It took two years and many tests that showed up as normal, and many doctors before I was referred to Dr. Systrom. The invasion CPET test is not fun, but it gave me a diagnosis of Dysautonomia-Pre-load failure with a side order of Small Fiber Neuropathy. Going from extreme exhaustion with severe nerve pain, to living a normal life is amazing! I won't be running 5k races anything soon, but to be able to go on vacation with my family and do a lot of walking (best day was 16,000+ steps!) is priceless. On a side note, Dr. Systrom is a very unique doctor that would come out personally to get you from the waiting room! True gentleman and a class act!!
Another wonderful doctor trying to figure this out. I went 17 years without the diagnosis. I became homeless because I couldn’t work and was denied Social Security Disability benefits. Finally awarded SSI benefits starting January 2017. Hoping scientists and doctors will figure out the causes and treatments. As patients, we are a big part of gaining understanding.
I was diagnosed almost 30 years and slowly became unable to do much of anything. I was an athlete. Sports went and then the gym went and then my job went and relationships went ... and I am so so happy to hear there is attention to this. Thank you. thank you.
Watching this from the U.K. as a severe ME sufferer since 1991,itboth gives me hope but alsoreduces me to tears given medicine here is truly in the Dark Ages.As touched upon the PACE Trial an MP has described it as one of the biggest medical scandals of the 21stC But thank you so much for this.
I’m so fortunate to have come across this amazing video by this wonderful doctor!!! I now finally have a diagnosis of POTS/CFS thanks to my continuous research.
I’ve had ME/CFS for over 30yrs. When I was first sick I was investigated for MS & MG. I was prescribed Mestinon for MG. It was wonderful, I was able to return to work. After being on it for a few years, my neurologist took me off it when it turned out I didn’t have Myasthenia Gravis. My fatigue immediately got worse. It’s now been over 30yrs & I’m housebound & mostly bedbound. I’d love the chance to go back on Mestinon. Wish I could see Dr Sutton, but I live in South Australia. I’m currently on no treatment as the only specialists in ME/CFS in my area retired many years ago.
Australiano Lalaki, my dr doesn’t want to prescribe it but has referred me to a neurologist to see if he will. I’m still waiting for an appointment. She said if he ok’s me to go back on Mestinon, she will prescribe it for her other patients.
I particularly love when research comes out of the left field. This is encouraging and it's interesting to see the overlap of SFPN between ME, FM and POTS patients.
I have moderate to severe ME/Fibromyalgia! Had symptoms of fatigue and severe headaches since age 11, can function when symptoms are tolerable but tbh I think most of us are so used to feeling unwell daily that we become desensitised to some of our symptoms!! A healthy person would really struggle with even the smallest of symptoms that we get daily, the debilitating ones would tell them that’s there is something wrong with their health!! It’s a insidious and life changing condition that changed hourly , daily and can not be predicted ! Peaks and troughs , small bursts of energy or hyper vigilance then extreme fatigue and flu symptoms but to be name a few!! I pray for a treatment and recognition for all of my fellow sufferers so we can get rid of the stigma and disbelief around this illness, maybe then we can be justified and doctors will finally realise millions of people cannot me suffering so much with the same symptoms and same life changing health problems!!! This is real and makes you feel suicidal at times because of the lack of suppprt and treatment!
Thank you for taking ME/CFS seriously. After twenty-one years of seeing specialist after specialist , only to be told that I'm mentally ill or that I need to avoid stress, this presentation helps me feel validated for the first time. Trying to reconcile how drastically my life has changed from this illness-all the lost dreams, being thrust into poverty after being so independent, the social isolation-has taken my will to live many times. I, too, was athletic all my life until a virus struck. To hear that there may be a treatment gives me hope, however tentative. If I could give a million dollars towards research, I would!
I’m in Adelaide in South Australia. I’m 37 and unable to care for myself and my children. Our country is so far behind. This gives me hope that one day, we may have access to holistic care and not just looked upon as a burden. What an amazing man and Dr. Of course it’s not in our heads. Nobody would choose this😥
B P I believe you 100%. So sad that you can not enjoy your life and family. ME/CFS is analogous to having cancer.......it affects the entire family. I believe the world is on the precipice of educating governments, all practices of healthcare, and sufferers of ME/CFS. KT
I’m currently a patient at Dr. Systrom’s clinic. 34 years with ME/CFS. My insurance has not improved the invasive CPET! It’s in the appeal process now. We need approved testing for ME/CFS! You can’t sweep this under the rug anymore.
ohhollywood just took my case to the state appeals office. Going on 9 months now. I should have an answer by the end of the year - hopefully! Haven’t given up I need this test.
God bless you. I’ve been suffering for 23 years. I’m in the US and have been through hell with the medical field out here...I am literally crying while listening to this. This gives me hope because although there may never be a cure in my lifetime, I am 53, this may help others in the future...I have been bed ridden for most of this year. Thank you so much for making this information available. I am currently living in San Diego, Ca USA and I currently have Kaiser Permanente but they are dismissing me and keep sending me to psych. My psychiatrist is very upset with the doctors and has actually contacted my doctors and told them to stop sending me to her because my issues are medical...Do you have any information or know of a doctor in my area? Thank you so much. My name is Christine
Blessed Hope Dr Chia in Torrence may have some answers. This wonderful lady who writes this blog lives in SoCal and may be able to direct you to good resources craftschronicillnessandadulting.wordpress.com/2018/09/18/five-confessions-of-a-chronic-fatigue-syndrome-patient/
Blessed Hope if you can travel to the Bay Area, Dr. Kaufman or Dr. Chheda are at the Center of Complex Diseases in Mountain View, CA. Dr Montoya and Dr Bonilla are at Stanford. All specialize in ME/CFS. People post about their experiences seeing various doctors on the Phoenix Rising website forum.
Blessed Hope. I totally get you. I don't know anyone personally with ME/CFS except myself. It is hard to explain to anyone how this affects your total life, I don't even try anymore. After all, it just doesn't make sense.......it wouldn't make sense to me either, if I didn't have it, I don't think I could understand....but if you have to live with it, there is no denying it.......What keeps my spirits up is to start my day finding my gratitudes and humor....if I can't find those then I know I am in trouble, for you always have to have some hope...which is why I'm searching RUclips today. I went to Walmart for groceries about 2 months ago, having to use a mobility cart......I carried the two bags of perishables in ( left the rest in the car)and put away and had to lie down. It took me 9 days to recover to where I could do anything useful at all. That wouldn't make sense to anyone unless they had post exertion malaise/post exertion fatigue. I just recovered ( 5 weeks) from a fall which gave me 2 concussions ( thank goodness, because it could have been worse, just contusions and huge bruises) Why did I fall? I simply bent down to plug my phone in without thinking.....like a normal person would. The lightheaded, weakness, postural intolerances and vertigo...requires you to be extra cautious....... And now I have the real fear of falling again, because I could not get back up, by myself. Now it wasn't funny that night, but now I laugh about it because I tried so hard to catch myself, it was like a ball bouncing around in one of those old pinball machines. I wish you much luck in your journey with CFS. I live alone and my cat was so upset. She tried to comfort me and was real anxious (after all there is No ONE else that can open her cat food cans, lol) While I waited for my daughter to come, my cat finally just got up on my chest and laid down on me. She is a lot of company to me. Bless her furry heart.
