This is wonderful! I think this is a great idea. On a side note, I’m trained as a social scientist and can conduct ethnographic research. I’m much slower than I once was (I cannot work for the research group I was set to work for before my symptoms worsened), but I’m happy to help if you ever want to do an ethnographic study. I can help with that. Just wanted to offer in case it would help with the data collection and coding of experiences- I think it would help elevate the highly nuanced experiences of people in this community and also help us all understand how those of us with comorbidities or intersectional identities experience stressors/support from other factors in our lives … either exacerbating or mitigating severity of symptoms. I think it would be great to have this data at hand for the community and help push on the social lever to remove stigma as possible. Just food for thought. Zero worries if it doesn’t appeal to you. But wanted to offer. As far as questions. I’m curious how many people also have other diagnoses alongside CFS/ME. And how that is expressed in their daily lives. It could help us understand our experiences. Solidarity is healing. Thank you for this fabulous idea 🙌🏼 Can’t wait to see the polls
Did you have a virus prior to the onset of ME/CFS? Epstein Barr, etc) Did you also have a Major Traumatic event. (Ie unexpected death of a loved one) What type Dr diagnosed you? Have u been Dr. diagnosed with Fibromyalgia? Do you have trouble getting enough air. Do you have arthritis? How long have you had ME/CFS? Do you have a Doctor working with you? What kind? Does anything give you relief? Do you live with other family members? Do you live alone?
@@jennifertehanisarreal hi Jennifer Thanks for your reply. I read your comment and I have Many other difficult symptoms That I believe are coming from the original diagnosis of CFS. I Hope you're not at the bottom right now. Bless you
I’ve been battling this for 5 years and just now got diagnosed with CFS/ME and fibromyalgia. Last summer, I felt like I wanted to die. I felt like a burden and worthless. When you’re sleeping your life away, you don’t feel very useful. Luckily I’m blessed with my wife who picks me up when I’m low and reassured me everyday! “In sickness and in health.” She means it❤
@@BobbysWorld_of_Art hi Bobby. I understand being mostly bed bound. It is so awful for many reasons. Consider yourself very Blessed to have a wonderful wife. I am totally alone. However I have my amazing Service Dog who is my best friend. This illness is NOT for lightweights. Thanks for your reply.
Johnny, I would love to know how many people in this community are single and living on their own, as compared to those who may be married or may be living with a parent or loved one. Thank you!
Would love to hear 1) Where people think they got it, or how they got it. 2) Have they infected anyone close to them...family, friends, or co-workers? 3) Has anyone noticed "clusters" in their environs? Thank you for your channel ! These questions and answers could well prove to be a form of in depth research which hasn't been done before. Best of luck!
My mental health went downhill after being prescribed antidepressants. It was not just a nightmare itself, but I was not taken seriously by mental health professionals at the time. Now more and more people have come forward with side effects and withdrawal problems (and all the court cases) plus the whole thing with chemical imbalance not being real its a little more "allowed" to say I had a problem with the pills. I would not wish my experience on my worst enemy.
Antidepressants did help my mental health and my limb soreness I was experiencing but keep in mind that I've had depression far before ever contracting CFS/ME. I still struggle with feeling sad, etc because of my situation which is to be expected but I dont struggle to take care of my cats due to depression alone if that makes sense? Antidepressants will only go so far for situational depression in my unprofessional opinion. I had some weird side effects to SSRI's in the beginning which I was not anticipating at all. Could've possibly been because of the CFS/ME but I'm not 100% certain. Either way my doctor switched me to SNRIs and I've def noticed an improvement with my mental baseline. ☺️
I've been part of medical studies in Europe where I currently reside so I'm always happy to help! (I've had M.E since around late 2017) I would love to know about people's eating habits. I feel like my food "life" did a 180 after I got sick due to vitamin & nutrient needs, as well as due to meds, and one's body's "need" for energy. So I'd love literally any polls related to that since I never see or hear anyone talk about it?
@frh LOL that was a weird choice of words, but I meant my diet changed entirely. Things I could eat in the past I couldn't eat after I got ME, either due to nausea from medication, or needing different health benefits. I just meant food habits basically.
What do you use as an alternate focus so you can become disentangled from the suffering? Podcasts? Which ones? Movies? Your favorite one? Friendships? Who and how? Informative website? Which ones? Music? By whom?
These polls are awesome. Some possible questions (sorry if some were already asked): Do your pain symptoms occur mainly on one side of your body (not necessarily always on the same side)? Do you often experience severe headaches? Do you experience alcohol intolerance (e.g. causing muscle cramps)? Do you often notice petechiae on your body (that come and go)? Has your eyesight deteriorated? Do you have IBS? Are you sensitive to temperatures/temperature changes? Have you found a balance between pacing yourself and still doing things you love? Have you found a way to get some (even minor) exercise on a regular basis? Do car rides worsen your fatigue (either as a driver or a passenger)? Are you able to travel?
It would be very important to get data about how often you are not taken serious by doctors but also friends and family on top of everything else and how that impacts healing chances.
I wanted to put my arm around you and say, "Everyday, Shira. Or at least, almost every time I asked a medical professional to help me." This space that John is providing is invaluable because with enough studying and reading, I am finding so many people with shared experiences such as this one. I don't know anyone who has had a swift, smooth walk into this diagnosis.
