condition but I’ve never been diagnosed with a condition I’ve had for about 25 years. It’s really frustrating. I had already retreated from society due to general exhaustion when COVID came around, so self isolation was no big deal for me. I also live in an isolated are where there are very few people so I was able to avoid COVID.
Thank you for your answer and attention. It is so hard to get doctors to properly diagnose me, I have described my symptoms and they ask me about fibromyalgia but won’t diagnose me. It’s really hard to be sick with something that is not diagnosed, because as long as it is not diagnosed, I can’t explain to anyone why I am sick all the time. I can’t tell people I have fibromyalgia because maybe it’s something else and similar and I feel I would just be lying or sounding crazy. Even though you are just here on RUclips, it feels good that you responded to me, because it makes me at least feel understood. Thank you so very much. 🙏
I think it's important to note that while the medications you suggest may be evidence-based for treating specific symptoms in the general public, there have been no double blind clinical trials conducted on people with ME/cfs. The evidence for their efficacy in ME/cfs is anecdotal, based on clinical experience.
It is extremely difficult to conduct RCTs in CFS/ME for many reasons 1. The condition is heterogeneous. The permutations and combinations of patients is huge 2. There are varied criteria for CFS /ME 3. If a single medication is considered in RCT with CFS - evidence of it working or not working is very difficult to generalise or extrapolate to other patients. It is all based on clinical experience extrapolating from psychopharmacology, clinical experience and evidence from other disorders. e.g. We know the effects of clonidine - we can apply those to hyperarousal in any condition. We know how stimulants work - we can extrapolate that to other conditions. e.g stimulants used in fatigue in cancer or other inflammatory conditions.
@@spense5905 they can make a difference when hard appropriately: as they say Evidence medicine can lead to the ecological fallacy - group statistics don't always apply to the individual. Pattern recognition and clinical expertise can
@@PsychiatrySimplified I respect what your saying but the problem is I suspect the condition is a systemic organic disease & not primary a psychiatric condition. There are several cases like Sophia Mirza who died from CFS & was treated purely as psychological patient to the point they broke down her door & sectioned her!! During autopsy she was found to be suffering from a chronic active inflammatory disease/infection like herpes zoster. (Horror stroy) Professor Simon Wessely has characterised the condition as psychiatric when in fact evidence is pointing to an organic cause. Dr Charles Shepherd caught Chickenpox & then suffered CFS. He openly admits that his thinking previously was it was some sort mental illness & now advocates for patients. Biological organic aspects to the condition need to seriously looked into.
@@spense5905 completely understand and agree with your point of view. Both saying the same thing. This is a biological systemic condition that affects the brain ( that's where psychiatry comes in - different from psychological approach). I agree that patients have been labelled as ‘psycholgically unwell’ without looking at the biological aspects which is very unfortunate.
I have found that infrared sauna can help the wired fatigue. I bought a used sauna and use it every other day. Also, I'm on a stimulant and low naltrexone which helps a lot. The overall fatigue is still present so pacing is very very important.
Thank you so much for sharing your personal experience. There is evidence for infra red sauna ( small studies) but personal experience is valuable. Also stimulant and naltrexone is an evidence based combination. Wish you well. Thanks again. 🙏🏼
After all these years of suffering from chronic fatigue, I realized it was heart damage from prescription medication as a teenager. I’m 49 and finally treating myself naturally and eating healthy and I feel better than I’ve ever felt. Not 100% yet but I’ll get there. I pray for everyone who suffers from any ailments because doctors will only make us worse.
How did you realize it was specifically derived from heart damage from medication in your teens? Have you had confirmation of this from a professional?
Yeah doctors have only made me worse and gaslight. And caused greater damage and symptoms then thrown away and charged thousands. Yet everyone else i know say doctors heal and to go to them
I have 0 pain No Pots No triggers I had my uterus removed due to extreme endometriosis Symptoms Adrenal fatigue Hyper sensitive lymphatics Wired tiredness Occasional migraines I am taking Vit D I was at an 18 on scale of 30-100 I am taking supplements to boost adrenals, and detox my liver... I just started Vital Adapt by Natura and 2nd nature liver support and detox with NAC and milk thistle... I finally have a little energy....
Long covid here. Chronic Fatigue Syndrome started during it. I don't fall in the conventional diagnosis. I sleep a lot. Just sleep. No problems sleeping. No energy and very easily winded. Somehow I know that physical therapy is NOT a solution. If I end up felling a little better and overdo it... I end up putting myself back by days. The recovery rate is extremely slow. The AMA backed, traditional, route is not the snswer. They are part of a business model that I'm not in.
This is a very typical presentation. Have a listen to the two additional videos we did on CFS and Long COVID . Sleep disorders / significant day time fatigue even to the extent of day time excessive sleepiness can occur due to the effect of inflammation on PFC and striatal areas significantly affecting Dopamine. But also that the sleep even though the person sleeps is not necessarily restful I.e REM hyperarousal is often present with decreased NREM deep sleep . Some individuals even get a diagnosis of type 2 narcolepsy. It is treatable - ADHD phenotype ( a vulnerability) can present like this .
Diagnosed recently, at 63, with ADHD. Had a different therapist say I was definitely on the autism scale. These diagnosis explain a lot for me. I had a thymoma removed in June of this past year. I had COVID in late February, 2023 which lead straight into long COVID. I was so sick that I was sent to ER with instructions for many tests. That's how they found the thymoma. CT Scan. Anyway, thanks for the advice and amazing call on the ADHD diagnosis. Dopamine. Check!
Oh, and one more thing I forgot to mention, I've been diagnosed with M G, the autoimmune hick up. I present no outward symptoms, thankfully, but it may have something to do with the inflammation issues.
Im so damaged and broken from this condition. Its totally broken me. And now im mentally broken i get support and care Had it rapid onset 1997 . i was pregnant so my white blood count was raised for months so i got the EBV diagnosis I now have a lot more conditions and im not sure if thats a blessing or a cure Us long haulers have been through absolute hell . Mine was a hospital admission in 2016 and at the same time a cleaner stole things from me and some of it treasured Im keeping an open mind Just to say as well that a lot of us cannot afford vitamins due to the cost of living crises I eat well. I dont eat processed food I drink lots of milk and eat dairy products Im watching this bit by bit and like i said i will keep an open mind
Thank you for posting this information. I could relate to everything, from the childhood trauma, to the HPA axis dysregulation, to the thyroid problems. I think I’ve actually had mild CFS symptoms for my whole life, but was high functioning until my mid-thirties. It took 15 years to get my Hashimoto’s diagnosed. Five years ago I had my thyroid removed due to thyroid cancer, and the CFS kicked in full force. I have no life. I possibly have one or two good days a month and then I overdo it. My exercise intolerance is horrible. And I get nervous and jittery and exhausted after exertion. I’m trying to slowly build up my exercise tolerance. I’m walking 5 whole minutes a day. I’m tired and frustrated. At least there are doctors in the world like you. But they don’t exist here in the U.S. I had hyperparathyroidism that developed a few years before my thyroid cancer was found. It caused a lot of body pain. It’s existence was quite evident in by blood and urine tests. Yet they just kept saying I had fibromyalgia. I give up! How blessed your patients are to have you!
Thyroid dysfunction can be associate with fatigue and many individuals with CFS have sick euthyroid syndrome - which does not get Rx if only blood tests are looked at. Glad to know you were able to overcome this. Thanks for sharing.
I have a novel idea...from a 35 yr long sufferer of yuppy flu in the 70s ,to ME in the present day. SIR...you need to speak to ALL of your colleagues ....tell THEM to listen to their patients...,take their patients seriously. I've had a 35 yr.lesson in frustration to the point of not going to another Dr. Ever in my life again!!! I just watched a nurse on RUclips blow the whistle on drs. In Florida and how all people were wrongly treated for covid19....all in the name of PROFIT. ....and you want me to trust drs.!!!! Sorry....you may be one of the very few drs. That are sincerely trying to help people. I was left in such pain I didn't want to live any further. THIS IS INHUMANE..to leave people suffer for decades, all the while I was told I had a mood disorder.....who wouldn't be moody after being dismissed for decades... DONE MY RANT!!!
I hear you..has been almost 30 years for me, to weak scared and broke by the many treatments, absolutely horrific...def have had enuf!!! Care and blessings🙏🌸
Western Medicine is not aligned with healing, contrary to general belief. The AMA has strict rules for those who choose to be members. Alternative methods are not allowed to be practiced, and a syndrome not officially "recognized" essentially can't be treated. Docgors like the creator of this video are a blessing because they put human well being above their careers
thankyou so much for this, i have had ME/CFS for 20 years this year, i was 38 and acquired some major infections, i had a cold that burst my eardrum to let the gunge out then i got a strep throat which was so bad i was spitting in a cup and the worst the doc had ever seen. I have always had issues with hayfever as a child always in bed with extreme hayfever ear problems and shingles so i was inevitable i suppose but after these last infections i watched my father die and i know that was the trigger as i felt all my neurons firing in my brain that night. I have super wired nights awake till 4am sleep till midday, pain, fatigue, pem, etc etc. You have nailed it with sensitivities to chemicals and environment. I have recently been given steroids which have mad a huge difference but i am sill very unwell. I have lost my carer and social life but i wondered what is the Staphylococcal toxoid vaccine?? i wonder as Strep throat was the last big infection i had and i just know its my immune system and if this injection would do something. The strange thing is when i get head colds i feel that my ME/CFS has gone?? ( this happened twice) do you think my rheumatologist would give it to me??
This is a medical decision that your doctor will make. It would be helpful to discuss all the treatment options with your doctor. You are also reporting symptoms of being wired, sleep issues etc. It's important to ensure that any neuropsychiatric symptoms are also addressed appropriately. Wish you well
I got ME/CFS at 37yo, I'm 51 now and slowly improved from bedbound to housebound to moderate now. The mRNA covid vaccines and booster helped both objectively and subjectively after 4-6months after the jab. Looking forwards to my 4th Jab next month. Colds, flu, flu shots never affected my CFS negatively.
@@larryc1616 thanks for sharing your experience. Interestingly there have been similar anecdotes of long Covid improving after vaccination in some individuals.
Hey man you're videos have been extremely informative and you seem like you are way more understanding and knowledgable then the majority of psychiatrists and doctors I've been to over the years. I live in Australia and have been struggling with chronic fatigue and adhd symptoms for many years now. Was finally put on vyvanse after trialing many different antidepressants and obscure medications such as memantine, valproate, modafinil/armodafinil among others. Vyvanse at 30mg has been the only medication that has helped with my brain fog/concentration and fatigue issues. Recently my doctor added clonidine to take at night as I was still struggling with sleep issues and so far it has really helped with falling and staying asleep, only on 0.075mg so half a tablet. You mentioned this combo in your video, so in your experience does it take time for the clonidine to work for ADHD and anxiety symptoms as so far it has helped with sleep but I'm feeling a bit more groggy then usual upon waking which is a problem as this is one of my most prominent symptoms. Is this a common side effect and does it pass with time and/or a dosage increase?
Thank you for your feedback. Clonidine has a dose range. It is effective for range of symptoms including circadian rhythm dysfunction, anxiety etc. In general the dose of stimulant e.g vyvase vs clondine is balanced to provide an optimal balance of combating fatigue vs Rx sleep.. Vyvase doses are at Maximum of 70 mg. It is difficult to answer individually but here is a video on clonidine Clinical Application of Prazosin & Clonidine - Role of Alpha (α) Adrenergic Receptors (α1 and α2) ruclips.net/video/TioM9NymZXc/видео.html. Also we have done a video on stimulants. Wish you well.
Pretty sure I was in the hospital for over a week after having my kid. I don't think this is a rule in America, probably just crap insurance or lack of garbage.
Thank you so much for this video. I was diagnosed 5 years ago after a few blood tests by my GP. I have been pushing to see a specialist ever since. The best I have got is a referral to fatigue services in Bath, which I am still waiting for. When I was diagnosed I was given amitriptyline and sent to a psychiatrist who told me to pace. I have never felt so unsupported and alone in my life. So I took to Facebook to join groups and get help from other sufferers. I tried many approaches. Now I use LDN. This is the only thing that has improved drastically most of my symptoms. The only symptom it has not touched is the debilitated body when I first wake up. Until I start moving it's awful. Is there any meds I can take for this? I've noticed I will sleep for just 10 minutes and have a lot of dreams in that short time. Has there been any sleep studies done to understand if sleep quality or type of sleep is causing some of these problems?
While we can’t give advice - the following are the evidence based treatments. Clonidine is useful for nightmares and poor sleep. Guanfacine can do the same and can also help with day time brain fog and fatigue. If fatigue is severe dopaminergic agents are needed . See details here - while this is on LC - same principles apply psychscenehub.com/psychinsights/long-covid/
Have you also checked out the book by Dr Sarah Myhill she's a UK GP who was so in demand she wrote a book (several now) to help reach more people in need.
i was a landscape gardener, single parent with ptsd and a body builder, house keeper etc, now bed bound because of this and more, was so active but no more 😢
Thank you for your videos. You are the best. I am an Italian patient and I have always thought that my symptoms (depression, CFS, fibromyalgia) are related with inflammation and immunity system. I live in Rome but in Italy it's difficult to know this from doctors. Do you know some specialist in Italy that can help me? Thanks 🙏.