K Size Hi🙋🏻♀️Thanks for your reply and be careful dear. I have fallen as well and had some very severe breaks due to osteoporosis from the effects of ME. I am being so much more careful now. I found a new doctor in my area and though she is limited on what she can do for me she has been such a blessing. Just knowing she believes in me and is following all the current research makes all the difference in the world. The day I met her I cried and cried. I was so relieved I finally found someone who understands and “gets it”.
Interesting. As an ME patient of 30 years but only diagnosed for 7, it has been and continues to be a long old journey. But it's fascinating to see that at long last the dots are starting to be joined up. Definitely interested to hear more about the connection between ANS, inflammation and auto immune. Thank you for everything you are doing. I only wish the wonderful work you are doing could find it's way across the pond to us here in the UK. Long for the day when the NHS starts to see and treat this as the multi-systemic condition it is.
Excellent information and God Bless these docs that finally realize this is a very serious life robbing illness. Please make this information accessible. Thank you!
Thank you for the work you are doing. I was diagnosed with ME/CFS over seven years ago and four years ago also diagnosed with a mild case of dermatomyositis. My life is changed and I have adapted but am always looking for new answers. (I have a warm place in my heart for MGH as my great aunt was Ruth Sleeper)
This is an exciting development, thank you to all concerned. My best hope of treatment is to find an already-approved drug , (been ill around 40years so time running out) so it's encouraging to know about this one. It's very helpful to have this evidence to present to my GP, thanks again.
I've always been told they're the same thing, but I prefer to say ME since people don't take 'Chronic fatigue syndrome' seriously, like.. "Oh, so you're just tired" 🙄
This is eye opening. Ive been on ssdi since 2012 n continue to get worse with age. Horrible leg fatigue n pain. Dx with exercise intolerence yrs ago but perfect heart cath in 2016. Dominant low blood pressure n heart rate. Do not do well with meds. I have given up n as it is financially impossible to seek care.
Pamela Cossey Dear Pamela Cossey, I am very sad to hear, feel, and truly understand your position. It is blessed, highly intelligent, unrelenting people like Dr. Strysom and Mr. Llewelyn who are going to change our world.
Always great to know doctors are doing research , most grateful . This doctor seems to be focusing on exercise intolerance which for me is a major symptom along with muscle weakness and extreme fatigue ( partially bed bound ). I’m curious about all the other symptoms ? In particular flu like symptoms . Sometimes I’m exhausted , weak and can’t keep awake and sometimes I’m like this and sick as if I have a terrible virus . When I’m sick it’s exactly like having a nasty flu like virus .
Some patients with severe me/cfs also develop horrible drug intolerance syndrome.. will there ever be any hope for those people? My husband cannot even tolerate a child's does of any medication without having overdose symptoms that send us to the ER
gail yonce I understand. I'm less severe in that area but have similar issues. I had to switch most home cleaning chemicals to natural. About 6 weeks into mecfs I was hospitalized for anaphylaxis caused by an antibiotic Avelox. Research this and the class of medications. I don't believe anyone should take them. I wish Good health to both of you!
Search for MCAS Mast Cell Activation Syndrome and see if the symptoms fit. It’s often comorbid with ME cfs. Many with ME become intolerant to food, vitamins and drugs.
This is so heartening and so wonderful! Thank you for making the video. My only suggestion is to remove the dry cleaning behind Llewllen's head! But seriously, Dr. Systrom is my hero.
This video matches my long term understanding of MECFS exactly. Preload failure is also identified by head up tilt echocardiography. The normal or even very elevated ejection fraction deceives many ‘standard’ cardiologists
John White Thank you for stating this VERY important fact. I can NOT make it upstairs from the basement (laundry room), without developing severe dyspnea , tachycardia, orthostatic presentation, acute pain in my lower extremities, and headache. My EF was 55 and CST wnl. I was like.......WHAT!!!??? Incredibly dis-validating. I was grateful to have a clean cardiac bill-of-health, but utterly mystified and frustrated by my clinical presentations. I knew I wasn’t making this up. KT
Is it possible please for you to allow subtitles in yours videos ? ( as English is not my maternal language, and as a severe PwME, it's pretty impossible for me to understand without English subtitles ). Thanks in advance ! 🙏
I appreciate it too - I have bad audio processing issues and without subtitles - I can't watch at all (and I am an English speaker) - thank you for your work!
It's been very hard in my experience (with my own cluster of symptoms & my ME/CFS diagnosis) to tell what is overlap from something else and what is actually part of ME/CFS. I will go into forums and ask questions like "Does anybody else have _______ (insert symptom) happening to them?" but then become so cognif.. speech word blank in head must stop writing
Very interesting presentation - I am glad at least one physician at Brigham and Womens hospital takes CFS seriously. The question is does Harvard medical school teach it’s doctors that CFS is real and that CFS patients are very disabled? Will the results of this physicians research have any effect on the beliefs of and practice of medicine by Harvard trained MDs? My guess is the answer to both questions is no. There is a fundamental flaw at the center of the culture of medicine that causes conditions like CFS to be largely ignored and delegitimized by most MDs - until that culture changes most PWC’s will not receive proper medical care. Still I am glad that at least the research community is slowly figuring things out. I hope it doesn’t take 30 years before the research results change the practice of medicine.
most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the allowed radiation is less.
This is fascinating! Thank you! (How did I miss it earlier?) It might explain why compression sportswear is helping me to maintain better stamina whilst on my feet! I don’t wear it all the time, but when I know I need to walk more than my usual average it helps. Also I find I don’t stand still well. I prefer to sit down or if I must stay in one place I move from one foot to the other - perhaps subconsciously trying to help venous return??
....true for so many of us....we are trying to stay alive, and KNOW that taking this test would kill us....BLESS YOUR HEARTS - - - and courage for all severe ME/CFS fellow survivors!
gail yonce I believe you 100%. During my “rule-out” testing for my own edification, and SSDI process, I used every fiber in my body to physically crank it on my stress test. It was/is so important for me to do my best, so SSDI would know I’m trying my best, not lying about, exhaggerating, or faking my symptomotology. I was bedridden for many, many, days after that diagnostic test. It hurt to breathe, think, communicate. Dark days they were. Finding other’s experiences on RUclips has been ridiculously exciting. We are not alone. KT
My cfs starts after taking a new antidepressant drug (brintellix). The next day i could not stand up. Atrocious pains. Total mental confusion.I'm sick from 9 months. I m from italy.