I'd like to know how many of us experience severe vertigo? Also how do any of us who may be single navigate finding a relationship or more specifically telling or when to tell the new person about it & any other health chalkenges we may be living with. Thank you so much for these videos Johnny & I send 💖 to all!
I’d like to know more about the relationship between M.E./cfs and EBV reactivation as well as if mold exposure from water damaged buildings (mycotoxin illness/CIRS) can increase EBV. Do any antivirals actually reduce EBV reactivation ?
Hi my friend. My name ie Eileen. I'm 73 in a few days. And I have had M.E/CFS, for at least 41 years. The first three years were hell. I was 32. I had a hysterectomy. I could barely get out of bed. Foods that I had eating all my life, became like a poisen to me. And all these weird symptoms came out of no where. I live in the UK. And I remember going to my GP with a full scrap sheet of papper, full of all these weird things I have. She did loads of tests, bloat tests and so on. I'm sure you have all been through it. It took 5 years to get a diagnoses of M.E. I tried every treatment I could find, drugs supplements, diets and so on. I did Candida cleansing, and so the list goes on. Nothing ever worked. Then over the years I had periods of remission and relapses. I worked for myself in the good times. But I was never well. Then 8 years ago I had breast cancer surgery and radiotherapy. Ever since I have had Fibromyalgia. I even went Vegan for 3 years. I loved the diet, but became really ill, and lost two stone. I have been treated several times for sibo. I had to go back to eating animal products and fish. But I have been gluton and dairy free for over 40 years. Because of the weight loss I had a CT Scan and a Pet Scan. It's found I have cancer again. On my last hospital visit I got Covid. Now14 months on and I'm still suffering from long Covid. I have found I'm histamine intolerance, and may have some thing called Mast Cell Activation Syndrome. But most of the things that could help makes me ill. In fact every thing pretty much that goes into my stomach makes me ill. Most foods, supplements and drugs. This is far worse since Covid, than it was when I first got M.E. . This is a living death. Every test I need is private. I can't afford to keep spending money I no longer have. Does any one else have mast cell activation syndrome. Since Covid I have more allergys than before. I wish you all the luck in the world.
Eileen Im really sorry to hear about your health struggles. Try going on Facebook and joining "mast cell" support groups or even M.E. support groups. You are likely to find people with similar health issues and they may be able to share things that may help!
@@fight4me747 Hi. Thank you for your advice. I have been in touch with the mast cell society. But to get tests is big money. The NHS can't do the tests I need. But as I can't take any thing, my G P said even if she could do tests. There is nothing any one can give me. Long Covid is so much worse than M.E. But as I'm already sick, there seems no place to go. I have all the M.E symptoms, plus Covid. I like you have list all my muscle tone. I try to follow all your videos. I'm not having cancer treatment this time. But trying the natural approach through clean eating, meditation, breathing exercises, and brain training. I look forward to more of your videos. God Bless you.
Hi Eileen! Man I've "only" been dealing with M.E for close to 6 years, and I can't imagine living with it for so long. 💔 I got MCAS too. I NEVER used to be allergic to food and suddenly, I've been come allergic and sensitive to so many things, including food, but also extending to vapors from various things, medication etc. It's so frustrating. 💔 I pray for a cure every day.
@@sisterslothington Hey friend. I'm sorry to hear of your struggle. It doesn't matter how long some one has been ill, it's your struggle. And it's hell. I have haduos and downs over the years. But when I had breast cancer 8 years ago, I have had fibro ever since. I have had many injuries which has needed long term use of pain killers. Many rounds of antibiotics for sibo. Treatment for Candida. But it wasn't until Covid that I'm still struggling with long Covid, that I learned about Mell cell activation. I think I may have had it all my life. I have done several lots of brain training for months at a time. It's never worked for me. Breathing exercises every day for moths hasn't worked. I have only a handful of foods I can now eat since Covid. Most supplements now make me ill. It's all the fillers and binders that makes me ill. They talk about sibo, Candida and leaky gut. Parasites, heavy metals, mould electives and so the list goes on. It all has to be paid for. And not every one has thousands stashed away. All my savings have gone over the 41 years I have been ill. I live in the U K. And just to see a functional doctor us about £500 with out any tests. We don't work any more because of our age and all our health issues. My husband had a heart condition, and long Covid. He was a postie until he got Covid. He was 70 when he packed up work. That's 14 months ago. I have lost so much weight, that my muscles are so week now. I don't drive far these days. Which makes life difficult, as I live right out in the country. I pray that either I get better, or I die. I have had enough. I can't understand why some people get well, and others don't. Even using the same treatments. That's why I have been diving deeper to find an underlying cause. We must all keep in touch and try to help each other. I wish you all the luck in the world. It would be nice to hear how you first got sick, and what things you have tried, and what benefits you may have had. I'm wondering if mast cell us behind our ill health all along. Good luck.