Thank you for your feedback. I’m sorry I don’t know if any doctors in Italy. Hoping you can discuss the condition with your doctor/s to implement treatment.
OMG, I’m not alone and I’m not going mad. I certainly want off this bus though, not enjoying the ride. I’m 55yrs old, physically fit pre Covid. 4years on and feel like 99yrs and unable to achieve a fraction of what I used to do.
I have found low-dose naltrexone quite effective, I assume because of the anti-inflammatory effect. Unfortunately I am still pretty impaired before noon, but that’s so much better than being impaired all the time. Downside: will keep u from getting long-term care insurance
Yes low, a low dose of naltrexone can help. Usually, because it is multi-systemic and multiple areas of the brain are involved - augmentation strategies are needed.
Hi. I am also finding LDN helpful. And like you - before noon, after waking I am still debilitated. But during the day I am doing a lot better. Just wish I could understand what happens in the night to make the mornings this bad.
Where have you been all my life! I wish that you can make this video mandatory training to every Primary Care Physician and specialist who deals with these multi symptoms. Part of the problem with our healthcare is our healthcare is piecemealed out to a variety of specialty providers and none of them talk to one another. They expect someone who is sleep deprived and in a brain fog coma to adequately relay years/decades of their past with all their symptoms. It's ridiculous!
I have ME/CFS and it's impossible how this is treated in my country (Germany). I live alone and I don't get any help. It's extremely difficult to get help or just the diagnosis. No doctor I met has any idea about it...
Thank you for this information. I’ve tried everything you’ve covered here, over time, and nothing has had a lasting effect. I always check in now and then to see if there is anything new to try but so far, nothing. 20 yrs and mostly bedridden now.
Sorry to hear. In combination or individually? With CFS it's not one or two things that make a difference especially in severe cases - often combinations are needed. In the comments section and in the other video there is extensive discussion on strategies.
Very comprehensive video. Thanks for your helpful information. My daughter (age 47) is nearly bedridden with POTS, dysautonomia, CFS, Ehlers Danlos hEDS. She's been declining over several years. When Covid first began in the US she had an illness that presented like original Covid. This was before it was named. She declined very quickly and has never recovered to prior level of activity, etc. We did not test for covid until after 11mos and it was not found. She has had Ketamine infusions which were very helpful but don't last very long, less than 2 weeks. We are not wealthy people so cannot continue this treatment. Do you have any input regarding Ketamine and Spravado? What is the mechanism by which Ketamine could be helping her?
Sorry to hear. Ketamine and esketamine ( spravato) are NMDA antagonists. Excessive glutamate is one mechanism in inflammation that can result in excitotoxicity and can also worsen pain.They have antidepressant , anti pain properties. However as with CFS , a multi pronged approach is needed. There is extensive discussion on the comments and also in the other video we did on CFS. That could provide some ideas on treatment to discuss with the doctors. Wish you and your family well. Here is a bit more detail on esketamine psychscenehub.com/psychinsights/esketamine-psychopharmacology-efficacy/
Thank you so much for this video I’m sure it will help so many people to understand this debilitating illness. I started suffering with it after I had the flu shot in 2012 when I went to work in a care facility. I had absolutely no problems with my energy level before that. I had been having problems with undiagnosed fibromyalgia for a long time but that was it. I was in and out of my drs office for years with no help at all. I was told to get more exercise and it should get better. I was doing housekeeping cleaning 40 rooms plus extras how much more exercise did I need. Well I crashed and that was it. I’ve been off work now for 6 years. I am in BC and I found out about the studies that were going on in the BC Womens hospital for this and asked my dr to put in a referral. It is a 2 year waiting period but I had already been suffering for years with it. She then proceeded to tell me we have a dr here that took some training there and would I like to go. WHAT THE HECK!!! Why didn’t she suggest this sooner. About three years ago is when I got to go in for the first time to see this doctor and I ended up with a definite diagnosis with CFS/ME/fibromyalgia. She started working with me with certain medication‘s which I reacted to because I have massive chemical sensitivity And then we gradually worked up to where I am at now. Through it all I have found some slight relief with occasional crashes but we have been managing. In August I got Covid and then all hell broke loose. I have been suffering with the worst fatigue since then. I called my specialists office to try and make an appointment to get in to see her just to be told that she has decided she is not going to work with this type of thing anymore. I couldn’t believe it I thought how can you just stop treating your patients without contacting them first for one final appointment. Since then I’ve been living in hell. I contacted my regular doctor and told her I can’t do this anymore I just want to give up. Now we will talk about some of the treatment that I have been on. I have been on a low-dose naltrexone which has helped with the pain somewhat and have been on Modafinil. The modafinil itself I think was keeping the beast at bay but not completely. Once I had this massive crash the modafinil did nothing so this is when I contacted my regular doctor and I told her that my specialist is not doing this anymore and I didn’t know what to do. I had been taking 200 mg of modafinil and it was not doing anything at all to help at this time. She told me to take 400 mg and this became a nightmare. Because of my chemical sensitivity I ended up having massive side effects from it which I did not realize at the time that’s what was going on until I decided to read up on it. Today I decided I’m only going to take 200 mg and see what happens. I have got continual brain fog now since I have been taking the high dosages and I am very weak and can hardly function. I think if I had just taken the time and allowed my body to go through the crash I may have been able to get through this and not be where I’m at now. I don’t know what to do or where I’m going to go from here. I’m 61 and I just don’t want to do this anymore. I’m hoping that my body will stabilize after it adjusts from the trauma of the sudden increase of the modafinil. I feel betrayed where my specialist is concerned and I’m sure there are a few here that feel the same way. That was so unprofessional of her just to suddenly decide she’s not going to be treating us anymore. Anyway sorry for the long rant but I’m sure everyone on here can understand what I’m going through. Maybe I will talk to my doctor about doing what I wanted done years ago and go to the BC women’s and see if there’s anything that can be done. All I can say right now is that this is the worst possible time for this to happen. I need all the energy I can get and I can’t for see it happening anytime soon😢😢😢
Sounds like a bad med for you, making you weaker etc. I too have med issues causing same like slow death... Ill be ditching all poison / meds soon..back to trying self care . Best to you 💙🙏✨
Sorry to hear. In this article, I've covered specific aspects of treatment. often the hyperarousal / agitation / sleep disturbances also need to be addressed - There are some specific aspects discussed Ps not medical advice psychscenehub.com/psychinsights/long-covid/
So sorry to hear how hard it all has been. Regarding Modafinil, here's an important point: some people do better on a much smaller dose. I get optimal effects at 50 mg. while I know others who do well on only 25 mg. - much better energy and ability to think clearly than with higher doses. I guess it's similar to the Low-dose Naltrexone (LDN) concept. Worth a try. I hope that you get relief, and soon. I can sympathize a lot...I'm 68, have had a recent worsening of my many symptoms, and feel quite abandoned by the medical profession. God help us!
Thank you so much sir for this wonderful lecture ❤️ Your lectures are amazing and always helpful for a greater understanding. Please sir also make lectures on Forensic psychiatry, will be very helpful for us in understanding this difficult part.
Thank you for your feedback. We will definitely keep this in mind. Thanks for the suggestion. Do you have any specific topics in mind- we could focus on them. We have a series of videos by Prof Mullen that you might find useful in the mean time. Forensic Psychiatry ruclips.net/p/PLV0KZkVDyoOF4yduzi7RrGJCZnjnerh13
@@PsychiatrySimplified Thank you for your reply sir. I would suggest a brief overview on important topics of Forensic psychiatry included in mrcpsych paper b by sir Dr. Sanil Rege. Thank you
COVID-19 Moderna Vaccine allergic reaction triggered the return of CFS at a debilitating level. Continues to keep me home bound over 2 years, to date. Desperate for it to resolve.
Thank you so much for this video. Best I've seen addressing CFS/ME. I had it years ago after EBV. Have had Hashimotos for 30yrs as well. After my 1st Covid vax 4 weeks ago on the second day I went down with CFS/ME again. Am mainly bedridden a.t.m.
@@janbishop9726 I would be very interested to hear about any test results from this relapse period! I've had "This Damn Disease" since at least my late teens. I've been given diagnoses of (in chronological order): Chronic EBV (1987) Fibromyalgia (1994) Probable MS (2004) MS diagnosis (2020) I have refused to get the vaccines because I have had severe reactions to vaccines at least 3 times. In fact, I think that vaccines in childhood may have played one of many important roles in either setting me up for, or causing, my illness. And a booster of the Tetanus vaccine in 1983, caused a dramatic severe reaction, resulting in weeks of illness, and a worsening of the illness in general long term. Please share as much as you feel comfortable about your experiences, both in general, and re: the COVID jab!
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![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](/img/1.gif)
Has anyone noticed that your more awake towards the evening and nighttime hours?
Yes!!!!!
Yes always from birth before me yes are you hypermobile to do with cortisol
Yes, for the last eleven months since the flare up after catching a virus. My brain would feel like it was exploding between 3-5am every night. Wake up feeling severe fatigue. Always feel more normal at night as if my days and nights got reversed.
@@kathygreen6043 yes are you hypermobile I've found a link with all this with hypomobility Asperger's ADHD I was born like that though before CFS or fybromyalgia
Yes. Definitely
Chronic fatigue syndrome is terrible. You try to stay awake but once the fatigue hits you, you just cannot. Even when you sleep and rest your still exhausted. It's not funny and it's horrible. We're not lazy at all like a lot of people think. Our bodies just don't go like everyone else. Once we use our energy for the day we don't have any energy left.
Proverbs 23: 23 KJV
What I find really fun is when the fatigue is too much to move, but you still can’t fall asleep. Then your body starts to hurt because/while you’re not moving. Ahh, good times. 🙃
@@gypsypath1 I'm in excruciating pain everyday and every night. I have rheumatoid arthritis, osteoarthritis, scoliosis, chronic fatigue syndrome and that's not counting all my other diagnostics, medical conditions, disabilities and limitations. I do the best I can even though I'm in excruciating pain all the time. I've had 49 falls already and I'm slowly loosing my ability to walk completely. Believe I don't wish this on anyone. I have never been lazy my whole entire life. Chronic fatigue syndrome is horrible and not fun at all.
@@kimberlydavis5034 Exactly. My motto has kind of become “laugh or cry.” I have to try to force myself to find humor every day so that the hopelessness is not the only thing I see.
@@gypsypath1 Oh believe me I completely understand. I try using humor as well to brighten up the darkness of my medical conditions, disabilities and limitations.
Firstly thank you for addressing this so well, it’s rare having a doctor who doesn’t dismiss m.e. but also, things such as GET and CBT are NOT treatment options, GET has been proven to be dangerous to M.E patients even if you’re “mild” and are able to do GET at the start it can end up permanently damaging your body and CBT is not a treatment it should only be suggested as a way of coping with symptoms better not curing symptoms, this is clearly stated in the new NICE guidelines. :)
I was completely healthy until the age of 6years old when I became ill after a bout of shingles, I was admitted to hospital with an ataxic walk and mild but constant fatigue, I was there for 6 weeks, 6 weeks of hell, I was told I had munchausens syndrome and functional neurological disorder and I was forced to do intense physio 7am till 7pm, in this time I was called lazy, attention seeking and stupid and told its all in my head my parents also got told I’d start wetting the bed within a few weeks for more attention and to leave me alone till I stop faking… I left hospital, severely underweight unable to hold my head up, unable to swallow unable to walk unable to sit up in constant pain with severe fatigue, my parents then straight away admitted me to a new hospital of which i instantly got a ng tube and iv fitted the treatment was better but not great as we still had to fight for my health but I was diagnosed with cfs and the few nice drs reassured my parents it was not In my head, but they still didn’t understand the severity and just assumed it was just fatigue I was there for 6months then on and off for a couple years after.
I’m now 14, 15 in December and still have the ng tube and need a wheelchair to get around they permanently damaged my body because they blatantly and ignorantly blamed my physical illnesses on mental health disorders. something I have learnt and try to educate is that chronic fatigue syndrome is the wrong name and addresses the illness wrongly (and also has a lot of stigma attached) I call it Myalgic encephalomyelitis because chronic fatigue is ONE SYMPTOM not the illness, the fatigue can be so severe that you feel as though you have to try put all your effort into keeping your heart beating, but that’s a symptom, not the illness it’s self. I now have been diagnosed with M.E, POTS, EDS and MCAS and even though I’m only 14, I’m just surviving I do not have a life. Having m.e is like living in a body that is already dead and you’re just dragging it around, The average person with ME scores as more disabled with a lower quality of life on ‘quality of life surveys’ than those with multiple sclerosis, stroke, diabetes, lung disease, organ failure, and cancer. I don’t feel like I have anything to live for because I am so ill and I’m so much pain all the time and there is absolutely 0 true medical support. I’ve now developed depression due to being so isolated and stuck in bed all the time but I can’t admit that to medical professionals because I can’t have mental health on my record or it’ll be much harder to get support for my physical illnesses when I need it.
having ME is horrendous and I appreciate this video because it is the first video I have seen of a medical professional being so respectful and understanding of chronic illnesses, it means a lot and I wish there was more doctors like you around, thank you so much.