My son's experience is typical and described well here. What is not ever said is what happens when misdiagnosed and misunderstanding implodes on a mother with a child or a young person, with what they term as Medically Unexplained Symptoms in the UK. For all other accusations there is support when you are accused of fabricating or Inducing Illness (FII) there is no support given and you cannot imagine what devastation it causes. My son's celiac disease went noticed though, due to blinkered vision of doctors who were told that CBT and GET was all they needed. Celiac disease should have been picked up in the first blood test. After two years of a sharp decline and the emphasis was put on my parenting, we found out that he was celiac has POTS and OI along with hypermobile joints. The saddest thing of all Dr Ramsay back in 1986 described this condition exactly how David Systrom explained. There are not enough words in my vocabulary to express how I feel when I watch my son's condition unfold with dedicated teams that dig down to find the hidden truth. You are amazing, and you are supporting those mothers in the UK more than you will ever know. In the UK there are more than 25,000 children who suffer, most if not all those parents will be at some point told they are FII. They will stand alone with no support. Some will stand dumbfounded while their children are forced from their homes. The mothers are then gagged and bound by the courts and doctors, psychiatrists and researchers protected by our GMC. What about their children, well you can imagine. Some left tube fed, given no medical care because the medical staff are not trained to help or to understand. So thank you David and thank you team because for 101 reasons you are all amazing, the work you do is so so important and seeing you all work together gives me and a lot of mothers like me hope.
Tina what a sad tale but not untypical as you know in the U.K. I wish your son better days.Oh for adoctor like this in the U.K.!I write as a severe PWME since 1991 Caring thoughts xx
Marshmallow hugs Maureen, 1991 is a long time. One day our good Doctors will be allowed to help us instead of being taken down, that day is dawning with the help of those like David M. Systrom
Tina Rodwell I want to seriously acknowledge your pain and suffering Ms.Tina Roswell. Nothing worse than a parent being forced into helplessness and not being validated while doing everything to protect, obtain treatment, love, your suffering child. My heart goes out to you and your child. KT
Could muscle cramps/spasms be a by product of not getting enough oxygen to the muscles? All my electrolyte levels are normal. And is there anyone in the Clearwater/St Pete/Tampa area of Florida who treats this? I've had cardiac studies up the wazoo. Thanks
You need a patient? Our daughter is a severe ME patient in Ohio she is 24 1/2. She has been unwell for 14 yrs. Please can she come there to get tested?
Annie Balsbaugh Prayers! Please join the MEAction Ohio facebook page. We are trying to gather influencers to have a greater impact here in Ohio. m.facebook.com/groups/160832157934747
My 13 yo son and I have pots. Often So hard to breathe.. I gave my dr. Your study and he is trying to get me mestinon. But it's not so easy as it's a drug that doesn't correlate with Insurance companies for pots. I do hope I get to try it out and that it helps.
There is an OTC herbal supplement with the same action as Mestinon. It's Huperzine A. It's been very helpful for me in the 50-100 mcg range though the standard dose is 400 mcg.
@ChooseLife I have always wondered about mitochondrial dysfunction. I originally suffered with gynecological diseases from a young age then developed severe M.E I think there could be a link to why alot of women develop M.E while having diseases like Endometriosis and Adenomyosis.Some studies point that Endometriosis may be associated with mitochondrial dysfunction in cumulus cells Would Mestinon be ok for someone with these illness's above?Thanks
@@NkemNdefo Thank you for sharing about the Huperzine A. Can you share more specifically how it helped you? Thanks in advance...am nearly bedbound...I'm not fatigued, it's just that I start to get sensory overload just from getting up and walking to the bathroom, etc.
@@__OL__ I now take 50 mcg every other day. It gives me more energy and stamina. While it doesn't decreases my POTS heart rate spikes, I tolerate them with less symptoms. I have to be careful not to overdo activity because I will still have PEM. Best of luck!
Does anybody have rapid onset edema from the smallest effort in any tissue around active set of joints or connective tissue? I have no medical feedback as to what is happening or what tissues it's happening in to date. But these are to the degree of severely debilitating. I have never heard this discussed. Here's an example of my experience. Minimal use of hands results in nearly immediate disfiguring level of swelling and puffiness, bright red and light blotchy skin that is hot to the touch and puts off radiant heat that can be felt by others. Also visible are dark blue raised and puffy veins all over the back of my hand that look like varicose veins? They ache deeply and are very painful to the touch. And when I accidentally touched or bumped it appears that something is bursting under the skin causing small to large raised what looks like blood blisters . The degree of pain is severe enough to make me cry. Using compression gloves while using hands at all prevents this from happening. If they are not worn during an activity and the symptoms mentioned above manifest, putting the gloves on reduces the pain level tremendously and shortens the time of recovery. Before I learned about that I would lay with my hands and feet if they were what was affected hanging off of the edges of an air mattress on the floor as it was excruciating if they were accidentally touched or even resting on a mattress. And there was a hyper protectiveness people walking to close in proximity 2 the location of my hands and feet. Here's a quick list Quick list of body areas I'm able 2 to prevent this phenomenon from happening with accompanied with a named activity specific to that location on the body. Feet, lower legs, ankles: Wearing compressing stockings prevent extreme swelling in my feet and lower legs. A compression styled Ace brand knee stabilizer prevents severe swelling of a lymph node located on the back of the knee and at the very top of the calf muscle area. The right knee is the only me affected by this symptom. The lymph node has been observed on Imaging as being enlarged and again heat can be felt radiating from the area and it is severely painful to the touch. The foot ankle and lower leg area symptoms are brought on by small bits of walking in my tiny apartment and will cause an immediate visible swelling that is so severe my ankles disappear under folds of swollen skin that actually can touch the floor beside my foot. , tissues around elbows are affected by bending them a few times, or maintaining a bent formation at the elbow in order to, say, hold a phone or a small tablet. I have not found a compression item for use on this area of the body so I must prevent this from happening by supporting my arm with the other arm when possible. More often than not it is impossible to Stave off this symptom. Shoulders are affected., wearing a splint for about 5 days post activity Provide support and more rapid healing. Holding a hairbrush in my hand and attempting to keep my wrist from flexing against the reverse pressure from the actual pushing on the hair with the brush that is common with simply brushing your hair will consistently and without fail bring on this entire set of symptoms. The skin on my arms is leather like and a nurse attempting to put in an IV described it as hide instead of skin. I experience cracking and then bleeding and cellulitis from staph infection from normal amount of staph found on everybody's skin in a healthy skin environment. I get tendonitis in the connective tissue around any of the before mentioned joints from the amount of use I have described. The swelling can be so bad it cuts off circulation to the degree I feel total numbness that can last for 24 to 48 hours before swelling recedes enough to allow blood flow to resume. That's just a small example of a very painful and extremely debilitating body-wide phenomenon that I have been living with for at least 12 years at this point in my illness. Extremely cognitively fatigued. Falling asleep several times attempting to compose this. exaggerated startle effect has kicked in and I have no energy at all to proofread. I hope somebody can make sense of this attempted composition because I'm exhausted to the point of tears from the effort to dictate this.