Does anyones parents or children have similar symptoms? Daughter 1 has Intracranial Hypertension as well as supposedly unrelated auto-immune conditions (I’m suspecting ME as well). Daughter 2 has Morphea (localised scleroderma), is hyper mobile (maybe EDS?), and fibromyalgia as well as PEM so I’m guessing she too has undiagnosed ME. I just found out I have borderline cerebella tonsillar herniation but do wonder if I did an upright scan, rather than lying down if it would be more than borderline. I also have POTS, fibromyalgia, psoriatic arthritis, among others. I guess I’m just trying to find connections, one that’s come up is connective tissue. It is extremely hard to find any doctors here in Australia who know much about more than their own specialty, we don’t have any MECFS specialists here that I know of. Any polls regarding what conditions others with MECFS have or their immediate family would be interesting to see.
how would you recommend talking to doctors if you suspect you have ME/CFS - I was diagnosed with Fibromyalgia many years ago - and last year after an illness and a reaction to a vaccines my symptoms changed enough to match the other criteria. i'm having a hard time getting doctors in my area to take my conditions for anything seriously (small minded town) at the very least when i go to a dentist or an eye doctor and have to mention anything or refuse a medication i know i will react adversely too - HELP
Premorbid anxiety/depression. Use of psychotropic medication (antidepressants or antipsychotics). Diagnosis of ASD or ADD - personal or familial. Hypermobile as per Beighton Score. Head injuries - minor concussion, meningitis, TBI. Illness duration. Sleep disturbances (insomnia / hypersomnia). Education level. Physical activity before illness (sedentary or athletic lifestyle). Dietary restrictions. Significant weight loss leading up to M.E (3 months prior).
I was diagnosed with M.E. in 1992 by a professor in England U.K. i came to U.S.A. in 2003 so my mum could look after me (parents retired from U.K. to U.S.A.). I was absolutely shocked that various doctors i saw had either never heard of M.E. or its long name of myalgic encephalomyelitis, they had heard of chronic fatigue but woul😅d not accept that it was a very real physical disease. For the last 20 I have not had any medical help except for my Psychiatrist who at first knew virtually nothing about M.E. so I started to educate him about this life destroying disease. I am on a temporary fix of Adderall and Narcolepsy medication so some days i can actually get out of bed and walk around the house. It has been 30 soul destroying years living with M.E.
Questions: Do you ever get partial paralysis (limb or otherwise) and do you experience pain with it? Did physio help with your pain? Did seeing an osteopath help with your pain? Have you found that having connections to other people with M.E helpful? (This one might be biased since we're all watching you!) Is your PEM set off primarily by physical or mental activities? (or both) Have you increased meat or vegetables in your diet? Have you found interacting with animals helpful? That last one is very interesting to me. Even when I had severe symptoms that left me house bound, my one joy as a teen was surprisingly going horse riding! I kept it up for a whole year when I wasn't ever able to manage more than 3 months in school/college. That socialisation with the riding school staff and the horses themselves did me a lot of good
I would be interested to see 'what I eat in a day' from you. I often watch these from other people to try and gain some inspiration. It would be nice to see what is helping you. Only just discovered you, love the content.
To share a few suggestions for poll questions: A) Did you have significant weight loss (>4kg women / >6kg men) 6 months before developing M.E.? B) Do you have joint hypermobility? C) Do you or a blood relative have a neurodevelopmental condition such as ADD or Autism? D) Do you have a resting pulse lower than 60bpm? E) Were you ‘athletic’ before M.E (more than 5hrs aerobic exercise a week)? F) Do you have visible signs of orthostatic intolerance, such as pallor or mottled/discoloured skin from blood pooling? G) Do you have dyslexic-like symptoms, visual distortions or word processioning difficulties? H) Are you less able to recall long term memories? I) Do you follow a specific diet regimen, such as Ketogenic or Low FODMAP? J) Were you diagnosed within a year of your first symptoms? K) Did you develop the condition in childhood or adolescence? L) Have you been ill for longer than 4 years? These questions probably need rephrasing as some feel a bit vague. Also, there are a few more than I had originally intended (sorry). The question about weight loss was something I was curious about because it was a trigger for me, and I wondered if it had anything to do with metabolic activity? Wish I could explain it in more detail. In the language of Brain Fog: less food = less energy = physiologic stressor = metabolic adaptation = M.E. (I hope that made sense!) Thank you for everything you do with this channel. Your videos are of immense value and help.