Sorry to hear about your situation. Also thank you for sharing your personal story. This is a familiar story. Hoping you are able to get treatment for this condition.
My heart truly goes out to you for all you've been through in your short life. Reading your story and the depth of your knowledge, I would've never guessed you were only 14 had you not stated it in the beginning. I'm 43 and was diagnosed only 6 or 7 years ago. Legal stimulants such as Adderall and caffeine are the only things that have kept me functional and from losing my job. My body crashes at the end of almost every single workweek, and I use my vacation days as fast as I get them. It really sucks spending over half of my precious free hours in bed. I truly. hope the pandemic brings more awareness and research into this debilitating neurological disease. Thank you for sharing your knowledge and experience. 🙏
Mine started after shingles too... please keep on fighting. Take the advices in this video. Would also recommend creatine. You got this!
Have you looked in Aajonus Vonderplanitz?
You're body is not permanently damaged. You can recover especially because you are young.
Sir, thank you for posting this video!
Now I want every doctor that said nothing was wrong with me OR said it was all my head!
I want all those doctors to have ME/CFS for just ONE week and see how they would change their “opinions”…!!!
It would be fine to have it for a week. You would be able to catch up o n everything over the next few weeks, your friends will still be there and so wi ll your job. I think yo u lose your life and your dreams when you get M.E. Imagine if you had cancer and even your family thought you were lying, some might not say it to your face but it wou ld be obvious everytime theybgot annoyed with you for your lack of participation and contribution.
Diagnosed in 2019 with ME. Microdosing psilocybin has helped me considerably
Can you tell a little about how it helped? Did it help with your energy, fatigue other? Best to you from The Netherlands
Please reply too, how has it helped😊
Ayauaschua ceremonies 2024 …here I come!
Praise be to the mushroom 🍄
@leondevries478 Firstly it returned to me a sense of innate connection to the life force of all of creation. This condition was extremely isolating in the first couple of years. Social interaction and conversation was just debilitating for me, I felt overstimulated, overwhelmed and couldn’t make sense of anything, find words or follow a chain of thought. Family and friends thought I was crazy and simply refused to engage on the topic of me/Cfs. I felt very cast adrift and alone and afraid of the future and too ashamed and attacked and dismissed to try discuss it with anyone. Secondly I suffered terrible debilitating headaches 2-4 days out of every week, where the region of my brainstem felt so hot, tender to touch and swollen, now I might get a day of that every few months. My crashes now last 3/4 days not 2/3 weeks. The TMJ, tinnitus and vertigo are sporadic, and a warning sign now, not constant accompaniments to my days. The 10am nausea is rare now not daily. My eyes are no longer red, inflamed, watery and painful all the time. My daily all over body pain is gone, only returning with crashes. My heart rate is much more stable as are my cognitive skills. Fatigue is much improved. I CAN SLEEP! No longer that awful wired and tired. I’ve become extremely aware of my bodies responses to situations and people and remove myself swiftly when bells go off. Sounds no longer feel painfully loud, emotional lability is less, light sensitivity and wildly fluctuating body temperature control are now sporadic. Digestive issues much improved. I was taking a mushroom cap smaller than the size of my pinky fingernail, once a week, probably over a sustained period of about a year and less regularly later as symptoms improved. I made sure to eat 3 Brazil nuts everyday for the selenium after reading research regarding the malfunction of calcium gated cells in me/Cfs sufferers and the link to mitochondrial dysfunction. From the word go when I got sick this felt electrical to me. Much research on mushrooms capacity to induce neurogenesis. Just pulled out of a 3 day crash. Haven’t taken mushrooms in months as I’ve been feeling good, will take a microdose this week. A microdose does not give you a high…it’s not the point. I took one Ivermectin 12mg on the second day and one on the third. This sounds whacky but my last 3 crashes I’ve taken a 2 tablet dose of Ivermectin. I feel instant improvement the following day.
I trawled through tonnes of research when the state of Uttar Pradesh started using IVM as treatment & prophylactic in C19. The research coming back from Dehli’s largest hospital showed that patients treated with IVM did not develop long covid, which to me seemed the same as me/Cfs, further research from FLCCC doctors was enlightening. I thought it worth a try as I was in Zambia and it was easily available everywhere with no script. Coincidence of not? I’m so vastly improved this past 18 months. Best use DuckDuckGo for research as Google censors all the IVM research. The trigger for my illness was a series of viral infections and fevers over a 2 month period in the Phillipines, untreated as I was on a tiny island with no doctor and too sick to make it to the mainland. Lots of promising research going on with IVM in treatment of all sorts of tropical viruses. It’s ability as an anti inflammatory able to cross the blood brain barrier interesting. I stopped seeing medical doctors shortly after my diagnoses as under the circumstances it looked like a sure path to bankruptcy, having no insurance and realising how little they knew and having innate distrust of the pharmaceutical industry and endless prescriptions. I grow my own veg, eat simply, avoid processed foods, alcohol and sugar.
I was diagnosed with ME two years ago. I learned more about it in this video alone than from my GP. And this doctor is strikingly handsome!
Righttt❤ lol
The problem is, doctors, especially from my experience in the NHS, tend to use ME/CFS as a catch all diagnosis WITHOUT ruling out any other differentials. Yes, they may do a basic blood panel, then if that is negative you are labelled as having cfs, or fibromyalgia, or anxiety, or worst of all conversion disorder ; especially if you happen to be female with perhaps a history of depression. I have had viral meningitis 3 times, and during one episode I had seizures, leg paralysis and autonomic instability ; what did the doctors do? They slapped a label of FND and conversion on me BEFORE even doing an MRI of my spine or brain. I had all the symptoms of some sort of acute flaccid myelitis, yet they didn't even think to rule out any acute, potentially life threatening diagnoses before labelling me as effectively hysterical. I am still in shock to this day at the collective medical gaslighting that happened during my admission and at their refusal to listen to their patient. Their decisions were led by sheer arrogance and bias, and if you advocate for yourself or question their decisions ( any lay person would have the common sense to know if someone has a seizure and is paralysed that a scan needs to be done) this just fuels the narrative that you are 'crazy'. I have been left with severe weakness in my legs, memory loss, myoclonic jerks and symptoms of an autoimmune disease and also ptsd from medical trauma. I can't sit in front of a doctor without shaking with fear. Tell me doctor, how can we as patients trust you? How can we trust that we will be treated with respect, dignity and most of all receive the correct diagnosis and treatment when there is a culture of doctors hung up on labelling everything as psychological? Is it right that as patients we have to psyche ourselves up before talking to our doctors, that we have to censor ourselves in fear that you will not take us seriously? If we cry in your office through frustration or desperation you write in our notes ' patient was emotional and anxious'. Since when were normal, justified human reactions medicalised to mean you are hysterical or mean you are suffering from some sort of personality disorder.
It is terrifying to think that if you turn up to A&E with chest pain, for example, you will be labelled as anxious, and a cardiac cause will be missed? They say we should work in partnership with our doctors. That is bs. I have never come across a doctor who is not intimidated or put out by an informed patient who advocates for themselves.
ME is a real, devastating illness, yet how many patients are being diagnosed with this when nothing else has been ruled out? There is a whole host of diseases that could be the cause, and often times things like lupus or lyme are dismissed because the patient is seronegative, but you only have to read the journals to know that negative autoimmune panels do NOT rule out an autoimmune etiology. I once asked a doctor if I could have seronegative lupus ( I have many of the symptoms including the rash) and he looked at me like I was insane.
The long and short of it is this ; please don't assume all your patients are lying or malingering or has some deep rooted trauma that is manifesting in physical symptoms. Please don't assume we are ignorant either. Most of us have the capacity to read and research ; in fact you can never underestimate the power of a patient who is so desperate and tired of suffering to be their own detective and find the answer. Even worse for those vulnerable patients who do not have this capacity, god only knows how many are being misdiagnosed.
Firstly sorry to hear about your experience. You raise many valuable points. Thank you for sharing your experience. There are valuable messages for doctors and patients in there. Thank you.🙏🏼
I'm sorry you had to go through all of that. PTSD from medical treatment is real. I only had a bit of what you described and that was awful. I wish medical schools had a course in humility, so they could feel comfortable saying, "I'm sorry. I don't know what is causing these symptoms yet" Rather than misdiagnosis and gaslighting patients.
It will get better. They will find more answers. Hang in there 🤗
My aunt was DX with this in the 80s after mono. I was DX with pots CFS/ME and Lupus in 2015. My aunt has since passed away. ME just wiped her out. I wish she was here to see the medical developments. Im sorry to those with long Covid. But im glad to see a renewed interest in CFS/ME. Thank you for seeing us. Its awful.
I was misdiagnosed with depression even though I insisted something was making me tired and weak. I went from having an active life to nothing. So I became depressed. I sought help and treatment for the depression and felt better with welbutrin but I was still weak and fatigued. My psychiatrist told me to go to my primary and discuss CFS because it was not a mental condition. So I did. I took all my records back to my pcp and asked for help again. I was told I was depressed!!!
My son took me to another clinic where I was diagnosed with EBV....I had it for a year. Now I take nuvigil to function daily. But all I can do is go to work. No social activities. No outings.
I'm glad more providers are recognizing this condition. Thank you for spreading awareness.
Sorry to hear and thank you for sharing your story. hope things improve for you. Wish you well.
I was diagnosed with CFS including POTS in 2020 after a small stroke. I went from being fit and active to being partially disabled and exhausted to the point of collapse. I AM making progress and my determination that I WILL fully recover keeps me going through the dark days. Cutting out sugar, as much stress as possible, zero alcohol and getting loads of sleep/rest definitely all help.
How did you sugar detox, i have tried and tried, i know its bad for us. Any useful tips thankyou. suffering every day with this condition and it just makes you crave the sugar to get a lift of energy. What an awful condition it is.
I’ve been diagnosed by two doctors with fibromyalgia and I think CFS is in the mix. I’ve had massive fatigue (and some of the other symptoms you’ve mentioned) for two years. I did have non-symptomatic Covid in Aug 2020; diagnosed by PCR coincidentally when I was hospitalized for DKA (long Covid?). Winter of 2022 I lost 18 pounds and could barely dress in the mornings. Here’s my take: I’m DONE with doctors and lab tests and suggested treatments. The very act of chasing down a definitive dx and effective treatment can EAT YOUR LIFE up. I prefer to accept it and adapt to it. 🎉 Life is more than a diagnosis. 🎉
❤my feelings exactly. Having developed M.E in 1991. Not feeling well enough to visit the Doctors surgery I have had no diagnosis . A visit to the Doctors due to the onset of Fibromyalgia I was told that it was the most likely cause of my pain but no test were offered and so I just manage each day to do what I can or just bed rest after a few little jobs in the kitchen. 😢
I'm self diagnosed because I don't trust doctors to know what is going on with me since I have a history of anxiety and depression as well as complex PTSD. They'll label me mental. Other comorbidities include scoliosis with spinal arthritis, osteoporosis, food and environmental allergies. There you have it. Other things like ssri withdrawal, ascension symptoms and long COVID can complicate a diagnosis, so I don't have the trust or time to run to the doctor when all they want to do is prescribe another useless and dangerous drug. I'm self treating with stress reduction, meditation, magnesium glycine before bed, frequent rest breaks, limiting draining activities and relationships, keeping cool temperatures at home and especially in the bedroom, dressing in cotton, avoiding summer heat, gluten and lactose free diet(allergic), good nutrition, no alcohol, drugs, caffeine, prescription meds. Nature helps when I can get out now that it's cooler. I'm blessed with a darling husband of 35 years and our kitty cat. I'll take my blessings and am grateful for a previous life of travel, athleticism and creativity. Let's not give up on ourselves. Loving compassion to us all.
I was stricken with this syndrome in the 90’s, and am thankful I had a physician who didn’t dismiss what was happening, despite ruling out one condition after another. As horrific as Covid-19 is, I can’t help but be excited about the renewed attention and research toward CFS due to long Covid. I recovered quite a bit of my functioning, but the specter of relapse haunts me. Thank you for explaining this complex topic in an understandable way.
Thank you for sharing your personal experience. Appreciate your feedback. Wish you well.
Any insights on recovery
@@sublimestudi000 @LOLsnickersnort agree would be good to hear about insights on recovery. In my clinical experience I find in the initial stages of recovery it is really important to keep the environmental stimuli under check especially if stressful and gradually pacing oneself with increasing activity. Gradually getting a feel for ones boundaries.
@@PsychiatrySimplified do you treat me/cfs patients? I have seen long haul clinics in NYC and quite literally no single doctor I spoke to knew what was going on. Are you taking consultations?
To be clear I have been diagnosed me cfs post Covid.
He's describing my symptoms. This is the first time I've heard descriptions of my symptoms.
Hope you are receiving help. Wish you well.
Me too
Grateful for your work on this, my partner has M.E. (and the corresponding CFS) and has a new GP who, being imported from the UK, refuses to address it as anything but psychosomatic.
There are literally no other available GPs in the area.
She is therefore reduced to addressing individual aspects of her health outside of her previous M.E. diagnosis (I won’t go into detail but it’s a reliable diagnosis).