Maschelle Mashburn It seems like an autoimmune and/or connective tissue issue, which in fact is common in MECFS patients. Myalgic Encephalomyelitis Global is a fb group that has information and support
Maschelle Mashburn Maschelle Mashburn thank you for your great efforts and I hope you find answers, information, and health. Though I do not experience all or most of the things you described, especially not to the extent...after I read the part about the hair brush especially, I must ask... 1: How fast did the symptoms come on: for example days, months, years? 2: And did they all come at once or maybe start off with one episode of symptoms and then add up? 3: And please most importantly of you only find strength to answer one question , and whenever you feeel you are able please let me know, especially if the symptoms did not develop rapidly **did the symptoms start with way less severity than you described and slowly progress to those described?
Borrelia B. -- lyme-- is often seen with small fiber neuropathy, POTS, dysautomia, fatigue, light and sound sensitivity. And it is immunosuppressive, allowing reactivation of EBV. Perhaps a root cause.
I have been diagnosed with IBM but have so many symptoms of CFS it makes me wonder. Have been to Magnet clinic where PCP says she has no time for rare diseases, be your own advocate. Previous pcp's said is just aging, need fishoil, exercise more, lose weight, think positive, take more vitamins. Since diagnosis with this skeletal muscle wasting disease have been told hypoxia at night with elevated heart rate is weird but not worrisome by 2 pulmonologists and only sleep neuro validated muscles of respiration are going and ordered bipap. None of the specialties speak to each other, none look at lab work they didn't order. Heck, the last 2 times saw neuo (5th) he only shook my hand, no exam... so how can he assess the increase in weakness??? 39 yrs of working as RN and the MAGNET clinic will likely kill me.
I'm a patient of Dr. Systrom's and my experience with him and his team has been incredible. I made my appointment with him the week this video was published, and the appointment was scheduled 1 year out. I had been undiagnosed for many years, and just based on talking to him during my initial appointment he was confident that issues were SFN, preload failure, and oxygen extraction. - He was exactly on point. I had the iCPET (it was less scary than it seems) done 2.5 weeks ago and immediately started on Mestinon. They said it may take a few months for me to see some improvements. If you're interested to see what the iCPET was like, I wrote about my experience here (with photos) - www.mentalolympian.com/a-new-chronic-fatigue-syndrome-treatment-available-after-diagnostic-icpet/ I'm really looking forward to seeing some improvements soon! If anything, I am just happy to have a diagnosis and doctor who believes me. I now have concrete test results showing real functional issues. I am hoping everything goes smoothly and they are able to help more patients who have been undiagnosed with me/cfs!
Sarah Kozak Thank you for sharing your story with us! I would be interested to hear any updates you have on whether you feel the treatment that has been prescribed has helped in any way? (If, of course you don’t mind sharing that information..🙂) Unfortunately I live in the UK, so don’t have access to this amazing doctor, but I truly hope and pray that one day his thoughts and ways of practising spread and become more mainstream, so we can all have the opportunity to have real exploratory tests done. Obviously it would be beyond amazing if eventually there would be some kind of medical way to at least control the symptoms of CFS/ME, but I feel that even if the only positive at the moment, that comes from actually being correctly tested is a validation that there IS something physically wrong, it would be enormously helpful and would truly give sufferers a sense of hope that maybe one day we may actually be able to live a relatively ‘normal’ life. 🤞🙂
Multidisciplinary dialogue doesn't happen unless maybe you go to a big teaching institution. So very frustrating being a patient. I was diagnosed with me/cfs and fibromyalgia at Mayo in Florida and then dumped back into my area with nobody knowing how to treat me.
95% of Patients diagnosed with ME/CFS have undiagnosed Ehlers Danlos Syndrome & some have also crossovers multiple types the other 5% have other connective tissue disorders like Marfan's etc. this is what Dr. Rodney Grahame finds from the Hypermobility Unit in London UK... I have myself seen EDS3 with Vascular EDS (VEDS) or other combinations involved...I have ME/CFS Fibro EDS 3 but no Genetic testing has been done on me thus far, who wants my blood samples?
Dear, now the cause of Chronic Fatigue Syndrome is found: radiation of microwave-oven(magnetron). To stop you have to eliminate the oven out of the house. The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor. The distance between an oven and a person is very important.After a 3 months without microwaves health becomes better. The victims are more sensible and also the distance between victim and oven is important.After long time obesity is possible. (Also possible: nightmares, change of character)Most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the less radiation is allowed by law. I had much very positive reactions, some people recovered entirely. Sometimes not because it was being tired through other causes or diseases,not the real cfs.
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It took two years and many tests that showed up as normal, and many doctors before I was referred to Dr. Systrom. The invasion CPET test is not fun, but it gave me a diagnosis of Dysautonomia-Pre-load failure with a side order of Small Fiber Neuropathy. Going from extreme exhaustion with severe nerve pain, to living a normal life is amazing! I won't be running 5k races anything soon, but to be able to go on vacation with my family and do a lot of walking (best day was 16,000+ steps!) is priceless. On a side note, Dr. Systrom is a very unique doctor that would come out personally to get you from the waiting room! True gentleman and a class act!!
Congratulations, what is your treatment?
Be care not to relapse again. Been there few times. 16000 steps in the summer, bedridden in the winter.
I am astonished. This is the most informative interview I have heard.
It's validating to hear a real doctor angry at his colleagues for our mistreatment. Thank you for this informative interview.
Another wonderful doctor trying to figure this out. I went 17 years without the diagnosis. I became homeless because I couldn’t work and was denied Social Security Disability benefits. Finally awarded SSI benefits starting January 2017. Hoping scientists and doctors will figure out the causes and treatments. As patients, we are a big part of gaining understanding.
I was diagnosed almost 30 years and slowly became unable to do much of anything. I was an athlete. Sports went and then the gym went and then my job went and relationships went ... and I am so so happy to hear there is attention to this. Thank you. thank you.
Watching this from the U.K. as a severe ME sufferer since 1991,itboth gives me hope but alsoreduces me to tears given medicine here is truly in the Dark Ages.As touched upon the PACE Trial an MP has described it as one of the biggest medical scandals of the 21stC
But thank you so much for this.
Maureen Bivard which mp is it who has discrdited it
I’m so fortunate to have come across this amazing video by this wonderful doctor!!! I now finally have a diagnosis of POTS/CFS thanks to my continuous research.
I’ve had ME/CFS for over 30yrs. When I was first sick I was investigated for MS & MG. I was prescribed Mestinon for MG. It was wonderful, I was able to return to work.
After being on it for a few years, my neurologist took me off it when it turned out I didn’t have Myasthenia Gravis.
My fatigue immediately got worse. It’s now been over 30yrs & I’m housebound & mostly bedbound.
I’d love the chance to go back on Mestinon.
Wish I could see Dr Sutton, but I live in South Australia. I’m currently on no treatment as the only specialists in ME/CFS in my area retired many years ago.
