The interesting question is whether these phenomenon are second (or nth) order effects of some other underlying pathology. Clearly the human body is a set of very complex biochemical / mechanical systems that interact in subtle ways. I can only hope that research results like this will get more physicians to appreciate the limits of current medical knowledge and make them more likely to accept that patients complaining of confusing sets of symptoms might actually be suffering from physiological illnesses as opposed to psychological problems. Just because current widely available medical technology does not detect abnormalities do not mean abnormalities do not exist.
I’ve been living with this a longtime and it has robbed me of all joy . You literally can’t do much at all . On a good day you may be able to do some normal things , but this may be followed five days of exhaustion
My husband doesn't understand it and refuses to help me with house work. I get he works during the day and I feel bad for not being able to do more but he's not supportive . So everything keeps building and its getting more and more of a mess in the house, it's extremely overwhelming but I'm the only one that's going to do it. It's very frustrating and depressing. It makes you feel completely alone.
@@MichelleLee-bg2bu I recently decided to give in to my rheumatologist and try a biologic medicine for rheumatory arthritis. I still have some pain , but MUCH less fatigue. These medicines can have serious side effects but I was desperate. It has definitely changed the fatigue level.
@@LaraCroft2169 unfortunately I'm very sensitive to alot of medications, I usually always get adverse side effects so I can't take a whole lot. Alot of it is because since I've been depressed and because of the fatigue I've been sitting and lay around alot and it's totally messed up my posture, where all my muscles are in knots and pulled forward and down if that makes sense. So I'm trying to correct my posture but I'm at the beginning of it. It's painful and very frustrating. I'm at the beginning of all of this actually because my doctor just figured out that it's fibromyalgia. I'll probably have to go back to the rheumatologist again. I was positive for a non specific autoimmune disorder.
@@MichelleLee-bg2bu try to get PIP and spend the money you get on a cleaner/ tidying up ect. Housework is my problem and making meals. Good luck love 💜
Nice to see someone taking a different approach. Wondering if anyone is looking at this in connection with fibromyalgia as well. Many of us also experience extreme fatigue and exercise intolerance. And yet there are numerous studies that supposedly indicate exercise as a treatment for fibromyalgia. The studies are full of bias and issues with methodology, as well as all being small studies, but that is all ignored, and exercise continues to be pushed as treatment. To address patient pushback they’ve even invented a psychological explanation of “fear avoidance”, basically reverting back to telling us it’s all in our heads. Btw, some of the literature applies that to CFS as well. It’s extremely frustrating and disheartening. But your approach of testing for an underlying physical cause of exercise intolerance offers hope. I’d also like to see the rest of the medical community embrace the idea of integrative medicine. There are a number of conditions that require patients to see several different specialists who aren’t connected and don’t communicate with each other, even when they work in the same hospital or facility. Not only would integrative medicine lead to quicker diagnosis and more effective treatment, but it could also streamline things for patients in relation to everything from time to travel to cost. Thank you for actually working on behalf of us patients.
Brilliant talk, thanks Dr Systrom and Mona. Your work is fascinating and clearly ground-breaking - I'm a pwme and due to undergo iCPET (hopefully once lockdown lifts!) so am really intrigued to see what my results show and then my response to any potential treatments. Again, thanks Dr Systrom for continuing to do such excellent work in the often ignored field of ME/CFS.
I'm so glad that Solve ME and OMF are working together on this! It's seems so uncommon these days for people to unite for common cause instead of taking from each other everything they can. Thank you to all staff and orgs!
This compilation speaks to the role of vitamin E in hemolysis. "Fluctuation of serum vitamin E (alpha-tocopherol) concentrations during exacerbation and remission phases in patients with chronic fatigue syndrome" "Serum alpha-tocopherol concentrations (mg/g lipids) were significantly (P < 0.001) lower in the patients with chronic fatigue syndrome (2.81 +/- 0.73) than in the control subjects (3.88 +/- 0.65)." Creatinuria is a sign of hemolysis and a lack of vitamin E. "Blood vitamin E content, erythrocyte resistance, and creatinuria as the characteristics for the organism's supply of vitamin E" "Considerable increase in creatinuria and in the creatine/creatinine ratio, suggesting an abnormality of muscle in ME/CFS" "On recovery from the symptoms the creatinuria disappeared." "oxidant-induced red-cell injury, resulting in clinically evident haemolysis in vitamin-E-deficient infants" This is an example of an oxidation induced hemolysis, rescued by vitamin E. "Glucose-6-phosphate dehydrogenase (G6PD) deficiency is the most common genetic defect and enzymopathy worldwide, affecting approximately 400 million people and causing acute hemolysis in persons exposed to prooxidant compounds such as menthol, naphthalene, antimalarial drugs, and fava beans." "alpha-Tocopherol supplementation restores the reduction of erythrocyte glucose-6-phosphate dehydrogenase activity induced by forced training" "Supplementation with alpha-T may protect G6PD activity from reduction"
Could it be that over training, over working, stress, grief, trauma, surgery, etc can cause this? 3 years ago, I had chronic stress which caused adrenal fatigue which led to autoimmune like symptoms. I did research and chose an anti-inflammatory diet and supplemented focusing on getting rid of Inflammation, healing my gut, healing my nervous system, mitochondrial repair and building my nutrients back up. It took 2 months to get rid of my symptoms.