I mention all of this only to highlight how important it is that this type of work is not only done but more widely noticed in the medical community itself.
Again, grateful for your obvious dedication to this important work.
I’m sorry to hear. I hope with education this will change.
“Graduated exercise therapy” has been discredited as a stand alone therapy.
It is - a slide has been added from recent nice guidelines
Yes, thank you for mentioning that! I noticed it was in the list too. It has been widely discredited and removed from most official guidelines, last I heard. Derived from a study (PACE trial) that was found guilty of heavy confirmation bias among other issues. There was even a campaign and backlash from patients who were involved in the clinical trial, claiming that the trial results misrepresented their experiences and falsely indicating there were improvements. This type of treatment does more harm to patients than good. I find it extremely confusing that the one thing known about this condition is fatigue worsens after activity (post-exertional fatigue) and yet with Graded Exercise Thereapy patients are recommended to exercise and do the exact thing that makes the condition worse. What?!
@@thepaintedlady4637 although - its not recommended - its worth considering your own reaction to physical exercise. For me - I started timing acitvities - walking flat before I would get teh ME reaction. I kept walking area flat to avoid hills. For me I could build up a tolerance ofa 40 minute walk every day. I find resistenace exercises the ones which will trigger relapse.
I think having some level of exercise is important - if you can do it. If not - develop a toelrance to it. Do what movement you can safely, repeat it for 2 weeks, then incremetnally load it by a small fraction - progressive overload.
The guidlines were for encouraging mood changes via exercise. the writes did not understand that the things that bring you joy and contentment are the very things that cause the problem for sufferers.
Insidious.
@@gingerindian1141 💯 agree!
I do some things intentionally that I know will set me back a day or two because those things bring so much joy that it’s worth it!
Swimming in the springs
Light work in the garden
A walk in nature
All worth a two day set back for me!
The alternative is to curl up and die inside
@@jaynebennett8398 Yeah looks like your finding a way to balance yourself Jayne.
This is one of the best videos ive seen on chronic fatigue syndrome. Thank you very well done
Thank you 🙏🏼
Nice video Doc. Was pleasantly surprised watching this. In my 22 years with this illness, and being quite severe (nearly dying on multiple occasions), I've had some terrible experiences with psychiatrists in hospitals, completely not understanding MECFS and recommending dangerous outdated therapies. Was nice to see you actually do for the most part, understand what the illness really is, and that it isn't a psychosomatic condition etc. That unfortunate and outdated information and the neglect/abuse that goes with it, is still very prominent in mainstream medical circles.
So much of this is correct. Only thing I'd say is, as often mentioned in the community, that CBT and GET are often far more harmful than good. But yes you are correct in that the PHYSICAL aspects of the condition need to be improved if they possibly can be, before any increase in activity can occur. CBT is really only helpful for people to "learn how to cope" with the illness, rather than actually helping anything physically.
I've been pushed in hospitals at my worst, barely able to move, to try to 'exercise' in the rehab gym. My limbs wouldn't work and would just shake instead of functioning. The entire team started to say to each other "he's just not cooperating" and staff/dr's/psychs were getting angry and blaming me for not improving. It was truly one of the scariest things i'd ever experienced.
Internally I am one of the most positive and driven people you could ever meet (and quite a perfectionist admittedly, lol). But my body simply *cannot* keep up with the 100 project ideas I constantly have.
Thanks for the video and actually doing the research to understand this condition Dr Sanil, it's rare and very appreciated to find. Hopefully you are able to influence other medical pro's to help understand what's really going on with us.
Thank you for your comment and feedback. Much appreciated 🙏🏻. Wish you well.
“”the neglect/abuse that goes with it, is still very prominent in mainstream medical circles. “”- yeah so true. The well educated including the so-called medically qualified doctors also rudely pass comments saying it’s in your head, you are imagining things and especially in my place they also show faces and put you down by criticising you especially the doctors, that you are lazy. It’s just emotionally hurting to meet the shallow minds who criticise you when you actually go to them for a cure. May be we got this for a reason, to help the human kind in some way, probably to bring more awareness.
I've been there. A CFS therapist asked me to fill in a time table. When I took it to her she said " you are not doing anything". She thought me to be lazy. Prior to been Ill I pushed myself physically, working a lot of hours as a single mum of 3. I also had a lot of mental challenges. I had glandular fever in my early teens and so did my daughter. My thyroid packed in and I was aware of weird hormonal things happening. When told It was a mental health condition I could say No it's a physical condition. My theory is the body uses up something during trauma. Eg L carnitine or other amino acid or enzyme and that's the cause of cellular energy not transferring.
the truth is in the stats. and that stats establish that doctors are genocidal, homicidal, greedy peverts in need of their own body pile. they prey on the patients, steal their money on behalf of ther bosses and spout orthodoxies out of textbooks written by religious fanatics in Rome. nobody is honest; truth is what you pay for; might makes right and if you can't pay your rent your friends, family and colleagues will kill you. who cares about CFS, the entire discussion is fraudulent.
@@janice2992 l carnatine lot do with it but most of us are hypomobile and on spectrum albeit undiagnosed
@11:42 Removing toxic elements, like alcohol or other drugs, is good advice. Always. At the same time, these toxic elements are self-medication when everything else doesn't work. A doctor telling me to not self-medicate is a doctor telling me to suck it up and endure the pain. It is exhausting to never get any alternatives to these toxic elements. It is exhausting to always get the same advice about lifestyle changes, often ignoring that these changes might have already been tried out extensively. (This rant is not directed at you. I find your video very informative and helpful. My experience with doctors tells me that there is a significant lack of knowledge, compassion, and pragmatism in the medical field.)
I understand. Yes the dilemma between advice with a medical hat on without alternatives is a tough one.
Thank you. So many doctors don't take this condition seriously. I actually wish it was just a mental issue, then maybe there would be hope to get better. But I can literally feel my body broken and different functions in my body no longer working correctly. It's terrifying when it gets to be where I can literally feel like my body is dying. Whatever creates energy in the body, it's definitely not working right.
After a recent diagnosis of CFS, I am searching for a better understanding and your video did just that!! Many thanks. With brain fog, it gets overwhelming and hard to grasp., your presentation made it easier.
Thank for your feedback. I hope you get help. Wish you well. I really appreciate your comment . 🙏🏻
Thank you! Informational videos like this are absolutely essential for helping people with CFS and preventing stigma (especially stigma within the family). Often people around the individual with the condition will make harmful assumptions and judgements like "you're just being lazy", "you're just not trying hard enough or just need to exercise". Good information and expert explanations like this help to mitigate that by validating the experiences and reality of those living with the condition. I'm grateful to see that more physicians are choosing to try and understand rather than go down the road of medical gaslighting with this condition, hope this influences more physicians out there to help them get it.
Also I was glad you highlighted the hyperarousal aspect of this and may look into trying Clonidine for sleep. Had never heard of that before. In my experience hyperarousal makes sense - survival fears are triggered when you experience such severe fatigue and can no longer function as you were previously. How are you supposed to pay the bills, go to work, take care of children, get anything done? And then others around you can't 'see' your challenges with fatigue so it is hard to understand, that only increases stress levels because of the invalidation.
Thank you for your feedback.
Chemically-Induced Chronic Fatigue should be discussed. The more psychiatry and pharmacology gets involved, the sicker we get. Getting off is a separate hell.
Yes, I was prescribed Klink pin and Xanax for CFS 22 yrs. ago. My most recent doctor told me I had to come off due to the laws changing and tapered me too fast. That was 4.5 years ago and today I am 100% disabled due to coming off the vendors and 1 painpill. My sides never went up in 22 yrs. I could function every other day, now I can't. What the he'll are doctor doing???! They're making us sicker and more disabled.
so true
Im still on clonopon but keep it controlled. @pattilynnwahlsimmons
5 minutes in and this is fantastically informative!!
Glad you think so!
Just hearing multi pronged approach makes me feel Overwhelmed and sicker.
I have had CFS since I was 24 I got a viral infection and within one month I lost 20 lb and was what I thought dying. I have been living with this dreadful disgusting illness for 40 years. I'm 64 I've never been worse than I am now. I can barely function and I mean barely it's horrible. My complex care doctor doesn't even believe in CFS I've never had a doctor that really understands anything about it so I've just given up. I have tried so many different things to get my energy back to get the pain to go away every holistic natural thing you can think of and none of it has worked. I'm done I'm just fried cooked and over it. And at 64 I don't put much hope into doing a bunch of different things because I'm going to die soon enough. I cry all the time I have psychiatric problems I feel like I'm dead anyways but I'm not. Thank you doctor for making this video at least I know that one doctor knows about this dredded illness.
Wow same here
So sorry you haven't connectrd with anyone who understands! I'm also in my 60s and been ill since my early 20s. Western Medicine has been no help, but I e connected with some Eastern Medical professionals who understand the disorder and confirm my struggles. RUclips is definitely a blessing. Hugs to you!
@@Sillysillywithpearls you understand and that means alot
to me. Where are you now with your journey?
I've had CFS for 20 years. I was extremely active. I ran marathons, and triathlons, snow skied, water skied, worked out in the gym 4-5 times a week, owned a company, and traveled the world. I came down with pneumonia, and since that time, I haven't been able to run a half mile. Bedridden for over two years - it took forever to get a diagnosis. It's been brutal. I'm always trying new things - I never give up on trying. I want my life back so badly! I'm currently doing a green juice fast - flooding my body with only plants. We'll see how that goes. I have a healthy diet in general, but I'm so determined to figure this out! I pray one day something kicks in and at least gives me a level of energy to be functional! I truly understand your story and wouldn't wish this on anyone. God Bless.
@@c-p1976 thank you for your reply. I completely get it. You had a former life where you were on the go doing things you loved active and boom you get an infection and now you're pretty much bedbound and in horrible pain I would assume just from being hit by a freight train. I think I can guarantee you there is one thing you have not tried because I just found out about it and I'm checking it out. I am not saying it is going to be for me but I have to tell you about it. There is a guy on RUclips the channel is called Pain Free You and they go off of a book called no more back pain by Dr Sarno's. And it's a whole field called TMS. And I'm going to do my best here to explain. The guy that has the channel on RUclips calls it PDP perceived danger pain. He puts out a video every single day there are many doctors that believe in this and they have interviews long interviews with people that have been completely cured simply by using the brain to change your perspective on what is actually going on. It's not positive affirmations but it is changing the way the pain is perceived and in the face of being dead in your bed like I am you face the pain in a completely different way. And when I say face the pain I also mean face the utter utter exhaustion. There are many many doctors now into this and I think it would be interesting if you just checked it out just to see what you think. that's what I'm doing right now cuz I've tried everything else. I've tried every kind of diet, this that you name it I did it nothing helped. I'm sure if you put what is TMS in RUclips search you would find what it's all about. Anyways thank you for reading this long reply I so hope you feel better because this is not fun. God bless you too and Happy Thanksgiving.
You have explained,everything about my body, painful situation this is the best explaining. Thanks
Very good summery!! I have Fibromyalgia, ME/cfs, long Covid and adhd. I wish I had a doctor like you.
Sir, from the bottom of my heart, thank you for this video describing ME/CFS. I've listened to many hours of talks on this illness, and out of all of those, yours is one of my favorites. You are succinct and easy to follow and that is exactly what the patients suffering with this incredibly complex illness have been desperately needing. This is the perfect video for those affected to keep on hand for when (whether it be from family, a friend or a physician) they're met with that skeptical glare.
What bothers me the most is how many patients are being labeled as having a purely psychosomatic disorder. The link below includes Cleveland Clinic's definition. An uninformed eye would read that and immediately draw the conclusion that ME has no physical cause. Meanwhile, there are stacks of evidence and data to prove the contrary. Notice how your explanation of ME almost perfectly parallels CC's definition of a psychosomatic disorder. The most striking snippet to me is that doctors will possibly order a couple test, but without findings, they'll often refrain from ordering any more testing. This sort of mindset is what causes so many genuinely sick people to get tossed into a black hole, never again to be taken seriously by any medical professional. While there may be contributing psychological factors (as you described so well) there are ultimately severe physical manifestations. And that's only one component amongst many others that are each physical in nature... When given inappropriately, the psychosomatic label results in poor care, refusal of important and necessary testing and probably most importantly, little to no appropriate treatment. ME can be completely debilitating, with many sufferers unable to even leave their home. Very few people are aware of this, even amongst practitioners, because these patients in society's eyes may as well not exist. It's awful.
my.clevelandclinic.org/health/diseases/21521-psychosomatic-disorder
I didn't intend to ramble, I just want to be encouraging and express my appreciation as a patient to those who are taking this illness seriously.
I do have a couple of questions for you...
1.) On average, how long are your patients being admitted for?
2.) Are you familiar with two day exercise testing for ME/CFS? I imagine for inpatient treatment, this tool could be invaluable for you and your patients, especially when it comes to pacing via monitoring heart rate. If you're not familiar with this, I'll try to find the literature and will share the links with you. There's a doctor at Brigham and Women's who seems to be the pioneer in exercise testing for ME/CFS.