Hi Wendy, I am in SA too , are you back on Mestinon?Won't your GP prescribe it?
Australiano Lalaki, my dr doesn’t want to prescribe it but has referred me to a neurologist to see if he will. I’m still waiting for an appointment. She said if he ok’s me to go back on Mestinon, she will prescribe it for her other patients.
Dear Wendy Zozuk,
Thank you for sharing your history.
Through our (those of us with ME/CFS), we can educate the masses, and give HOPE.
KT
I particularly love when research comes out of the left field. This is encouraging and it's interesting to see the overlap of SFPN between ME, FM and POTS patients.
I have moderate to severe ME/Fibromyalgia! Had symptoms of fatigue and severe headaches since age 11, can function when symptoms are tolerable but tbh I think most of us are so used to feeling unwell daily that we become desensitised to some of our symptoms!! A healthy person would really struggle with even the smallest of symptoms that we get daily, the debilitating ones would tell them that’s there is something wrong with their health!! It’s a insidious and life changing condition that changed hourly , daily and can not be predicted ! Peaks and troughs , small bursts of energy or hyper vigilance then extreme fatigue and flu symptoms but to be name a few!! I pray for a treatment and recognition for all of my fellow sufferers so we can get rid of the stigma and disbelief around this illness, maybe then we can be justified and doctors will finally realise millions of people cannot me suffering so much with the same symptoms and same life changing health problems!!! This is real and makes you feel suicidal at times because of the lack of suppprt and treatment!
Thank you for taking ME/CFS seriously. After twenty-one years of seeing specialist after specialist , only to be told that I'm mentally ill or that I need to avoid stress, this presentation helps me feel validated for the first time. Trying to reconcile how drastically my life has changed from this illness-all the lost dreams, being thrust into poverty after being so independent, the social isolation-has taken my will to live many times. I, too, was athletic all my life until a virus struck. To hear that there may be a treatment gives me hope, however tentative. If I could give a million dollars towards research, I would!
I’m in Adelaide in South Australia. I’m 37 and unable to care for myself and my children. Our country is so far behind. This gives me hope that one day, we may have access to holistic care and not just looked upon as a burden. What an amazing man and Dr. Of course it’s not in our heads. Nobody would choose this😥
B P
I believe you 100%.
So sad that you can not enjoy your life and family.
ME/CFS is analogous to having cancer.......it affects the entire family.
I believe the world is on the precipice of educating governments, all practices of healthcare, and sufferers of ME/CFS.
KT
I’m currently a patient at Dr. Systrom’s clinic. 34 years with ME/CFS. My insurance has not improved the invasive CPET! It’s in the appeal process now. We need approved testing for ME/CFS! You can’t sweep this under the rug anymore.
DJ Lombardi 😰
can I contact you with a few questions?
Sure!
ohhollywood just took my case to the state appeals office. Going on 9 months now. I should have an answer by the end of the year - hopefully! Haven’t given up I need this test.
DJ Lombardi Is the test a requirement for treatment?
God bless you. I’ve been suffering for 23 years. I’m in the US and have been through hell with the medical field out here...I am literally crying while listening to this. This gives me hope because although there may never be a cure in my lifetime, I am 53, this may help others in the future...I have been bed ridden for most of this year. Thank you so much for making this information available. I am currently living in San Diego, Ca USA and I currently have Kaiser Permanente but they are dismissing me and keep sending me to psych. My psychiatrist is very upset with the doctors and has actually contacted my doctors and told them to stop sending me to her because my issues are medical...Do you have any information or know of a doctor in my area? Thank you so much. My name is Christine
Blessed Hope Dr Chia in Torrence may have some answers. This wonderful lady who writes this blog lives in SoCal and may be able to direct you to good resources craftschronicillnessandadulting.wordpress.com/2018/09/18/five-confessions-of-a-chronic-fatigue-syndrome-patient/
ohhollywood thank you so much
Blessed Hope if you can travel to the Bay Area, Dr. Kaufman or Dr. Chheda are at the Center of Complex Diseases in Mountain View, CA.
Dr Montoya and Dr Bonilla are at Stanford. All specialize in ME/CFS.
People post about their experiences seeing various doctors on the Phoenix Rising website forum.
Blessed Hope. I totally get you. I don't know anyone personally with ME/CFS except myself. It is hard to explain to anyone how this affects your total life, I don't even try anymore. After all, it just doesn't make sense.......it wouldn't make sense to me either, if I didn't have it, I don't think I could understand....but if you have to live with it, there is no denying it.......What keeps my spirits up is to start my day finding my gratitudes and humor....if I can't find those then I know I am in trouble, for you always have to have some hope...which is why I'm searching RUclips today. I went to Walmart for groceries about 2 months ago, having to use a mobility cart......I carried the two bags of perishables in ( left the rest in the car)and put away and had to lie down. It took me 9 days to recover to where I could do anything useful at all. That wouldn't make sense to anyone unless they had post exertion malaise/post exertion fatigue. I just recovered ( 5 weeks) from a fall which gave me 2 concussions ( thank goodness, because it could have been worse, just contusions and huge bruises) Why did I fall? I simply bent down to plug my phone in without thinking.....like a normal person would. The lightheaded, weakness, postural intolerances and vertigo...requires you to be extra cautious....... And now I have the real fear of falling again, because I could not get back up, by myself. Now it wasn't funny that night, but now I laugh about it because I tried so hard to catch myself, it was like a ball bouncing around in one of those old pinball machines. I wish you much luck in your journey with CFS. I live alone and my cat was so upset. She tried to comfort me and was real anxious (after all there is No ONE else that can open her cat food cans, lol) While I waited for my daughter to come, my cat finally just got up on my chest and laid down on me. She is a lot of company to me. Bless her furry heart.
K Size Hi🙋🏻♀️Thanks for your reply and be careful dear. I have fallen as well and had some very severe breaks due to osteoporosis from the effects of ME. I am being so much more careful now. I found a new doctor in my area and though she is limited on what she can do for me she has been such a blessing. Just knowing she believes in me and is following all the current research makes all the difference in the world. The day I met her I cried and cried. I was so relieved I finally found someone who understands and “gets it”.
Interesting. As an ME patient of 30 years but only diagnosed for 7, it has been and continues to be a long old journey. But it's fascinating to see that at long last the dots are starting to be joined up.
Definitely interested to hear more about the connection between ANS, inflammation and auto immune.
Thank you for everything you are doing. I only wish the wonderful work you are doing could find it's way across the pond to us here in the UK. Long for the day when the NHS starts to see and treat this as the multi-systemic condition it is.
This guy is incredible... just got diagnosed with CFS last week. If I don't make improvements soon I'm certainly going to see him.
How great to feel your symptoms have been regconised
Excellent information and God Bless these docs that finally realize this is a very serious life robbing illness. Please make this information accessible. Thank you!
Compartmentalization is the bane of the Medical Industrial Complex.
Mestinon helped me a lot with the POTS and gastroparesis that my hypermobile type Ehlers Danlos syndrome causes me.