Sending love to anyone reading this. I’ve been suffering for years. Was hospitalized from a “bad viral infection “ I have never been the same. Very extreme psychosomatic symptoms. Neurological indifference, very few can actually understand. I experience a lot of different symptoms. But one I truly want to know if others are experiencing tremendous eye discomfort to light sensitivity!? I get it so bad somedays that I have to wear sunglasses inside, not outside. If the space is too bright to be able to see, my eyes will uncontrollably be watering. IBS is the worst I feel for anyone struggling with this one. I could pee like 10 times in 1 hour. No joke. Are this flare ups, possibly linked to nerves within our body mind connection. I think a lot plays within our psychosomatic nervous system, perhaps something we could ponder on a serious note for doctors and researchers! I got 2 spinal taps when I had the flu… bad viral infection… I had 104 fever… my body and brain was trying so hard to survive…how could anyone be left the same after…the flu is VERY mysterious… experiences vary mild to extreme!!! The ones that have extreme are brushed underneath the table because it’s just too complex…BS!! Dialogue can help, try and solve✨🙏
Do you get the sense that your internal organs are vibrating or do you experience a sense of vibrating when lying down or even sleeping? Have you had severe laryngitis resulting in vocal cord surgery because you'd lost the collagen in your vocal cords? Do you get the feeling that you are aging more rapidly than normal? Do you feel the speed of aging is accelerating? Do you get shingle, hives, or herpes zoster when your body is severely stressed? If so, located in a single area of in general? Do you get night sweats which are similar to hot flashes but they happen in your sleep? Do you have problems with TMJ? Have you ever had an attack of "cold weather asthma" where breathing cold where caused sever breathing problems? Have you lost weight? What percentage of body weight? Do you have sensitivity to medications where you have unusual reactions to things which are normally easy for others? Do you feel that your body's engine governor is broken? (A governor, or speed limiter or controller, is a device used to measure and regulate the speed of a machine, such as an engine.) Do small injuries seem to take an unusually long time to heal? Are you suffering from reduced sense of balance and stability? Do you have a story of family or personal trauma or tragedy? What kind of grades did you get in high school? What kind of grades did you get in college? How far did your education extend: () high school? () 2 year college? () BA or BS? () MA or MS? () Phd, MD, or Doctorate? How many years did it take for you be properly diagnosed? Were you ever misdiagnosed with something else that was not considered a comorbidity but a separate illness? Does heat affect your body function? In what way? Does cold affect your body function? In what way? Does anyone else have unusual biomarkers such as "Redhead Syndrome" known also as MC1R? Have you sought genetic typing, such as 23andMe or another group collecting medical data? Did you find it helpful? Did your doctor suggest it? Did you grow up in a military or industrial environment where you lived around or on the same base as toxic chemicals? Did you live in a place where you were in an area which was sprayed with DDT on a regular basis to control insects such as mosquitos? Did you ever go through a time where you had to get multiple protective injections for travel or a new residence? What diagnoses have you received other than or prior to ME/CFS such as lupus, mononucleosis, Epstein Barr? Which ones? When I was much younger and in the throes of chronic illness, I invented a system of activity management that I called "Body Bucks". The idea was to allow me to increase my activity but to manage it so I didn't end up worse than when I started. I knew that I had a four hour window of activity so if I wanted to do something (attend a movie, special event, a class) on Wednesday, for example, I would pre-fill the bank by not using my four hours on Tuesday and not do anything as a payback gesture on Friday even if I didn't feel terrible from Wednesday's activity. IF I didn't pre-fill or payback, I would pay dearly for multiple days or weeks. I still use a modified version. I have reduced and control the intensity of the activity. I no longer fill my activity card with physically demanding activities like snow skiing or technical climbing. Reduced time in activity -- yes! Reduce intensity in activity -- yes? Monitor my body like it's a four-year old child who can't make good decisions -- yes!
I would love to know how many people have improved ,got stable or deteriorated. Also if the improved or got stable it was because of pacing, supplements, medication, get etc
@@fight4me747 great! My illness has gotten worse over time and the biggest issue I have is distinguishing between what my own choises and actions are creating or the illness just getting worse. This gives me such anxiety because I don't know if my focus should be on preserving energy or building up stamina or simple not loosing the little stamina I still have.
I feel worse in that I’m in a loop. Start to feel better, do something, get worse and it continues on from that. I’m pretty much at the end of myself if I’m honest.
I'll post this one soon. I know its a tough place to be, but welcome to the community. Its a tough disease but we try and help each other in the community. I hope you find some helpful info.
Great Suggestions everyone! Thank you! I will do my best to get to all of them.
We know more than Drs.
It’s more important to us than to most doctors..
This is wonderful! I think this is a great idea. On a side note, I’m trained as a social scientist and can conduct ethnographic research. I’m much slower than I once was (I cannot work for the research group I was set to work for before my symptoms worsened), but I’m happy to help if you ever want to do an ethnographic study. I can help with that. Just wanted to offer in case it would help with the data collection and coding of experiences- I think it would help elevate the highly nuanced experiences of people in this community and also help us all understand how those of us with comorbidities or intersectional identities experience stressors/support from other factors in our lives … either exacerbating or mitigating severity of symptoms. I think it would be great to have this data at hand for the community and help push on the social lever to remove stigma as possible. Just food for thought. Zero worries if it doesn’t appeal to you. But wanted to offer. As far as questions. I’m curious how many people also have other diagnoses alongside CFS/ME. And how that is expressed in their daily lives. It could help us understand our experiences. Solidarity is healing. Thank you for this fabulous idea 🙌🏼 Can’t wait to see the polls
Did you have a virus prior to the onset of ME/CFS? Epstein Barr, etc)
Did you also have a Major Traumatic event. (Ie unexpected death of a loved one)
What type Dr diagnosed you?
Have u been Dr. diagnosed with Fibromyalgia?
Do you have trouble getting enough air.
Do you have arthritis?
How long have you had ME/CFS?
Do you have a Doctor working with you?
What kind?
Does anything give you relief?
Do you live with other family members?
Do you live alone?
Question: Do you ever feel like you are Dying?