3.) Are admitted patients allowed a nutrition consult or trialed on any dietary changes? I know for many of us, food is daunting. We would love to change our eating habits but don't have the energy to navigate that process alone. If in the inpatient setting certain diet changes were implemented, patients could have the opportunity to experience any genuine improvement. With the knowledge of what works in hand, arrangements could be made post admission for how that patient will both obtain and prepair meals without exceeding their energy envelope.
Again, thank you so so much for the video!
Thank you for your feedback. We really appreciate it. Your comments are very insightful. I agree with all you have stated.
1. The admission duration varies but in all cases > 4 weeks.
2. We involve a cardiologist, physician, gastroenterologist, dietician, neurologist, psychologist depending on primary symptoms. for example - cases present with predominant pain (pain specialist ) or migraine (neurologist), gut issues (gastro), dizziness (cardiologist). Exercise testing (CPET) can help diagnose the PEM and monitor improvement over time. As you are aware long covid patients have found to have microcapillary clots in the lungs that may impede gas exchange worsening fatigue.
3. Yes dietary aspects are taken into account. One thing that tends to be relatively common is the heightened sensitivity to a range of stimuli (food, noise, visual, touch(pain) taste); this part can be explained to some extent by the hyperarousal and worsened by fatigue. So when patients are treated adequately - reducing hyperarousal / improving fatigue / improving cognition many of these heightened sensitivity symptoms can reduce. The gut microbiome plays an important role in pathogenesis.
However there is a range in how much individuals can then exert themselves - that becomes a trial and error - so it's sort of trying to come up with boundaries for a new normal. Also since many individuals with CFS can have perfectionistic traits; this psychological mindset shit becomes important.
Included amongst this is moving from 'identity linked to CFS / and symptoms) to develop an independent identity as many individuals have experienced illness for many many years and time is needed for a 'new identity ' to develop. This phase varies between individuals.
In relation to medical investigations - this should be taken seriously - as there are often a range of abnormalities that can be treated if identified - Vit deficiencies/iron def / Thyroid issues
As always - The above is not advice but a general approach.
@@PsychiatrySimplified brilliant! Thank you for such a thorough reply. When I searched your name, it appears you are located in Australia? Have you been able to develop working relationships with like-minded practitioners using similar methodologies as yours in other parts of the world? The approach you're using has the potential to change patients' lives in such a profound way, but is unfortunately so under-utilized that I don't know of a single practitioner (I'm in the US) doing anything like this.
Until the underpinnings of ME/CFS can be more fully identified and explored, I really see no greater potential for sustainable symptom and lifestyle improvement than what you have presented here. Bravo to you, sir!
@@MackLee23 sorry I somehow missed this comment. It’s difficult for me to comment on the approaches being used elsewhere but what we do know is that there is a paucity of a collaborative multidisciplinary approach to CFS which affects patients Negatively. Similar aspects apply to Australia. Mainly because specialties are fragmented which leads to fragmented care. William Osler said it best - “There are, in truth, no specialties in medicine, since to know fully many of the most important diseases a man must be familiar with their manifestations in many organs.” This quote applies to CFS/ ME a lot.
Aiming to educate GPs through training programs. Appreciate your feedback.
You are a genius! Thank you for making all this information accessible and on RUclips.
Thanks for the feedback.
Best video explanation of this I have seen. Thank you for listening to your patients and doing your best to help them.
Thank you for your feedback 🙏🏼
I’m a nurse who self diagnosed CFS after having what I believe was Covid years ago. Wellbutrin helped tremendously for a year, then quit working. Desperate for another solution. It’s getting worse daily. Cymbalta is a no go r/t fatty liver. Tired of being seen as lazy and losing who I used to be. I even use my mom’s extra handicap sign in my car because just walking into a store has me exhausted and short of breath.
Usually one agent is unlikely to change things over long term. If wellbutrin had helped. - usually agents stop working because other aspects are unaddressed. E.g sleep, hypesrsousal. Addressing those allows the activating agent to work better. This is one example. Essentially it underscores a comprehensive targeted approach
Look into Green Energy from Touchstones, it's a game changer!
This guy gets it. Thank you for the video.
A new video on cfs focusing on clinical evaluation ruclips.net/video/kaTCExuc1Ps/видео.html
I’m 20 days into taking Low Dose Naltrexone. After 19 months with ME/CFS I’m feeling the best I’ve felt since contracting CFS. Praying I’ll continue to improve over the next few months.
What dosage are you on? I’ve had ME/CFS for 45 years. I’ve just started LDN - hopeful. Hope you answer 😊
@@elainerobertson1988on it nearly two years helps fatigue IBS.but.not.muscle pain daily
How are you now?
@@Username4453up and down. I still need to pace and rest. The biggest difference is I bounce back quicker.
@@elainerobertson1988 4.5mg each night
Thank you for a clear explanation of this horrific and debilitating condition. I was very pleased to hear you point out all the elements that can be at play in developing ME/CFS and the connection to Long Covid. Clearly you show this is not a psychiatric disorder, but psychiatry can be useful in the treatment presented here, as seen from a multi-disciplinary approach. Depending on the individual (not every patient will have adverse childhood experience, for example).
However, what dissapointed me was your mentioning of CBT and GET without emphasizing the danger connected to those treatments. CBT as a therapy to accept the certain adaptations one should make in one's life can work very well. But CBT given from the standpoint patients are only ill because they have limiting beliefs is very damaging. And when you understand the mechanisms of exercise intolerance (which you apparantly do because you talked about it very well in the first part of the video), it's very strange you say GET is a treatment option. I know you meant "at some stage in recovery", but thats not clear. Also I think it should be stated very clearly exercise should be introduced very carefully ONLY when it's measured the exercise intolerance has diminished (I know you know this can be measured, judging from your other comments). And also has to be closely monitored. Especially when you take in account the personality traits you mentioned 😉 In most cases you dont need to stimulate ME/cfs patients but rather pump the breaks.
The strange thing is you mention this earlier in the video but forget to repeat this or make the connection with this part, when you mention GET.
A clear warning should be accompanying any reference to GET. It really can tip patient over the edge of the cliff resulting in such a huge severity if the illness they will not be able to recover.
Other than that I am very grateful for this video which can help lots of patients worldwide to get their physicians, psychiatrist or therapist re-think their view on this illness. This is much needed.🙏🏼
Thank you for your detailed feedback. We did put a slide with the NICE guidance that talks about the GET being contraindicated or used only as part of a supervised regime. We will release an additional video soon where we will stress this point further. Thank you for raising this issue. Point taken and appreciated.
@@PsychiatrySimplified thank you for your quick response. I'm glad to learn you will pick up this issue more in detail later. And again: very happy to see this illness being adressed properly by the psychiatric profession.
Got to say, when I first got this infliction I thought I was on my own.... I'd never heard of M.E. and when I got diagnosed found a lot of help and support online..... unfortunately a lot of MHS professionals wouldn't even acknowledge it....got to say you're amazing.....hit the nail right on the head......showed me a lot even I didn't understand but what I'm going through...I noticed a definite coronation between M.E. and long COVID... Keep up the amazing work. hopefully we can find an end to it 👍
Thank you for your feedback. 🙏🏼. Wish you well
Thank you.
I believe I have had this my entire life even though I am in my 60s. It has been something I couldn’t explain to anyone.
I have a neighbor who just drops by. She doesn’t understand, as amazing as she is, that I am trying to manage something that is taking away the energy I need to just make it through the day. I have this video now to have an intelligent conversation with her
Glad you found it helpful. Wish you well
I so whish you were my doctor. I dont have any treatment at all. No understanding GP here in North Wales UK. Still pugging GET and CBT. Been there, done that, no improvement in 25 years. Your video is the best ive heard and you give me a glimmer of hope when I have given up, endure the day, walk dogs when I can, stay active but the latest flare is the worst ever. Now geting POTS and dangerous to drive needed for my part time work. 69 and waiting for an optout now as its so bad. I have no fight left to keep going. No I am not depressed! Im just worn down with no help with pain or the crazyness of symptoms in my body that my GP says they cant help with unless any one gets worse and then they will treat.
So sorry to hear. It's unfortunate they can't refer you to a specialist with current symptoms. Hope you get the help you need.
Oh thank you, thank you! I “stumbled” upon your channel and at first glance I noticed the psychiatry specialty. After watching you explain so well the diverse components of ME/CFS and treatments suggested, I have much admiration for you. You’re internal medicine knowledge paired with the psych specialty is so refreshing.
I so want to get back to work and be well. Unfortunately I too feel as though I have been driving my own treatment.
I have subscribed and again, thank you so very much. It is the hope that is reenergized in me after watching someone who “gets” it.
Thank you for your feedback. We have just published a practical diagnostic evaluation a few minutes ago. You may find that helpful as well. ruclips.net/video/kaTCExuc1Ps/видео.html
It's taken 10 years to diagnose. I finally found a doctor who was listening to me. He diagnosed me in the last year. Mine has been triggered by covid. It's gotten worse in the last 2 years. The fatigue and pain are horrible to live with. It's sad because you look fine but you are far from it.
Sorry to hear. Yes it is an invisible condition in some ways but very debilitating. Glad to hear you are getting help.
me too covid reactivated mine....18 months...DOWN...its way worse
One note to the supplements listed - you may want to also add calcium to the list. Low vitamin D also hinders calcium absorption so it's likely patients need calcium supplements as well. That was my personal experience - I had pretty bad chronic fatigue and confirmed with my doctor that my vitamin D levels were very low. My condition improved considerably with magnesium and vitamin D, but then improved a lot more in a short timespan when I also added 1000mg of calcium supplementation daily. As far as I am aware, calcium deficiency won't show in blood tests before it becomes life-threatening, so it may be a good idea to try a generally safe level of calcium supplementation for a week or two and see if the patient's condition improves.
Thanks you for sharing. True
Wow I have never heard this one thing about not being able to sleep even tho I cant even move in bed at night!!!! My mind never stops racing it's so hard to sleep when you are so exhausted in pain and racing thoughts... I did not know this was another symptom add another to the multiple symptoms.... this is overwhelming!! Always feeling fluish... foggy brained..Wow I am your poster child for this horrible horrible dieses...thank you I'm not crazy imso thankful I came across this its filled in a few symptoms I have that I never k ew was part of all the rest of them!!!
Hyperarousal , insomnia are core features of CFS / ME and long COVID because inflammation affects the amygdala and also reduces deep sleep affecting sleep artchitecture.
Thank you I did not know that piece of the illness Thank you it helps to know I'm not crazy with running thoughts......God bless you
You mention cannabis I've tryed it once to see if it helps pain it had no effect couldn't tell I had it why is this is it the autism
I have ME/CFS. Thank you for your accurate description of the illness. Most doctors and psychiatrists have no clue what it is.
Clonidine never worked for me, but a similar drug, guanfacine made me feel almost normal. Caused somnolence, so be careful! But made me feel (almost) completely normal (nervous system-wise) for a short period of time.
Unfortunately, I didn't continue it because it would only work for a short period of time and the rebound it caused going off it wasn't worth it. The plan was to alternate it with Clonidine, but Clonidine doesn't do anything for me. With proper guidance, I'd be willing to try it again.
@@kyleday7135 Thank you for your feedback. Guanfacine is 10 times more post-synaptic than clonidine at alpha 2 which means it works better for cognitive issues - but of course also has sedation like clonidine, especially if prescribed in the day. Generally, medications in CFS are about targeting symptoms. Guanfacine can target the milder end of cognitive Sx but cant address significant fatigue. Similarly - allodynia is not addressed by alpha2 and requires NA potentiation included. A single medication is usually unable to address all the domains of CFS.
@@PsychiatrySimplified Thank you. That makes a lot of sense. I am generally not comfortable taking new meds as in the past, psychiatrists (and other doctors) that don’t understand what ME/CFS and hyperadrenergic POTS is. So they have no clue how the drugs they prescribe are going to affect pathophysiology of the disease. The wrong meds can land us in the hospital and then before you know it, you are dependent on high doses of anti-anxiety medication because of the harm caused.
I did some research on your explanation regarding Guanfacine, and what you said makes a lot of sense. I’ve enjoying reading about prefrontal cortex as well. It doesn’t seem mine is very performant as my executive function and frustration tolerance is just embarrassing.
There’s a lot more research/information since I first tried guanfacine many years ago.
I did have a good electrophysiologist/cardiologist near me, but it kinda bothered me how he understood POTS (he does research on it) but not the whole ME/CFS picture like you do.
Is there any other particular drugs in psychiatry that you think can be very helpful for ME/CFS with hyperadrenergic POTS subtype? Any good ways to strengthen the prefrontal cortex?
And if you happen to know any good psychiatrist in the Dallas area of Texas in the United States, please let me know. But I certainly don’t expect that there are any.
Thanks again for your knowledge! We need more people like you in the world.
Note: You certainly aren’t obligated to answer all or any of my questions and won’t be offended if you don’t.
@@kyleday7135 I've covered management here - although it's Long Covid - big overlap so cover pots as well. I think it will answer a lot of questions and importantly evidence based psychscenehub.com/psychinsights/long-covid/
This was extremely helpful! How do I find a doc who takes this seriously and will treat it as such???