Thank you for the work you are doing. I was diagnosed with ME/CFS over seven years ago and four years ago also diagnosed with a mild case of dermatomyositis. My life is changed and I have adapted but am always looking for new answers. (I have a warm place in my heart for MGH as my great aunt was Ruth Sleeper)
This was a year ago!! Any progress on this 🙏🏼
This is an exciting development, thank you to all concerned. My best hope of treatment is to find an already-approved drug , (been ill around 40years so time running out) so it's encouraging to know about this one. It's very helpful to have this evidence to present to my GP, thanks again.
Advancements are pretty slow,3yrs later and where still waiting...
This needs to be fed into the NICE Guideline review.
8:10 Interesting experiment and results in terms of the pulmonary artery catheter test and oxygen uptake.
Thank G-d for social media and people with ME. That is how I learned that my CFS (which I was told was not a serious disease) was ME!
I've always been told they're the same thing, but I prefer to say ME since people don't take 'Chronic fatigue syndrome' seriously, like.. "Oh, so you're just tired" 🙄
This is eye opening. Ive been on ssdi since 2012 n continue to get worse with age. Horrible leg fatigue n pain. Dx with exercise intolerence yrs ago but perfect heart cath in 2016. Dominant low blood pressure n heart rate. Do not do well with meds. I have given up n as it is financially impossible to seek care.
Pamela Cossey
Dear Pamela Cossey,
I am very sad to hear, feel, and truly understand your position.
It is blessed, highly intelligent, unrelenting people like Dr. Strysom and Mr. Llewelyn who are going to change our world.
With people like Dr Systrom on the case, surely there will be an answer found soon...
Fantastic new information! How to convince a GP to prescribe Mestinon???
Always great to know doctors are doing research , most grateful . This doctor seems to be focusing on exercise intolerance which for me is a major symptom along with muscle weakness and extreme fatigue ( partially bed bound ). I’m curious about all the other symptoms ? In particular flu like symptoms . Sometimes I’m exhausted , weak and can’t keep awake and sometimes I’m like this and sick as if I have a terrible virus . When I’m sick it’s exactly like having a nasty flu like virus .
Some patients with severe me/cfs also develop horrible drug intolerance syndrome.. will there ever be any hope for those people? My husband cannot even tolerate a child's does of any medication without having overdose symptoms that send us to the ER
gail yonce I understand. I'm less severe in that area but have similar issues. I had to switch most home cleaning chemicals to natural. About 6 weeks into mecfs I was hospitalized for anaphylaxis caused by an antibiotic Avelox. Research this and the class of medications. I don't believe anyone should take them. I wish Good health to both of you!
You can try mold avoidance and chemical avoidance, including low-tox house, if possible. Many things do get better with this, for some with CFS.
Search for MCAS Mast Cell Activation Syndrome and see if the symptoms fit. It’s often comorbid with ME cfs. Many with ME become intolerant to food, vitamins and drugs.
When do patients on pyridostigmine start to see any improvements?
What amazing work they're doing. More please. Much much more like this.
This is so heartening and so wonderful! Thank you for making the video. My only suggestion is to remove the dry cleaning behind Llewllen's head! But seriously, Dr. Systrom is my hero.
This video matches my long term understanding of MECFS exactly. Preload failure is also identified by head up tilt echocardiography. The normal or even very elevated ejection fraction deceives many ‘standard’ cardiologists
John White
Thank you for stating this VERY important fact.
I can NOT make it upstairs from the basement (laundry room), without developing severe dyspnea , tachycardia, orthostatic presentation, acute pain in my lower extremities, and headache.
My EF was 55 and CST wnl. I was like.......WHAT!!!???
Incredibly dis-validating. I was grateful to have a clean cardiac bill-of-health, but utterly mystified and frustrated by my clinical presentations.
I knew I wasn’t making this up.
KT
Thank you for publishing this video! It gives us hope
Good to hear a whole other angle on this vile disease
Thank you, excellent presentation and interesting work
WONDERFUL! Thank you.
Is there a transcript, please? I find it really hard to sit through these talking head vids. Thanks!
Look at Glucagon Stimulation Test Hypopituitarism you will see abnormalities in ME/CFS
Thank you so much. I'm crying...
Great, informational, validating video interview. Thanks for this.
Fascinating interview. A trial that sounds hopeful too.
Thank you!
Is it possible please for you to allow subtitles in yours videos ? ( as English is not my maternal language, and as a severe PwME, it's pretty impossible for me to understand without English subtitles ). Thanks in advance ! 🙏
Thank you for your very good suggestion. We'll look into it. We're sorry it's hard for you to follow the episodes.
White House Chronicle Wonderfull ! Subtitles now appears ! Thank you very much 😊😊😊!
We're so glad that we could be of help. We want our videos to reach a world audience. Could you tell us where you live?
White House Chronicle France😊
I appreciate it too - I have bad audio processing issues and without subtitles - I can't watch at all (and I am an English speaker) - thank you for your work!
@10:43 interesting to hear that ME/CFS patients venous oxygen levels is abnormally high
anyone know the doses given by Dr Systrom ? My Dr is interested.
It's been very hard in my experience (with my own cluster of symptoms & my ME/CFS diagnosis) to tell what is overlap from something else and what is actually part of ME/CFS. I will go into forums and ask questions like "Does anybody else have _______ (insert symptom) happening to them?" but then become so cognif.. speech word blank in head must stop writing
Okay, so I'm not the only one with weird overlapping symptoms. I was actually wondering that because I was so confused as to what was happening.
Thank you, My heart tests are ok, but get "shortness of breath" with activity etc.. I have ME/CFS
Very interested in this . Reflects a lot of my presentation.
Woow! Thank you so much for this video
Very interesting presentation - I am glad at least one physician at Brigham and Womens hospital takes CFS seriously. The question is does Harvard medical school teach it’s doctors that CFS is real and that CFS patients are very disabled? Will the results of this physicians research have any effect on the beliefs of and practice of medicine by Harvard trained MDs? My guess is the answer to both questions is no. There is a fundamental flaw at the center of the culture of medicine that causes conditions like CFS to be largely ignored and delegitimized by most MDs - until that culture changes most PWC’s will not receive proper medical care. Still I am glad that at least the research community is slowly figuring things out. I hope it doesn’t take 30 years before the research results change the practice of medicine.
Thank you.
I’m hoping to see him if at all possible .. wandering from dr to dr always end up at the same end ...
Thank you Dr. We have a little bit more then a little bit of anger.
most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the allowed radiation is less.
Thanks for this. Great video. Very informative. :)
We can't find any help . Our daughter has been treated terrible by many drs. Can someone please tell me how to get a appointment ?
Annie Balsbaugh his office number is here physiciandirectory.brighamandwomens.org/details/800/david-systrom-pulmonary_and_critical_care-boston
This is fascinating! Thank you! (How did I miss it earlier?)