Sometimes it’s so bad, I’ve wondered that too. Community is so important. We are all never alone in our struggles 🫶🏼 Hope you’re hanging in there too
@@jennifertehanisarreal hi Jennifer Thanks for your reply. I read your comment and I have Many other difficult symptoms That I believe are coming from the original diagnosis of CFS. I Hope you're not at the bottom right now. Bless you
I’ve been battling this for 5 years and just now got diagnosed with CFS/ME and fibromyalgia. Last summer, I felt like I wanted to die. I felt like a burden and worthless. When you’re sleeping your life away, you don’t feel very useful. Luckily I’m blessed with my wife who picks me up when I’m low and reassured me everyday! “In sickness and in health.” She means it❤
@@BobbysWorld_of_Art hi Bobby. I understand being mostly bed bound. It is so awful for many reasons. Consider yourself very Blessed to have a wonderful wife. I am totally alone. However I have my amazing Service Dog who is my best friend. This illness is NOT for lightweights. Thanks for your reply.
@@justme3273 thank you so much. I am so sorry for what you have to deal with. Believe me I understand.
Johnny, I would love to know how many people in this community are single and living on their own, as compared to those who may be married or may be living with a parent or loved one. Thank you!
Just made the poll 😀
Alright! I went to the community tab and completed all of the surveys. Great job, Johnny!🌻
Would love to hear
1) Where people think they got it, or how they got it.
2) Have they infected anyone close to them...family, friends, or co-workers?
3) Has anyone noticed "clusters" in their environs?
Thank you for your channel !
These questions and answers could well prove to be a form of in depth research which hasn't been done before.
Best of luck!
good stuff Johnny! appreciate the channel
I would like a poll asking if antidepressants have improved anyone’s mental health. Or maybe a poll to know if therapy has helped mental health.
My mental health went downhill after being prescribed antidepressants. It was not just a nightmare itself, but I was not taken seriously by mental health professionals at the time. Now more and more people have come forward with side effects and withdrawal problems (and all the court cases) plus the whole thing with chemical imbalance not being real its a little more "allowed" to say I had a problem with the pills. I would not wish my experience on my worst enemy.
Antidepressants did help my mental health and my limb soreness I was experiencing but keep in mind that I've had depression far before ever contracting CFS/ME. I still struggle with feeling sad, etc because of my situation which is to be expected but I dont struggle to take care of my cats due to depression alone if that makes sense? Antidepressants will only go so far for situational depression in my unprofessional opinion. I had some weird side effects to SSRI's in the beginning which I was not anticipating at all. Could've possibly been because of the CFS/ME but I'm not 100% certain. Either way my doctor switched me to SNRIs and I've def noticed an improvement with my mental baseline. ☺️
@@hellokittydoll2794 do you have hypomobility
I've been part of medical studies in Europe where I currently reside so I'm always happy to help! (I've had M.E since around late 2017) I would love to know about people's eating habits. I feel like my food "life" did a 180 after I got sick due to vitamin & nutrient needs, as well as due to meds, and one's body's "need" for energy. So I'd love literally any polls related to that since I never see or hear anyone talk about it?
Thats a good one!
@@Anchor7 Thank you! I'm so curious!
Can you explain what you mean by food life?
@frh LOL that was a weird choice of words, but I meant my diet changed entirely. Things I could eat in the past I couldn't eat after I got ME, either due to nausea from medication, or needing different health benefits. I just meant food habits basically.
What do you use as an alternate focus so you can become disentangled from the suffering? Podcasts? Which ones? Movies? Your favorite one? Friendships? Who and how? Informative website? Which ones? Music? By whom?
These polls are awesome. Some possible questions (sorry if some were already asked):
Do your pain symptoms occur mainly on one side of your body (not necessarily always on the same side)?
Do you often experience severe headaches?
Do you experience alcohol intolerance (e.g. causing muscle cramps)?
Do you often notice petechiae on your body (that come and go)?
Has your eyesight deteriorated?
Do you have IBS?
Are you sensitive to temperatures/temperature changes?
Have you found a balance between pacing yourself and still doing things you love?
Have you found a way to get some (even minor) exercise on a regular basis?
Do car rides worsen your fatigue (either as a driver or a passenger)?
Are you able to travel?
Just posted one about temp. 😀
@@fight4me747 Awesome, I'll be keeping an eye on that one!
It would be very important to get data about how often you are not taken serious by doctors but also friends and family on top of everything else and how that impacts healing chances.
I wanted to put my arm around you and say, "Everyday, Shira. Or at least, almost every time I asked a medical professional to help me." This space that John is providing is invaluable because with enough studying and reading, I am finding so many people with shared experiences such as this one. I don't know anyone who has had a swift, smooth walk into this diagnosis.
Just posted a poll on this. 😀
Thanks for your channel. Will definitely participate in anything that will help bring awareness to this insidious illness 💜🙏
I'd like to know how many of us experience severe vertigo? Also how do any of us who may be single navigate finding a relationship or more specifically telling or when to tell the new person about it & any other health chalkenges we may be living with. Thank you so much for these videos Johnny & I send 💖 to all!
I’d like to know more about the relationship between M.E./cfs and EBV reactivation as well as if mold exposure from water damaged buildings (mycotoxin illness/CIRS) can increase EBV. Do any antivirals actually reduce EBV reactivation ?