Thank you for your feedback. The first point of contact should be your family doctor and then appropriate referrals based on symptoms. Wish you well
Coxsackie b4 hard backed virus off contaminated water was the day my entire life changed. Virus found be in brain cells then diagnosis of ME. I cannot say thank you enough Dr you are a breath of fresh air, a huge relief.
Interesting. I suspect I have ME, but my symptoms have always been dismissed as psychological. I've been depression free for many years now and my cptsd symptoms have also improved alot but my fatigue and pain has just gotten worse. Hard to believe that doctors and people in general actually think people want to miss out on so much of their life because they're lazy. Nice to see that you meet your patients with respect and an open mind.
I would do anything for the ability to take a shower (or anything else) without being tired afterwards. Really hope I get to experience some advances in this field when it comes to diagnosing and effective treatments in my life time.
Sorry to hear. This is treatable. Hope you find appropriate medical input. Wish you well
ur condition sounds exactly like mine. depression and cptsd improve but my body got more and more weak and tired, and gradually more symptoms like severe brainfog that feels like dementia
@@sekischro5093 sorry to hear . Have a read here more detailed - options for treatment - articles on CFS are also there psychscenehub.com/psychinsights/long-covid/
@sekischro5093 a more detailed video on the interplay between the brain , endothelium, ANS , MCA , and neurodivergence. ruclips.net/video/dIspvIMws2U/видео.html
Researchers are working on this from many angles (they just need more grant money) I have had moderate ME/CFS for 5 years. I have tried about 75 or so medicine and supplements. Still, the most effective for me is PACING. Meditation and mindfulness help me be in tune with my body to recognize when I need to rest. I have to lay down after shower too. Hang in there. You are not alone
Thank you for this info and breakdown of CFS. I've suffered years with it...
Thank you for feedback. Hope you can get help. Wish you well
I’m diabetic with fibromyalgia. After having 3 flavours of Covid over the last couple years I’ve never regained my energy. I describe it as an old iphone. You charge it to 100% make one call and it’s suddenly 20% it’s rough. I’ve been off work 5 weeks now because the body decided to freak out and explode into what looks like but isn’t chicken pox. Can’t walk 3 blocks without seeing stars and feeling like I’m going to pass out right now.
Thankyou for yr non judgemental approach and reasoned overview. Heartening!
Thank you for your feedback.
Yes, it's very complex. Thanks for sharing.
I'm currently awaiting for my appointment with my Rheumatologist after going so much bloodwork and even seeing a cardiologist. I've spoken to my orthopedic doctor, neurologist, psychiatrist, and pain clinic specialist. Each one was treating me for something different since I've been diagnosed with BPD, PTSD, anxiety, depression, buldge disc in neck and low back after being in multiple car accidents over the years. I pushed through all my injuries and worked in the health field for 20 years. I went from running, doing 5ks, working 50+ hours a week , swimming, traching, dancing, boxing, and international travel...to now barely getting through daily activities including cooking or doing the laundry. Driving, grocery shopping, and even doctors visits can drain me for the rest of the day. All these specialist brushed off Fibromyalgia and CFS for years. Now that I'm actually getting worse, I refuse to get any more medication or pain injections until I speak to the Rheumatologist next week. I'm on short term disability now, and putting my health first.
I have chronic fatigue syndrome it is a debilitating and life changing condition it takes all my energy to do basic housework and I "drag" myself through the day ... I have "brain fog" and it's hard to retain memory ... I was diagnosed in my 40's I am nearly 60 .. I still have the same level of lack of energy after nearly 20 years ... It is debilitating and disheartening because I was very active and in full time work before I was diagnosed with chronic fatigue syndrome
Sorry to hear. Did you seek treatment?
@@PsychiatrySimplified yes I am under treatment... I was diagnosed in my 40's and have been on a doctor's care plan for my illnesses since then ... I appreciated your lecture and your lecture has gave me extra information about chronic fatigue syndrome that I wasn't aware of ... Regarding the impact of the neurological aspects ... In that regard I can understand the anxiety and stress issues I suffer also the nervous system issues ... my overall illnesses and conditions and how chronic fatigue syndrome contributes to some of my medical issues thank you sincerely for your straight forward way of explaining chronic fatigue ... It has really helped me both understand this terrible condition but also understand the mental aspects I suffer .
@@maxinebaker4489 thank you for your feedback. Wish you well in your treatment.
@@maxinebaker4489how r u now
Not been diagnosed but my tiredness started a few months after the birth of my daughter so started way before covid 8 years ago
It’s very difficult to get a Dr to diagnose CFS. They dismiss it. Tell you it’s all in your head. It’s very frustrating. I’m self diagnosed so there is no Dr to treat me/my symptoms. How would you suggest finding a Dr who is willing to take this on. Thank you for actually acknowledging CFS exists, and being willing to put info out there.
It's very difficult to answer this as the presentation is varied. Usually the general practitioner or family doctor is the main point of call who then coordinates care with other specialists depending on systems involved or symptoms identified. But ultimately also comes down to the health system structure. Wish you well.
I have CFS, Fibro, IC, lupus (mild), Srogen's. I can manage my symptoms now & practice good self-care.
I was diagnosed with fibromyalgia many years ago. In 2016 I was diagnosed with Polyarteritis Nodosa. Now, I am thinking about CFS. I’m exhausted all the time +++
Sorry to hear . Hope you have medical input
great presentation I have been suffering w mystery symptoms ever since i had elevated EPBarr markers approximately 5 years ago. I try to tell physicians symptoms which are crazy indeed which include brain fog, joint pain, tingling in the arms n legs, and a few others. many days I feel like ive been in a 6 hour boxing match . this presentation is great for patients and physicians. I just hope I can find a doctor like this stateside
My daughter has it because of Epstein Barr . She’s had it 7 yrs . She was at Uni. Now certified disabled . She was full of life before this .
I was initially thinking, as per some other comments, how well you were explaining Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) (ME/CFS) and found it very informative and interesting until I came to the treatment protocol. What is Graded Exposure Therapy? Do you mean Graded Exercise Therapy (GET)? I see you have used a snippet of the latest NICE guide lines but have missed out the relevant text.
"Graded exercise therapy is a term used in varying ways by different services supporting people with ME/CFS.
In this guideline, graded exercise therapy is defined as first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active. This definition of graded exercise therapy reflects the descriptions given in the evidence that was reviewed, and it is this approach that the guideline says should not be undertaken. An individualised approach that should be taken for people with ME/CFS who choose to undertake a physical activity or exercise programme is described in recommendations 1.11.10 to 1.11.13."
This clearly states that GET should not be undertaken and an individualised approach is required, see below link. There is also no mention of a Post Exertional Malaise (PEM) assessment (not sure if assessment is the correct word though I am sure it starts with an 'a' but I know it is a questionnaire) which is used to inform if any exercise should be advised or if pacing would be more beneficial. Pacing is something you talked about earlier in your video together with not overdoing it, so I don't get why you have then go on to suggest GET as a treatment.
www.nice.org.uk/guidance/ng206/chapter/Recommendations#managing-mecfs
Full recommendations: www.nice.org.uk/guidance/ng206/chapter/Recommendations
I wasn't diagnosed until a few years in to the disease, during this time I pushed through the fatigue and the disease has slowly gotten worse, to the point I constantly have Post Exertional Malaise and associated symptoms. I truly believe that had the disease been diagnosed earlier and I had been instructed to listen to my body and to pace myself and not push through the fatigue to increase my physical fitness as GET advocates, that I would still be able to function today rather than spending most of my day in bed unable to walk more than a few steps. Adding a diagnosis of Fibromyalgia (FM) also confused the issue where exercise is more likely to help some sufferers, but as I score highly on the PEM scale I won't be doing any thing other than pace myself for the foreseeable future despite what any of the specialist team decide.
Recommending GET, given the latest evidence and guidelines, is surely leaving oneself open to litigation should a patients symptoms become worse or have I got it totally wrong?
When you use Cognitive Behavioural Therapy (CBT) is it the type that teaches a patient how to cope with their symptoms or the type that tries to cure them of the disease that is in their heads? I am guessing the former but it still surprises me how many clinicians still believe it is a psychosomatic disorder?
I am very interested in the part about diet and nutritional supplements and your thoughts on whether a clean diet, free from inflammatory foods such as processed foods, sugars and ??? grains (brain fog kicked in, what is the word, highly refined?) has the same effect as the supplements, as long as no deficiencies are detected, as this will promote a healthy gut, see joinzoe.com/about-zoe
This ties in nicely with my next point
I am also very interested, in fact fascinated, in Faecal Microbiota Transplants / poo transplants (I am going to check if you have done a video on this) as I believe the gut microbiome is an important aspect of the disease especially in people like me with a comorbidity of an autoimmune disease. I think that when this treatment is routinely used, it will benefit a number of diseases. The microbes in the gut have more influence on our bodily functions than we are currently aware of and have an important part to play in our wellbeing.
I don't usually comment although I do like to rant in person, as the typed word can often be taken out of context but in this case thought that pointing this out could benefit someone in the future. You are welcome for the many spoons this comment has used up, thanks for believing this condition is real, all the best.
Thanks for a detailed comment. Graded exercise therapy is the term - it was something that I didn’t pick up on until after video was uploaded so corrected it only in subtitles. We added the slide to provide some contract. NICE has as you have outlined changes it’s stance on GET. There are assessments for PEM as well. This video ofcourse is very basic and for general education only. So the details of research and controversy around GET is something we avoided. Ultimately it is individualised to the patient. We will be doing a video on gut brain axis and microbiome soon.
Thanks again for your detailed comment.
I’ve written a few articles on the Gut brain axis and inflammation in depression as well. psychscenehub.com/psychinsights/the-simplified-guide-to-the-gut-brain-axis/
GET and CBT are not effective treatments for ME/CFS and have been abandoned by UK's NICE and in every developed country. UK was the last hold out due to politics and one man's ego.
Thank you for this comment. Sadly, he doesn't seem to take it seriously. (As usual, with this illness...)
Thanks for this comment. GET , for ME patients, can make them permanently worse.
I understand you more than the others
amazing video! I have CFS and its exactly like you describe
Thank you for your feedback. Hope you get the help you need
Here is a new video on this topic focusing on the clinical evaluation ruclips.net/video/kaTCExuc1Ps/видео.html
In my area most physicians won't even address my cfs. I am glad I am a self read nurse practitioner. I have had to ask my physicians for treatment of each individual symptom without naming the disorder. If I bring up the fact that I was in bed for 3 years due to cfs both my doctors blew me off. There are no cfs specialists in Missouri. But I found that NADH and magnesium plus vitamin d really helped my symptoms alot. Thanks so much for not ignoring this debilitating illness
You’re an incredible doctor
Thank you for your feedback 🙏🏼
I would love more information for someone like myself who had been diagnosed with CFS/ME, Fibromyalgia but also has Bi polar disorder type 2, PTSD and serve anxiety.
Medication such an Cymbalta has not worked for me on neither a psychological or pain level. In fact the symptoms I got from the medication just made me feel worse.
I have tried this 3 times now and everytime is the same result. Excess sweating which is hard when I struggle to control my own body temperature and heat is my worse enemy.
Life is an absolute nightmare and getting the actual correct care and treamemt in your own area would be amazing.
Thank you for your videos. I am finding them very insightful .
There is an overlap between CFS & the conditions you mentioned because the circuits involved are the same and there are common pathophysiologies. This video may clarify this - ruclips.net/video/dIspvIMws2U/видео.htmlsi=B-epwW40_fUcuINs
Thank you! For 9 years I've been going to one doctor to another, hopelessly explaining them my issue, but nobody would understand me((((( Everybody would prescribe something, but nothing helped. At last, one brilliant gastroenterologist to my surprise told me I had to take antidepressants! I didn't believe at first, but anyway I found a psychiatrist for the first time in my life. She prescribed me Lamotrigin and it worked almost immediately! Afterwards we added Zoloft, Stresam, and this formula steadily works for me.
Thank you for your feedback and sharing your experience: glad you are receiving the help.
After 2 pregnancies,then getting the Epstein-barr virus I have had CFS for the past 32 yrs. .My life has literally been stolen,have been on this journey alone as my family does not understand,care and refuse to believe ..irrelevant of seeing with their own eyes.I pray for dead each night.
Look for cfs forums . Speak to other people for support . Maybe show them this video. 💜
I am so very sorry to hear that. CFS is very real but you need support from family and friends. Research as many videos as you can. Nutrition and rest and being in nature on the earth is so good for you. No easy cure or fix. It’s heartbreaking to hear that those close to you don’t believe you.
It sounds like a living hell for you. 😢😢
My daughter is currently going through this. She also had the Epstein Barr virus. She is only 24 and I pray she can recover quickly. I believe it is possible.
Totally get that. No support. No one here with me. My sister and daughter keep making plans for me. They dont get it
House is falling apart around me. It goes on.
So happy to hear your video. Finally someone who acknowledges CF. I have suffered from this for so long, I wish physicians would recognize this. I felt like you were talking about me.Thank you very much. Just subscribed and liked
Sorry to hear you experience this: yes it is a disorder that requires more recognition. Thank you for your feedback. 🙏🏼
I'm currently experiencing a severe relapse of CFS post-covid, so now going to look for the video on that. It's scary and sad because I did manage to achieve a measure of recovery for a few years (maybe 80%), and I had returned to work. But now facing the difficult reality that I may not be able to do either of them, I get up take a shower, make breakfast and am already at exhaustion point. This is heartbreaking and terrifying...