It might explain why compression sportswear is helping me to maintain better stamina whilst on my feet! I don’t wear it all the time, but when I know I need to walk more than my usual average it helps. Also I find I don’t stand still well. I prefer to sit down or if I must stay in one place I move from one foot to the other - perhaps subconsciously trying to help venous return??
What website is he talking about at the end?
Any stress test would kill my husband- his me/cfs is so bad if he walks to the bathroom he crashes for months..
....true for so many of us....we are trying to stay alive, and KNOW that taking this test would kill us....BLESS YOUR HEARTS - - - and courage for all severe ME/CFS fellow survivors!
gail yonce
I believe you 100%.
During my “rule-out” testing for my own edification, and SSDI process, I used every fiber in my body to physically crank it on my stress test. It was/is so important for me to do my best, so SSDI would know I’m trying my best, not lying about, exhaggerating, or faking my symptomotology.
I was bedridden for many, many, days after that diagnostic test. It hurt to breathe, think, communicate. Dark days they were.
Finding other’s experiences on RUclips has been ridiculously exciting.
We are not alone.
KT
I don’t see the link for the published paper?
Nathalie, I believe this is the paper you are looking for: www.ncbi.nlm.nih.gov/pmc/articles/PMC4860548/
- Hannah
Our daughter is bedbound housebound 24 hrs. A day
Just curious is fertility treatments is ever known to trigger cfs? thank you.
My cfs starts after taking a new antidepressant drug (brintellix). The next day i could not stand up. Atrocious pains. Total mental confusion.I'm sick from 9 months. I m from italy.
My son's experience is typical and described well here.
What is not ever said is what happens when misdiagnosed and misunderstanding implodes on a mother with a child or a young person, with what they term as Medically Unexplained Symptoms in the UK. For all other accusations there is support when you are accused of fabricating or Inducing Illness (FII) there is no support given and you cannot imagine what devastation it causes.
My son's celiac disease went noticed though, due to blinkered vision of doctors who were told that CBT and GET was all they needed. Celiac disease should have been picked up in the first blood test.
After two years of a sharp decline and the emphasis was put on my parenting, we found out that he was celiac has POTS and OI along with hypermobile joints. The saddest thing of all Dr Ramsay back in 1986 described this condition exactly how David Systrom explained.
There are not enough words in my vocabulary to express how I feel when I watch my son's condition unfold with dedicated teams that dig down to find the hidden truth. You are amazing, and you are supporting those mothers in the UK more than you will ever know.
In the UK there are more than 25,000 children who suffer, most if not all those parents will be at some point told they are FII. They will stand alone with no support. Some will stand dumbfounded while their children are forced from their homes. The mothers are then gagged and bound by the courts and doctors, psychiatrists and researchers protected by our GMC. What about their children, well you can imagine. Some left tube fed, given no medical care because the medical staff are not trained to help or to understand.
So thank you David and thank you team because for 101 reasons you are all amazing, the work you do is so so important and seeing you all work together gives me and a lot of mothers like me hope.
Tina what a sad tale but not untypical as you know in the U.K.
I wish your son better days.Oh for adoctor like this in the U.K.!I write as a severe PWME since 1991 Caring thoughts xx
Marshmallow hugs Maureen, 1991 is a long time. One day our good Doctors will be allowed to help us instead of being taken down, that day is dawning with the help of those like David M. Systrom
Tina Rodwell
I want to seriously acknowledge your pain and suffering Ms.Tina Roswell. Nothing worse than a parent being forced into helplessness and not being validated while doing everything to protect, obtain treatment, love, your suffering child.
My heart goes out to you and your child.
KT
happy to see some progress is being maid
Could muscle cramps/spasms be a by product of not getting enough oxygen to the muscles? All my electrolyte levels are normal. And is there anyone in the Clearwater/St Pete/Tampa area of Florida who treats this? I've had cardiac studies up the wazoo. Thanks
You need a patient? Our daughter is a severe ME patient in Ohio she is 24 1/2. She has been unwell for 14 yrs. Please can she come there to get tested?
Annie Balsbaugh Prayers! Please join the MEAction Ohio facebook page. We are trying to gather influencers to have a greater impact here in Ohio.
m.facebook.com/groups/160832157934747
Yes, please join the MEAction Ohio page. :)
Hellp im bound to my bed i feel like im loosing my life in front of my eyes if i go outside 1 day the other im bound to bed
My 13 yo son and I have pots. Often So hard to breathe.. I gave my dr. Your study and he is trying to get me mestinon. But it's not so easy as it's a drug that doesn't correlate with Insurance companies for pots. I do hope I get to try it out and that it helps.
There is an OTC herbal supplement with the same action as Mestinon. It's Huperzine A. It's been very helpful for me in the 50-100 mcg range though the standard dose is 400 mcg.
@ChooseLife I have always wondered about mitochondrial dysfunction. I originally suffered with gynecological diseases from a young age then developed severe M.E
I think there could be a link to why alot of women develop M.E while having diseases like Endometriosis and Adenomyosis.Some studies point that Endometriosis may be associated with mitochondrial dysfunction in cumulus cells
Would Mestinon be ok for someone with these illness's above?Thanks
Nkem Ndefo cheaper and probably more effective! Nice find
@@NkemNdefo Thank you for sharing about the Huperzine A. Can you share more specifically how it helped you? Thanks in advance...am nearly bedbound...I'm not fatigued, it's just that I start to get sensory overload just from getting up and walking to the bathroom, etc.
@@__OL__ I now take 50 mcg every other day. It gives me more energy and stamina. While it doesn't decreases my POTS heart rate spikes, I tolerate them with less symptoms. I have to be careful not to overdo activity because I will still have PEM. Best of luck!
Does anybody have rapid onset edema from the smallest effort in any tissue around active set of joints or connective tissue? I have no medical feedback as to what is happening or what tissues it's happening in to date. But these are to the degree of severely debilitating. I have never heard this discussed. Here's an example of my experience.
Minimal use of hands results in nearly immediate disfiguring level of swelling and puffiness, bright red and light blotchy skin that is hot to the touch and puts off radiant heat that can be felt by others. Also visible are dark blue raised and puffy veins all over the back of my hand that look like varicose veins? They ache deeply and are very painful to the touch. And when I accidentally touched or bumped it appears that something is bursting under the skin causing small to large raised what looks like blood blisters . The degree of pain is severe enough to make me cry. Using compression gloves while using hands at all prevents this from happening. If they are not worn during an activity and the symptoms mentioned above manifest, putting the gloves on reduces the pain level tremendously and shortens the time of recovery. Before I learned about that I would lay with my hands and feet if they were what was affected hanging off of the edges of an air mattress on the floor as it was excruciating if they were accidentally touched or even resting on a mattress. And there was a hyper protectiveness people walking to close in proximity 2 the location of my hands and feet.
Here's a quick list Quick list of body areas I'm able 2 to prevent this phenomenon from happening with accompanied with a named activity specific to that location on the body.