Yes !! Same here. I have EBV, and 4 yrs ago moved into a home with toxic mold behind the walls, then my 2nd C-vax pushed me over the edge.
I would love to hear if anyone is experiencing falls like me.
Hey Whitney, have you ruled out MS?
Hi my friend. My name ie Eileen. I'm 73 in a few days. And I have had M.E/CFS, for at least 41 years. The first three years were hell. I was 32. I had a hysterectomy. I could barely get out of bed. Foods that I had eating all my life, became like a poisen to me. And all these weird symptoms came out of no where. I live in the UK. And I remember going to my GP with a full scrap sheet of papper, full of all these weird things I have. She did loads of tests, bloat tests and so on. I'm sure you have all been through it. It took 5 years to get a diagnoses of M.E. I tried every treatment I could find, drugs supplements, diets and so on. I did Candida cleansing, and so the list goes on. Nothing ever worked. Then over the years I had periods of remission and relapses. I worked for myself in the good times. But I was never well. Then 8 years ago I had breast cancer surgery and radiotherapy. Ever since I have had Fibromyalgia. I even went Vegan for 3 years. I loved the diet, but became really ill, and lost two stone. I have been treated several times for sibo. I had to go back to eating animal products and fish. But I have been gluton and dairy free for over 40 years. Because of the weight loss I had a CT Scan and a Pet Scan. It's found I have cancer again. On my last hospital visit I got Covid. Now14 months on and I'm still suffering from long Covid. I have found I'm histamine intolerance, and may have some thing called Mast Cell Activation Syndrome. But most of the things that could help makes me ill. In fact every thing pretty much that goes into my stomach makes me ill. Most foods, supplements and drugs. This is far worse since Covid, than it was when I first got M.E. . This is a living death. Every test I need is private. I can't afford to keep spending money I no longer have. Does any one else have mast cell activation syndrome. Since Covid I have more allergys than before. I wish you all the luck in the world.
Eileen Im really sorry to hear about your health struggles. Try going on Facebook and joining "mast cell" support groups or even M.E. support groups. You are likely to find people with similar health issues and they may be able to share things that may help!
@@fight4me747 Hi. Thank you for your advice. I have been in touch with the mast cell society. But to get tests is big money. The NHS can't do the tests I need. But as I can't take any thing, my G P said even if she could do tests. There is nothing any one can give me. Long Covid is so much worse than M.E. But as I'm already sick, there seems no place to go. I have all the M.E symptoms, plus Covid. I like you have list all my muscle tone. I try to follow all your videos. I'm not having cancer treatment this time. But trying the natural approach through clean eating, meditation, breathing exercises, and brain training. I look forward to more of your videos. God Bless you.
Hi Eileen! Man I've "only" been dealing with M.E for close to 6 years, and I can't imagine living with it for so long. 💔 I got MCAS too. I NEVER used to be allergic to food and suddenly, I've been come allergic and sensitive to so many things, including food, but also extending to vapors from various things, medication etc. It's so frustrating. 💔 I pray for a cure every day.
@@sisterslothington Hey friend. I'm sorry to hear of your struggle. It doesn't matter how long some one has been ill, it's your struggle. And it's hell. I have haduos and downs over the years. But when I had breast cancer 8 years ago, I have had fibro ever since. I have had many injuries which has needed long term use of pain killers. Many rounds of antibiotics for sibo. Treatment for Candida. But it wasn't until Covid that I'm still struggling with long Covid, that I learned about Mell cell activation. I think I may have had it all my life. I have done several lots of brain training for months at a time. It's never worked for me. Breathing exercises every day for moths hasn't worked. I have only a handful of foods I can now eat since Covid. Most supplements now make me ill. It's all the fillers and binders that makes me ill. They talk about sibo, Candida and leaky gut. Parasites, heavy metals, mould electives and so the list goes on. It all has to be paid for. And not every one has thousands stashed away. All my savings have gone over the 41 years I have been ill. I live in the U K. And just to see a functional doctor us about £500 with out any tests. We don't work any more because of our age and all our health issues. My husband had a heart condition, and long Covid. He was a postie until he got Covid. He was 70 when he packed up work. That's 14 months ago. I have lost so much weight, that my muscles are so week now. I don't drive far these days. Which makes life difficult, as I live right out in the country. I pray that either I get better, or I die. I have had enough. I can't understand why some people get well, and others don't. Even using the same treatments. That's why I have been diving deeper to find an underlying cause. We must all keep in touch and try to help each other. I wish you all the luck in the world. It would be nice to hear how you first got sick, and what things you have tried, and what benefits you may have had. I'm wondering if mast cell us behind our ill health all along. Good luck.
Does anyones parents or children have similar symptoms? Daughter 1 has Intracranial Hypertension as well as supposedly unrelated auto-immune conditions (I’m suspecting ME as well). Daughter 2 has Morphea (localised scleroderma), is hyper mobile (maybe EDS?), and fibromyalgia as well as PEM so I’m guessing she too has undiagnosed ME.
I just found out I have borderline cerebella tonsillar herniation but do wonder if I did an upright scan, rather than lying down if it would be more than borderline. I also have POTS, fibromyalgia, psoriatic arthritis, among others. I guess I’m just trying to find connections, one that’s come up is connective tissue.