Sorry to hear that. Hope you get the right treatment.
Exactly my position, was managing M.E well with pacing and resting. Post Covid, my symptoms have got significantly worse, I'm off sick and unsure I can return.
I had a relapse as well after taking a short course of antibiotics. I was about 80% recovered too.
The scariest part of this illness is how much time it takes to get some progress and better tolerate exertiom vs. how small of an occurrence it takes to undo all the progress and put you right back into hell. And now especially when covid is around.
I hope you are getting better..🙏 Are you having a Lyme disease?
Thank you for bringing this topic into the light. I’ve had chronic fatigue syndrome or fibromyalgia maybe, I honestly don’t know which, and the problem I generally face is NOT that I am entirely dismissed, but I haven’t found a doctor that is willing to diagnose me, because they say it’s too hard to diagnose and they want some other doctor to diagnose me 🤷🏻♀️. Sometimes my doctor will treat certain symptoms related to this condition but I’ve never been diagnosed with a condition I’ve had for about 25 years. It’s really frustrating. I had already retreated from society due to general exhaustion when COVID came around, so self isolation was no big deal for me. I also live in an isolated are where there are very few people so I was able to avoid COVID.
Sorry to hear. I've covered assessment in more detail here - ruclips.net/video/kaTCExuc1Ps/видео.html
@@PsychiatrySimplified thank you 🙏
Thank you for your answer and attention. It is so hard to get doctors to properly diagnose me, I have described my symptoms and they ask me about fibromyalgia but won’t diagnose me. It’s really hard to be sick with something that is not diagnosed, because as long as it is not diagnosed, I can’t explain to anyone why I am sick all the time. I can’t tell people I have fibromyalgia because maybe it’s something else and similar and I feel I would just be lying or sounding crazy. Even though you are just here on RUclips, it feels good that you responded to me, because it makes me at least feel understood. Thank you so very much. 🙏
This is quite an amazing presentation. Thank you! 🙏🏽
Thank you for your feedback. 🙏🏼
I soooooo soooooo agree. He is so amazing with breaking things down.
I think it's important to note that while the medications you suggest may be evidence-based for treating specific symptoms in the general public, there have been no double blind clinical trials conducted on people with ME/cfs. The evidence for their efficacy in ME/cfs is anecdotal, based on clinical experience.
It is extremely difficult to conduct RCTs in CFS/ME for many reasons 1. The condition is heterogeneous. The permutations and combinations of patients is huge 2. There are varied criteria for CFS /ME 3. If a single medication is considered in RCT with CFS - evidence of it working or not working is very difficult to generalise or extrapolate to other patients. It is all based on clinical experience extrapolating from psychopharmacology, clinical experience and evidence from other disorders. e.g. We know the effects of clonidine - we can apply those to hyperarousal in any condition. We know how stimulants work - we can extrapolate that to other conditions. e.g stimulants used in fatigue in cancer or other inflammatory conditions.
Agreed it's at best a mooted subjective theory that these type of pharmaceuticals have any use in ME or CFS at all.
@@spense5905 they can make a difference when hard appropriately: as they say Evidence medicine can lead to the ecological fallacy - group statistics don't always apply to the individual. Pattern recognition and clinical expertise can
@@PsychiatrySimplified I respect what your saying but the problem is I suspect the condition is a systemic organic disease & not primary a psychiatric condition.
There are several cases like Sophia Mirza who died from CFS & was treated purely as psychological patient to the point they broke down her door & sectioned her!!
During autopsy she was found to be suffering from a chronic active inflammatory disease/infection like herpes zoster. (Horror stroy)
Professor Simon Wessely has characterised the condition as psychiatric when in fact evidence is pointing to an organic cause.
Dr Charles Shepherd caught Chickenpox & then suffered CFS.
He openly admits that his thinking previously was it was some sort mental illness & now advocates for patients.
Biological organic aspects to the condition need to seriously looked into.
@@spense5905 completely understand and agree with your point of view. Both saying the same thing. This is a biological systemic condition that affects the brain ( that's where psychiatry comes in - different from psychological approach). I agree that patients have been labelled as ‘psycholgically unwell’ without looking at the biological aspects which is very unfortunate.
Natural treatments helped keep me functioning.
Can you be my doctor please?
Do you recommend Whole Foods plant based diet as well?
I have found that infrared sauna can help the wired fatigue. I bought a used sauna and use it every other day. Also, I'm on a stimulant and low naltrexone which helps a lot. The overall fatigue is still present so pacing is very very important.
Thank you so much for sharing your personal experience. There is evidence for infra red sauna ( small studies) but personal experience is valuable. Also stimulant and naltrexone is an evidence based combination. Wish you well. Thanks again. 🙏🏼
I just bought one. Mine is not full body so it takes time for me to get full body covered. I am hopeful.
Which stimulant?
@@ikyathay2998 Modafinil
@@gmbowdle thank you!
After all these years of suffering from chronic fatigue, I realized it was heart damage from prescription medication as a teenager. I’m 49 and finally treating myself naturally and eating healthy and I feel better than I’ve ever felt. Not 100% yet but I’ll get there. I pray for everyone who suffers from any ailments because doctors will only make us worse.
How did you realize it was specifically derived from heart damage from medication in your teens? Have you had confirmation of this from a professional?
Yeah doctors have only made me worse and gaslight. And caused greater damage and symptoms then thrown away and charged thousands. Yet everyone else i know say doctors heal and to go to them
This is absolutely brilliant
Thank you for your feedback. 🙏🏼
I have 0 pain
No Pots
No triggers
I had my uterus removed due to extreme endometriosis
Symptoms
Adrenal fatigue
Hyper sensitive lymphatics
Wired tiredness
Occasional migraines
I am taking Vit D I was at an 18 on scale of 30-100
I am taking supplements to boost adrenals, and detox my liver... I just started Vital Adapt by Natura and 2nd nature liver support and detox with NAC and milk thistle...
I finally have a little energy....
We are hoping to release a video soon on CFS, LC that goes into the neuroscience further. Stay tuned.
Here is the video released - ruclips.net/video/dIspvIMws2U/видео.html
Long covid here. Chronic Fatigue Syndrome started during it. I don't fall in the conventional diagnosis. I sleep a lot. Just sleep. No problems sleeping. No energy and very easily winded. Somehow I know that physical therapy is NOT a solution. If I end up felling a little better and overdo it... I end up putting myself back by days. The recovery rate is extremely slow. The AMA backed, traditional, route is not the snswer. They are part of a business model that I'm not in.
This is a very typical presentation. Have a listen to the two additional videos we did on CFS and Long COVID . Sleep disorders / significant day time fatigue even to the extent of day time excessive sleepiness can occur due to the effect of inflammation on PFC and striatal areas significantly affecting Dopamine. But also that the sleep even though the person sleeps is not necessarily restful I.e REM hyperarousal is often present with decreased NREM deep sleep . Some individuals even get a diagnosis of type 2 narcolepsy. It is treatable - ADHD phenotype ( a vulnerability) can present like this .
Diagnosed recently, at 63, with ADHD. Had a different therapist say I was definitely on the autism scale. These diagnosis explain a lot for me. I had a thymoma removed in June of this past year. I had COVID in late February, 2023 which lead straight into long COVID. I was so sick that I was sent to ER with instructions for many tests. That's how they found the thymoma. CT Scan. Anyway, thanks for the advice and amazing call on the ADHD diagnosis. Dopamine. Check!
Oh, and one more thing I forgot to mention, I've been diagnosed with M G, the autoimmune hick up. I present no outward symptoms, thankfully, but it may have something to do with the inflammation issues.
Im so damaged and broken from this condition. Its totally broken me. And now im mentally broken i get support and care
Had it rapid onset 1997 . i was pregnant so my white blood count was raised for months so i got the EBV diagnosis
I now have a lot more conditions and im not sure if thats a blessing or a cure
Us long haulers have been through absolute hell . Mine was a hospital admission in 2016 and at the same time a cleaner stole things from me and some of it treasured
Im keeping an open mind
Just to say as well that a lot of us cannot afford vitamins due to the cost of living crises
I eat well. I dont eat processed food
I drink lots of milk and eat dairy products
Im watching this bit by bit and like i said i will keep an open mind
Look into Cordycep & Reishi Mushroom tinctures, they are really helping people with CFS
Thank you for posting this information. I could relate to everything, from the childhood trauma, to the HPA axis dysregulation, to the thyroid problems. I think I’ve actually had mild CFS symptoms for my whole life, but was high functioning until my mid-thirties. It took 15 years to get my Hashimoto’s diagnosed. Five years ago I had my thyroid removed due to thyroid cancer, and the CFS kicked in full force. I have no life. I possibly have one or two good days a month and then I overdo it. My exercise intolerance is horrible. And I get nervous and jittery and exhausted after exertion. I’m trying to slowly build up my exercise tolerance. I’m walking 5 whole minutes a day. I’m tired and frustrated. At least there are doctors in the world like you. But they don’t exist here in the U.S. I had hyperparathyroidism that developed a few years before my thyroid cancer was found. It caused a lot of body pain. It’s existence was quite evident in by blood and urine tests. Yet they just kept saying I had fibromyalgia. I give up! How blessed your patients are to have you!
Sorry to hear. Hope you get appropriate treatment. Wish you well.
ruclips.net/video/HGJiLwH1bKg/видео.html
I used have chronic fatigue syndrome. Ever since I started thyroid therapy and eat low carb I don't get tired.
Thyroid dysfunction can be associate with fatigue and many individuals with CFS have sick euthyroid syndrome - which does not get Rx if only blood tests are looked at. Glad to know you were able to overcome this. Thanks for sharing.
I have a novel idea...from a 35 yr long sufferer of yuppy flu in the 70s ,to ME in the present day.
SIR...you need to speak to ALL of your colleagues ....tell THEM to listen to their patients...,take their patients seriously.
I've had a 35 yr.lesson in frustration to the point of not going to another Dr. Ever in my life again!!!
I just watched a nurse on RUclips blow the whistle on drs. In Florida and how all people were wrongly treated for covid19....all in the name of PROFIT. ....and you want me to trust drs.!!!!
Sorry....you may be one of the very few drs. That are sincerely trying to help people. I was left in such pain I didn't want to live any further. THIS IS INHUMANE..to leave people suffer for decades, all the while I was told I had a mood disorder.....who wouldn't be moody after being dismissed for decades...
DONE MY RANT!!!
I hear you..has been almost 30 years for me, to weak scared and broke by the many treatments, absolutely horrific...def have had enuf!!!
Care and blessings🙏🌸
Please rant on! ANYONE THAT LIVES WITH THIS AWFUL ILLNESS DESERVES TO BE HEARD
Western Medicine is not aligned with healing, contrary to general belief. The AMA has strict rules for those who choose to be members. Alternative methods are not allowed to be practiced, and a syndrome not officially "recognized" essentially can't be treated. Docgors like the creator of this video are a blessing because they put human well being above their careers
@@Sillysillywithpearls Western medicine is based on evidence. It does work. This very video is evidence-based. Wake-up to yourself.
You watched 'a' nurse on RUclips. I guess that's great evidence of patients being wrongly treated for Covid.
thankyou so much for this, i have had ME/CFS for 20 years this year, i was 38 and acquired some major infections, i had a cold that burst my eardrum to let the gunge out then i got a strep throat which was so bad i was spitting in a cup and the worst the doc had ever seen. I have always had issues with hayfever as a child always in bed with extreme hayfever ear problems and shingles so i was inevitable i suppose but after these last infections i watched my father die and i know that was the trigger as i felt all my neurons firing in my brain that night. I have super wired nights awake till 4am sleep till midday, pain, fatigue, pem, etc etc. You have nailed it with sensitivities to chemicals and environment. I have recently been given steroids which have mad a huge difference but i am sill very unwell. I have lost my carer and social life but i wondered what is the Staphylococcal toxoid vaccine?? i wonder as Strep throat was the last big infection i had and i just know its my immune system and if this injection would do something. The strange thing is when i get head colds i feel that my ME/CFS has gone?? ( this happened twice) do you think my rheumatologist would give it to me??
This is a medical decision that your doctor will make. It would be helpful to discuss all the treatment options with your doctor. You are also reporting symptoms of being wired, sleep issues etc. It's important to ensure that any neuropsychiatric symptoms are also addressed appropriately. Wish you well
I got ME/CFS at 37yo, I'm 51 now and slowly improved from bedbound to housebound to moderate now. The mRNA covid vaccines and booster helped both objectively and subjectively after 4-6months after the jab. Looking forwards to my 4th Jab next month. Colds, flu, flu shots never affected my CFS negatively.
@@larryc1616 thanks for sharing your experience. Interestingly there have been similar anecdotes of long Covid improving after vaccination in some individuals.
Just sharing, I had had Strep throat for nearly a month before I have symtoms of CFS.