Feet, lower legs, ankles: Wearing compressing stockings prevent extreme swelling in my feet and lower legs. A compression styled Ace brand knee stabilizer prevents severe swelling of a lymph node located on the back of the knee and at the very top of the calf muscle area. The right knee is the only me affected by this symptom. The lymph node has been observed on Imaging as being enlarged and again heat can be felt radiating from the area and it is severely painful to the touch. The foot ankle and lower leg area symptoms are brought on by small bits of walking in my tiny apartment and will cause an immediate visible swelling that is so severe my ankles disappear under folds of swollen skin that actually can touch the floor beside my foot.
, tissues around elbows are affected by bending them a few times, or maintaining a bent formation at the elbow in order to, say, hold a phone or a small tablet. I have not found a compression item for use on this area of the body so I must prevent this from happening by supporting my arm with the other arm when possible. More often than not it is impossible to Stave off this symptom.
Shoulders are affected., wearing a splint for about 5 days post activity Provide support and more rapid healing.
Holding a hairbrush in my hand and attempting to keep my wrist from flexing against the reverse pressure from the actual pushing on the hair with the brush that is common with simply brushing your hair will consistently and without fail bring on this entire set of symptoms.
The skin on my arms is leather like and a nurse attempting to put in an IV described it as hide instead of skin. I experience cracking and then bleeding and cellulitis from staph infection from normal amount of staph found on everybody's skin in a healthy skin environment.
I get tendonitis in the connective tissue around any of the before mentioned joints from the amount of use I have described.
The swelling can be so bad it cuts off circulation to the degree I feel total numbness that can last for 24 to 48 hours before swelling recedes enough to allow blood flow to resume.
That's just a small example of a very painful and extremely debilitating body-wide phenomenon that I have been living with for at least 12 years at this point in my illness.
Extremely cognitively fatigued. Falling asleep several times attempting to compose this. exaggerated startle effect has kicked in and I have no energy at all to proofread. I hope somebody can make sense of this attempted composition because I'm exhausted to the point of tears from the effort to dictate this.
Maschelle Mashburn It seems like an autoimmune and/or connective tissue issue, which in fact is common in MECFS patients.
Myalgic Encephalomyelitis Global is a fb group that has information and support
Maschelle Mashburn Maschelle Mashburn thank you for your great efforts and I hope you find answers, information, and health.
Though I do not experience all or most of the things you described, especially not to the extent...after I read the part about the hair brush especially, I must ask...
1: How fast did the symptoms come on: for example days, months, years?
2: And did they all come at once or maybe start off with one episode of symptoms and then add up?
3: And please most importantly of you only find strength to answer one question , and whenever you feeel you are able please let me know, especially if the symptoms did not develop rapidly **did the symptoms start with way less severity than you described and slowly progress to those described?
Borrelia B. -- lyme-- is often seen with small fiber neuropathy, POTS, dysautomia, fatigue, light and sound sensitivity. And it is immunosuppressive, allowing reactivation of EBV. Perhaps a root cause.
I have been diagnosed with IBM but have so many symptoms of CFS it makes me wonder. Have been to Magnet clinic where PCP says she has no time for rare diseases, be your own advocate. Previous pcp's said is just aging, need fishoil, exercise more, lose weight, think positive, take more vitamins. Since diagnosis with this skeletal muscle wasting disease have been told hypoxia at night with elevated heart rate is weird but not worrisome by 2 pulmonologists and only sleep neuro validated muscles of respiration are going and ordered bipap. None of the specialties speak to each other, none look at lab work they didn't order. Heck, the last 2 times saw neuo (5th) he only shook my hand, no exam... so how can he assess the increase in weakness??? 39 yrs of working as RN and the MAGNET clinic will likely kill me.
I'm a patient of Dr. Systrom's and my experience with him and his team has been incredible. I made my appointment with him the week this video was published, and the appointment was scheduled 1 year out. I had been undiagnosed for many years, and just based on talking to him during my initial appointment he was confident that issues were SFN, preload failure, and oxygen extraction. - He was exactly on point.
I had the iCPET (it was less scary than it seems) done 2.5 weeks ago and immediately started on Mestinon. They said it may take a few months for me to see some improvements. If you're interested to see what the iCPET was like, I wrote about my experience here (with photos) - www.mentalolympian.com/a-new-chronic-fatigue-syndrome-treatment-available-after-diagnostic-icpet/
I'm really looking forward to seeing some improvements soon! If anything, I am just happy to have a diagnosis and doctor who believes me. I now have concrete test results showing real functional issues. I am hoping everything goes smoothly and they are able to help more patients who have been undiagnosed with me/cfs!
Sarah Kozak Thank you for sharing your story with us! I would be interested to hear any updates you have on whether you feel the treatment that has been prescribed has helped in any way? (If, of course you don’t mind sharing that information..🙂)
Unfortunately I live in the UK, so don’t have access to this amazing doctor, but I truly hope and pray that one day his thoughts and ways of practising spread and become more mainstream, so we can all have the opportunity to have real exploratory tests done. Obviously it would be beyond amazing if eventually there would be some kind of medical way to at least control the symptoms of CFS/ME, but I feel that even if the only positive at the moment, that comes from actually being correctly tested is a validation that there IS something physically wrong, it would be enormously helpful and would truly give sufferers a sense of hope that maybe one day we may actually be able to live a relatively ‘normal’ life. 🤞🙂
Dr. Sarah Myhill, an ME CFS specialist in the UK, published a book this year in the USA. I highly recommend reading: amzn.to/2QSP2Pu
Multidisciplinary dialogue doesn't happen unless maybe you go to a big teaching institution. So very frustrating being a patient. I was diagnosed with me/cfs and fibromyalgia at Mayo in Florida and then dumped back into my area with nobody knowing how to treat me.
Jana Kujawa
The medical industrial complex is crazy with its compartmentalizations.
I called Mayo in Florida. They said I have to go to their Minnesota location.
whats new people..i'm toast they lookN at TYMP now MNGIE with CFS as well God has it out for me eh...
95% of Patients diagnosed with ME/CFS have undiagnosed Ehlers Danlos Syndrome & some have also crossovers multiple types the other 5% have other connective tissue disorders like Marfan's etc. this is what Dr. Rodney Grahame finds from the Hypermobility Unit in London UK... I have myself seen EDS3 with Vascular EDS (VEDS) or other combinations involved...I have ME/CFS Fibro EDS 3 but no Genetic testing has been done on me thus far, who wants my blood samples?
Dear, now the cause of Chronic Fatigue Syndrome is found: radiation of microwave-oven(magnetron).
To stop you have to eliminate the oven out of the house.
The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor.
The distance between an oven and a person is very important.After a 3 months without microwaves health becomes better.
The victims are more sensible and also the distance between victim and oven is important.After long time obesity is possible.
(Also possible: nightmares, change of character)Most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the less radiation is allowed by law.
I had much very positive reactions, some people recovered entirely. Sometimes not because it was being tired through other causes or diseases,not the real cfs.