It is extremely hard to find any doctors here in Australia who know much about more than their own specialty, we don’t have any MECFS specialists here that I know of.
Any polls regarding what conditions others with MECFS have or their immediate family would be interesting to see.
Posting this one now. 😀
would love to know if its common for panic attacks when crashing bad? thanks for your videos
I have increased depression and anxiety right before and during a crash.
For me absolutly
how would you recommend talking to doctors if you suspect you have ME/CFS - I was diagnosed with Fibromyalgia many years ago - and last year after an illness and a reaction to a vaccines my symptoms changed enough to match the other criteria. i'm having a hard time getting doctors in my area to take my conditions for anything seriously (small minded town) at the very least when i go to a dentist or an eye doctor and have to mention anything or refuse a medication i know i will react adversely too - HELP
What do you do to encourage yourself or draw encouragement and hope into your life?
Family, faith and friends.
@@fight4me747 Yes! We are blessed. I hunt for things where I can be grateful. And I have fuzzy Stella. She is my family.
@@fight4me747 Me, too. Family is my dog.
Premorbid anxiety/depression. Use of psychotropic medication (antidepressants or antipsychotics). Diagnosis of ASD or ADD - personal or familial. Hypermobile as per Beighton Score. Head injuries - minor concussion, meningitis, TBI. Illness duration. Sleep disturbances (insomnia / hypersomnia). Education level. Physical activity before illness (sedentary or athletic lifestyle). Dietary restrictions. Significant weight loss leading up to M.E (3 months prior).
I would love to participate in your polls. Where can I find them?
Oh never mind found it on the RUclips app community tab.👌
Poll question: if you cannot work, do you get any kind of retirement or how do you pay your rent? For how many years have you been without any income?
I was diagnosed with M.E. in 1992 by a professor in England U.K. i came to U.S.A. in 2003 so my mum could look after me (parents retired from U.K. to U.S.A.). I was absolutely shocked that various doctors i saw had either never heard of M.E. or its long name of myalgic encephalomyelitis, they had heard of chronic fatigue but woul😅d not accept that it was a very real physical disease. For the last 20 I have not had any medical help except for my Psychiatrist who at first knew virtually nothing about M.E. so I started to educate him about this life destroying disease. I am on a temporary fix of Adderall and Narcolepsy medication so some days i can actually get out of bed and walk around the house. It has been 30 soul destroying years living with M.E.
Questions: Do you ever get partial paralysis (limb or otherwise) and do you experience pain with it?
Did physio help with your pain?
Did seeing an osteopath help with your pain?
Have you found that having connections to other people with M.E helpful? (This one might be biased since we're all watching you!)
Is your PEM set off primarily by physical or mental activities? (or both)
Have you increased meat or vegetables in your diet?
Have you found interacting with animals helpful?
That last one is very interesting to me. Even when I had severe symptoms that left me house bound, my one joy as a teen was surprisingly going horse riding! I kept it up for a whole year when I wasn't ever able to manage more than 3 months in school/college. That socialisation with the riding school staff and the horses themselves did me a lot of good
I would be interested to see 'what I eat in a day' from you. I often watch these from other people to try and gain some inspiration. It would be nice to see what is helping you. Only just discovered you, love the content.
To share a few suggestions for poll questions:
A) Did you have significant weight loss (>4kg women / >6kg men) 6 months before developing M.E.?
B) Do you have joint hypermobility?
C) Do you or a blood relative have a neurodevelopmental condition such as ADD or Autism?
D) Do you have a resting pulse lower than 60bpm?
E) Were you ‘athletic’ before M.E (more than 5hrs aerobic exercise a week)?
F) Do you have visible signs of orthostatic intolerance, such as pallor or mottled/discoloured skin from blood pooling?
G) Do you have dyslexic-like symptoms, visual distortions or word processioning difficulties?
H) Are you less able to recall long term memories?
I) Do you follow a specific diet regimen, such as Ketogenic or Low FODMAP?
J) Were you diagnosed within a year of your first symptoms?
K) Did you develop the condition in childhood or adolescence?
L) Have you been ill for longer than 4 years?
These questions probably need rephrasing as some feel a bit vague. Also, there are a few more than I had originally intended (sorry). The question about weight loss was something I was curious about because it was a trigger for me, and I wondered if it had anything to do with metabolic activity? Wish I could explain it in more detail. In the language of Brain Fog: less food = less energy = physiologic stressor = metabolic adaptation = M.E. (I hope that made sense!)
Thank you for everything you do with this channel. Your videos are of immense value and help.
Hey there! Im going to post a few of these as soon as I can 😀
Sending love to anyone reading this. I’ve been suffering for years. Was hospitalized from a “bad viral infection “ I have never been the same. Very extreme psychosomatic symptoms. Neurological indifference, very few can actually understand. I experience a lot of different symptoms. But one I truly want to know if others are experiencing tremendous eye discomfort to light sensitivity!? I get it so bad somedays that I have to wear sunglasses inside, not outside. If the space is too bright to be able to see, my eyes will uncontrollably be watering. IBS is the worst I feel for anyone struggling with this one. I could pee like 10 times in 1 hour. No joke. Are this flare ups, possibly linked to nerves within our body mind connection. I think a lot plays within our psychosomatic nervous system, perhaps something we could ponder on a serious note for doctors and researchers! I got 2 spinal taps when I had the flu… bad viral infection… I had 104 fever… my body and brain was trying so hard to survive…how could anyone be left the same after…the flu is VERY mysterious… experiences vary mild to extreme!!! The ones that have extreme are brushed underneath the table because it’s just too complex…BS!! Dialogue can help, try and solve✨🙏
What would you say your most beneficial treatment has been?