Hey man you're videos have been extremely informative and you seem like you are way more understanding and knowledgable then the majority of psychiatrists and doctors I've been to over the years. I live in Australia and have been struggling with chronic fatigue and adhd symptoms for many years now. Was finally put on vyvanse after trialing many different antidepressants and obscure medications such as memantine, valproate, modafinil/armodafinil among others. Vyvanse at 30mg has been the only medication that has helped with my brain fog/concentration and fatigue issues. Recently my doctor added clonidine to take at night as I was still struggling with sleep issues and so far it has really helped with falling and staying asleep, only on 0.075mg so half a tablet. You mentioned this combo in your video, so in your experience does it take time for the clonidine to work for ADHD and anxiety symptoms as so far it has helped with sleep but I'm feeling a bit more groggy then usual upon waking which is a problem as this is one of my most prominent symptoms. Is this a common side effect and does it pass with time and/or a dosage increase?
Thank you for your feedback. Clonidine has a dose range. It is effective for range of symptoms including circadian rhythm dysfunction, anxiety etc. In general the dose of stimulant e.g vyvase vs clondine is balanced to provide an optimal balance of combating fatigue vs Rx sleep.. Vyvase doses are at Maximum of 70 mg. It is difficult to answer individually but here is a video on clonidine Clinical Application of Prazosin & Clonidine - Role of Alpha (α) Adrenergic Receptors (α1 and α2)
ruclips.net/video/TioM9NymZXc/видео.html. Also we have done a video on stimulants. Wish you well.
i was a patient of Dr Nancy Klimas univ of Miami 1989 and got the diagnosis then look at her videos she the foremost expert
Excellent lecture, but here in US no hospital keeps you longer than 5 days. Usually 3 days. At the end of your stay, you leave dead or alive.
It is a challenge. Agree.
Pretty sure I was in the hospital for over a week after having my kid. I don't think this is a rule in America, probably just crap insurance or lack of garbage.
This is great. Love it. Thanks you. I do feel like cfs , fibro are one in the same.
Thank you so much for this video. I was diagnosed 5 years ago after a few blood tests by my GP. I have been pushing to see a specialist ever since. The best I have got is a referral to fatigue services in Bath, which I am still waiting for. When I was diagnosed I was given amitriptyline and sent to a psychiatrist who told me to pace. I have never felt so unsupported and alone in my life. So I took to Facebook to join groups and get help from other sufferers. I tried many approaches. Now I use LDN. This is the only thing that has improved drastically most of my symptoms. The only symptom it has not touched is the debilitated body when I first wake up. Until I start moving it's awful. Is there any meds I can take for this? I've noticed I will sleep for just 10 minutes and have a lot of dreams in that short time. Has there been any sleep studies done to understand if sleep quality or type of sleep is causing some of these problems?
While we can’t give advice - the following are the evidence based treatments. Clonidine is useful for nightmares and poor sleep. Guanfacine can do the same and can also help with day time brain fog and fatigue. If fatigue is severe dopaminergic agents are needed . See details here - while this is on LC - same principles apply psychscenehub.com/psychinsights/long-covid/
Have you also checked out the book by Dr Sarah Myhill she's a UK GP who was so in demand she wrote a book (several now) to help reach more people in need.
i was a landscape gardener, single parent with ptsd and a body builder, house keeper etc, now bed bound because of this and more, was so active but no more 😢
Sorry to hear. Were you not able to receive any treatment?
Thank you for your videos. You are the best. I am an Italian patient and I have always thought that my symptoms (depression, CFS, fibromyalgia) are related with inflammation and immunity system. I live in Rome but in Italy it's difficult to know this from doctors. Do you know some specialist in Italy that can help me? Thanks 🙏.
Thank you for your feedback. I’m sorry I don’t know if any doctors in Italy. Hoping you can discuss the condition with your doctor/s to implement treatment.
OMG, I’m not alone and I’m not going mad. I certainly want off this bus though, not enjoying the ride. I’m 55yrs old, physically fit pre Covid. 4years on and feel like 99yrs and unable to achieve a fraction of what I used to do.
Sorry to hear. Hope you can find help and intervention
I have this...it takes over everything! 😔
Sorry to hear. Yes it is a very debilitating condition.
Namaste 🙏🏼. Thank you for this video.
Pleasure 🙏🏼
A new video on cfs focusing on the clinical evaluation ruclips.net/video/kaTCExuc1Ps/видео.html
Im glad i ran across this page because most people would understood this!Even some doctor's!,my doctor always look at me like im crazy!
Yes I hope there is greater understanding of this. The literature is out there
I have found low-dose naltrexone quite effective, I assume because of the anti-inflammatory effect. Unfortunately I am still pretty impaired before noon, but that’s so much better than being impaired all the time. Downside: will keep u from getting long-term care insurance
Yes low, a low dose of naltrexone can help. Usually, because it is multi-systemic and multiple areas of the brain are involved - augmentation strategies are needed.
Why will LDN keep you from being insured?
Hi. I am also finding LDN helpful. And like you - before noon, after waking I am still debilitated. But during the day I am doing a lot better. Just wish I could understand what happens in the night to make the mornings this bad.
Where have you been all my life! I wish that you can make this video mandatory training to every Primary Care Physician and specialist who deals with these multi symptoms. Part of the problem with our healthcare is our healthcare is piecemealed out to a variety of specialty providers and none of them talk to one another. They expect someone who is sleep deprived and in a brain fog coma to adequately relay years/decades of their past with all their symptoms. It's ridiculous!
I have ME/CFS and it's impossible how this is treated in my country (Germany). I live alone and I don't get any help. It's extremely difficult to get help or just the diagnosis. No doctor I met has any idea about it...
Yes it’s like this in many places. Support groups may know more
Thank you for this information. I’ve tried everything you’ve covered here, over time, and nothing has had a lasting effect. I always check in now and then to see if there is anything new to try but so far, nothing. 20 yrs and mostly bedridden now.
Sorry to hear. In combination or individually? With CFS it's not one or two things that make a difference especially in severe cases - often combinations are needed. In the comments section and in the other video there is extensive discussion on strategies.
Very comprehensive video. Thanks for your helpful information. My daughter (age 47) is nearly bedridden with POTS, dysautonomia, CFS, Ehlers Danlos hEDS. She's been declining over several years. When Covid first began in the US she had an illness that presented like original Covid. This was before it was named. She declined very quickly and has never recovered to prior level of activity, etc. We did not test for covid until after 11mos and it was not found. She has had Ketamine infusions which were very helpful but don't last very long, less than 2 weeks. We are not wealthy people so cannot continue this treatment. Do you have any input regarding Ketamine and Spravado? What is the mechanism by which Ketamine could be helping her?
Sorry to hear. Ketamine and esketamine ( spravato) are NMDA antagonists. Excessive glutamate is one mechanism in inflammation that can result in excitotoxicity and can also worsen pain.They have antidepressant , anti pain properties. However as with CFS , a multi pronged approach is needed. There is extensive discussion on the comments and also in the other video we did on CFS. That could provide some ideas on treatment to discuss with the doctors. Wish you and your family well. Here is a bit more detail on esketamine psychscenehub.com/psychinsights/esketamine-psychopharmacology-efficacy/
I have the same no pots though for a few years how are you nownb at what she's from the uk
Thank you so much for this video I’m sure it will help so many people to understand this debilitating illness. I started suffering with it after I had the flu shot in 2012 when I went to work in a care facility. I had absolutely no problems with my energy level before that. I had been having problems with undiagnosed fibromyalgia for a long time but that was it. I was in and out of my drs office for years with no help at all. I was told to get more exercise and it should get better. I was doing housekeeping cleaning 40 rooms plus extras how much more exercise did I need. Well I crashed and that was it. I’ve been off work now for 6 years. I am in BC and I found out about the studies that were going on in the BC Womens hospital for this and asked my dr to put in a referral. It is a 2 year waiting period but I had already been suffering for years with it. She then proceeded to tell me we have a dr here that took some training there and would I like to go. WHAT THE HECK!!! Why didn’t she suggest this sooner. About three years ago is when I got to go in for the first time to see this doctor and I ended up with a definite diagnosis with CFS/ME/fibromyalgia. She started working with me with certain medication‘s which I reacted to because I have massive chemical sensitivity And then we gradually worked up to where I am at now. Through it all I have found some slight relief with occasional crashes but we have been managing. In August I got Covid and then all hell broke loose. I have been suffering with the worst fatigue since then. I called my specialists office to try and make an appointment to get in to see her just to be told that she has decided she is not going to work with this type of thing anymore. I couldn’t believe it I thought how can you just stop treating your patients without contacting them first for one final appointment. Since then I’ve been living in hell. I contacted my regular doctor and told her I can’t do this anymore I just want to give up.
Now we will talk about some of the treatment that I have been on. I have been on a low-dose naltrexone which has helped with the pain somewhat and have been on Modafinil. The modafinil itself I think was keeping the beast at bay but not completely. Once I had this massive crash the modafinil did nothing so this is when I contacted my regular doctor and I told her that my specialist is not doing this anymore and I didn’t know what to do. I had been taking 200 mg of modafinil and it was not doing anything at all to help at this time. She told me to take 400 mg and this became a nightmare. Because of my chemical sensitivity I ended up having massive side effects from it which I did not realize at the time that’s what was going on until I decided to read up on it. Today I decided I’m only going to take 200 mg and see what happens. I have got continual brain fog now since I have been taking the high dosages and I am very weak and can hardly function. I think if I had just taken the time and allowed my body to go through the crash I may have been able to get through this and not be where I’m at now. I don’t know what to do or where I’m going to go from here. I’m 61 and I just don’t want to do this anymore. I’m hoping that my body will stabilize after it adjusts from the trauma of the sudden increase of the modafinil. I feel betrayed where my specialist is concerned and I’m sure there are a few here that feel the same way. That was so unprofessional of her just to suddenly decide she’s not going to be treating us anymore. Anyway sorry for the long rant but I’m sure everyone on here can understand what I’m going through. Maybe I will talk to my doctor about doing what I wanted done years ago and go to the BC women’s and see if there’s anything that can be done. All I can say right now is that this is the worst possible time for this to happen. I need all the energy I can get and I can’t for see it happening anytime soon😢😢😢
Sounds like a bad med for you, making you weaker etc.
I too have med issues causing same like slow death... Ill be ditching all poison / meds soon..back to trying self care . Best to you 💙🙏✨
Sorry to hear. In this article, I've covered specific aspects of treatment. often the hyperarousal / agitation / sleep disturbances also need to be addressed - There are some specific aspects discussed Ps not medical advice psychscenehub.com/psychinsights/long-covid/
So sorry to hear how hard it all has been. Regarding Modafinil, here's an important point: some people do better on a much smaller dose. I get optimal effects at 50 mg. while I know others who do well on only 25 mg. - much better energy and ability to think clearly than with higher doses. I guess it's similar to the Low-dose Naltrexone (LDN) concept. Worth a try. I hope that you get relief, and soon. I can sympathize a lot...I'm 68, have had a recent worsening of my many symptoms, and feel quite abandoned by the medical profession. God help us!
Thank you so much sir for this wonderful lecture ❤️
Your lectures are amazing and always helpful for a greater understanding.
Please sir also make lectures on Forensic psychiatry, will be very helpful for us in understanding this difficult part.
Thank you for your feedback. We will definitely keep this in mind. Thanks for the suggestion. Do you have any specific topics in mind- we could focus on them. We have a series of videos by Prof Mullen that you might find useful in the mean time. Forensic Psychiatry
ruclips.net/p/PLV0KZkVDyoOF4yduzi7RrGJCZnjnerh13
@@PsychiatrySimplified Thank you for your reply sir. I would suggest a brief overview on important topics of Forensic psychiatry included in mrcpsych paper b by sir Dr. Sanil Rege.
Thank you
COVID-19 Moderna Vaccine allergic reaction triggered the return of CFS at a debilitating level. Continues to keep me home bound over 2 years, to date. Desperate for it to resolve.
Sorry to hear. Hope you can get help.
@@PsychiatrySimplified 🙏
Thank you so much for this video. Best I've seen addressing CFS/ME. I had it years ago after EBV. Have had Hashimotos for 30yrs as well. After my 1st Covid vax 4 weeks ago on the second day I went down with CFS/ME again. Am mainly bedridden a.t.m.
Thank you for your feedback. Sorry to hear. Has your thyroid function been tested and is it treated? Hope you get well soon.
Thank you for replying. I get my Thyroid results tomorrow. Will be interesting to see where they are at.
@@janbishop9726 I would be very interested to hear about any test results from this relapse period! I've had "This Damn Disease" since at least my late teens. I've been given diagnoses of (in chronological order):
Chronic EBV (1987)
Fibromyalgia (1994)
Probable MS (2004)
MS diagnosis (2020)
I have refused to get the vaccines because I have had severe reactions to vaccines at least 3 times. In fact, I think that vaccines in childhood may have played one of many important roles in either setting me up for, or causing, my illness. And a booster of the Tetanus vaccine in 1983, caused a dramatic severe reaction, resulting in weeks of illness, and a worsening of the illness in general long term.
Please share as much as you feel comfortable about your experiences, both in general, and re: the COVID jab!
How are you now Jan?