Great idea, i have to ask in the form of multiple question so I will list things I've heard work
Nothing but pacing has worked for me. But would love to see a poll as well
I think a good poll question might be cause! Thank you for doing this!
Thats a good topic, but I have to ask in the form of multiple choice.
I NEED A DOCTOR HOPEFULLY SPECIALIZING M.E.
THANK YOU❤
Have you tried joining ME support groups on FB? They can be very helpful in finding Docs/info.
Experiences from single people approaching dating or trying to find a life partner.
❤❤
Do you get the sense that your internal organs are vibrating or do you experience a sense of vibrating when lying down or even sleeping?
Have you had severe laryngitis resulting in vocal cord surgery because you'd lost the collagen in your vocal cords?
Do you get the feeling that you are aging more rapidly than normal? Do you feel the speed of aging is accelerating?
Do you get shingle, hives, or herpes zoster when your body is severely stressed? If so, located in a single area of in general?
Do you get night sweats which are similar to hot flashes but they happen in your sleep?
Do you have problems with TMJ?
Have you ever had an attack of "cold weather asthma" where breathing cold where caused sever breathing problems?
Have you lost weight? What percentage of body weight?
Do you have sensitivity to medications where you have unusual reactions to things which are normally easy for others?
Do you feel that your body's engine governor is broken? (A governor, or speed limiter or controller, is a device used to measure
and regulate the speed of a machine, such as an engine.)
Do small injuries seem to take an unusually long time to heal?
Are you suffering from reduced sense of balance and stability?
Do you have a story of family or personal trauma or tragedy?
What kind of grades did you get in high school? What kind of grades did you get in college?
How far did your education extend: () high school? () 2 year college? () BA or BS? () MA or MS? () Phd, MD, or Doctorate?
How many years did it take for you be properly diagnosed? Were you ever misdiagnosed with something else that was not
considered a comorbidity but a separate illness?
Does heat affect your body function? In what way?
Does cold affect your body function? In what way?
Does anyone else have unusual biomarkers such as "Redhead Syndrome" known also as MC1R?
Have you sought genetic typing, such as 23andMe or another group collecting medical data? Did you find it helpful? Did your
doctor suggest it?
Did you grow up in a military or industrial environment where you lived around or on the same base as toxic chemicals?
Did you live in a place where you were in an area which was sprayed with DDT on a regular basis to control insects such as
mosquitos?
Did you ever go through a time where you had to get multiple protective injections for travel or a new residence?
What diagnoses have you received other than or prior to ME/CFS such as lupus, mononucleosis, Epstein Barr? Which ones?
When I was much younger and in the throes of chronic illness, I invented a system of activity management that I called "Body Bucks". The idea was to allow me to increase my activity but to manage it so I didn't end up worse than when I started. I knew that I had a four hour window of activity so if I wanted to do something (attend a movie, special event, a class) on Wednesday, for example, I would pre-fill the bank by not using my four hours on Tuesday and not do anything as a payback gesture on Friday even if I didn't feel terrible from Wednesday's activity. IF I didn't pre-fill or payback, I would pay dearly for multiple days or weeks. I still use a modified version. I have reduced and control the intensity of the activity. I no longer fill my activity card with physically demanding activities like snow skiing or technical climbing. Reduced time in activity -- yes! Reduce intensity in activity -- yes? Monitor my body like it's a four-year old child who can't make good decisions -- yes!
I would like to see a poll on how many M.E. sufferers have been denied serious help because the doctor they saw did not believe in M.E.
How many are on feeding tubes and their severity level.
I would love to know how many people have improved ,got stable or deteriorated. Also if the improved or got stable it was because of pacing, supplements, medication, get etc
This will be my next poll 🤙🏼
@@fight4me747 great! My illness has gotten worse over time and the biggest issue I have is distinguishing between what my own choises and actions are creating or the illness just getting worse. This gives me such anxiety because I don't know if my focus should be on preserving energy or building up stamina or simple not loosing the little stamina I still have.
I feel worse in that I’m in a loop. Start to feel better, do something, get worse and it continues on from that. I’m pretty much at the end of myself if I’m honest.
@@kimbykimbers3750 I know how you feel it is so disheartning.
Why don't you put a disclaimer on your presentations?
What has improved symptoms?
LDN, Vit D, coQ10 and probiotics
I want to confirm if others with ME have 24/7 burning scalp and intense head pressure in addition to brain fog
Length of illness.
I am new to ME/Long Covid
Interested to know Work/employment:
Full Time:
Part Time:
Freelance:
Unemployed:
I'll post this one soon. I know its a tough place to be, but welcome to the community. Its a tough disease but we try and help each other in the community. I hope you find some helpful info.
@@fight4me747 thanks bro! Really like your videos