Well idk if anyone has already heard of this (too lazy to research) but I know of someone who recovered from MERS virus who was considered to have post viral fatigue. A doctor had told them they were in the CFS category already actually. This person said they found many connections to fatigue and the nervous system and said that meditating and basically doing stuff to promote the parasympathteic nervous system along with anti-viral foods and anti-inflammatory diet helped them to recover.
All these things have helped me over the last 12 years but Ive not recovered. I find not being able to take care of myself scary, especially as I approach old age and havent been able to accrue ANY of the things needed for old age, like a paid for house, money for care , even friends all got lost one by one (because you cant join in with anything social and you cant organise your own ). With these types on longterm health issues Life becomes nothing but figuring out how to cope with today. You do "one day at a time" and one day you wake up and realise its the future and youre in an even bigger mess than ever...old age on top of this? How? Im concerned Ill be homeless soon . Im not going into a state nursing home to be abused.
The doctors won't test me, despite a bigger picture that includes Graves Disease, Hashimoto's Disease, anemias, fibromyalgia, chronic inflammed nose, PCOS, insomia without reaching REM, surgey, cervical sprains, PTSD and ADHD among many others including blood pressure 90/60. Self research incuded urine tests which showed muscle breakdown proteins post exertion. Self treatments that gave amazing improvements were white wine, ketone capsules, mct oil capsules,coenzyme Q10, chromium and hefty vitamin and mineral supplements and low carbohydrate diet.
Does anyone know of providers &/or facilities that take insurance &/or offer treatments also covered by insurance? I'm fully disabled, home bound & about 80% bed bound, unable to care for myself or basic ADL's e.g. unable to bath/change clothes, eat/prepare food. I worked hard all on my own to improve this much, so I was ecstatic to begin home care again in February, only to now be fighting for palliative care because home care is not flexible enough for severe ME/CFS. I get the impression they agree I need it, but don't know how to get paid. I was also lead to believe I could begin treatment with intravenous saline, now my Dr "isn't sure". I guess the studies I sent weren't enough, he wants treatment protocols that I don't have. No matter how much information I provide, including on severe ME/CFS, I can't make them read it, or prove they don't. That seems to be the case seeing as if they did they'd have a better understanding of ME/CFS, my severity, how disabling & limiting it is including PEM. I get "blamed" when I do all I'm able to from my end. I fought too damn hard for this much improvement to be getting gaslit my health care.I have lost 14 years of my life, 5 very severe completely bedbound, improved for a bit over a year. I know l can improve more with proper care. If anyone has directions for intravenous (IV) saline &/or how I can get palliative care approved please let me know?? Any & all advice will be greatly appreciated...
Terrific presentation - thanks Dr. Systrom and Mona! My questions are: 1) whether patients can develop a "tolerance" to mestinon and 2) whether SFPN is potentially reversible, and if so, whether mestinon can potentially contribute to the reversal process, i.e., via regrowth (or at least halting further damage) of these nerves.
@@krosemccully ok thanks for explaining. Btw I can't watch the video ironically due to me being in a crashed state. Could you explain what SFPN has to do with PEM and CFS?
@@vl2663 Sure. Dr. Systrom runs invasive cardiopulmonary exercise tests weekly at his clinic at Brigham and Women's. About half of his patients have ME/CFS or suspected ME/CFS. A large percentage of these patients have what's called preload failure, which means that the blood vessels don't adequately constrict to provide blood flow to the heart, causing symptoms like shortness of breath, exertional intolerance and PEM. Further, about 40%+ of those patients have small fiber neuropathy, which they often treat with mestinon. The thought process is that the small fiber neuropathy is causing the exercise intolerance, fatigue, PEM and other dysautonomia symptoms. Some patients also (or in the absence of preload failure) have impaired oxygen extraction, which means their muscles are not taking up oxygen from the blood appropriately.
Dr. Systrom is seeing new patients. If you are not in Boston or can't get there, check out some of the non-profit groups that offer lists of ME/CFS "literate" doctors in the US and abroad. If you can't find one in your state or region, you can always reach out via email.
Dr. Systrom is my doctor and I have been through two of these invasive CPET tests. If you have Medicare, it should definitely cover all of the costs and pre lab work that he will want done. The only thing you would have to prepare for his your stay in the Boston are during this time. I bet if you contact his office and let him know you are traveling from out-of-state he will most certainly expedite all of the testing.
Hi I'm a 45yr old male who has lived with these sort of symptoms for most of my life. I continue to exercise (principally squash and running) which i can generally get through with an extreme amount of sweating and laughably low stamina which people often find hard to believe. Often if i push it (by my low standards) I am left gasping desperately for air and have to collapse on the ground to recover (albeit i tend to get my air back relatively quickly). I also get extreme thirst during and after exercise. I crave extremely cold and sugary drinks. Its rather embarrassing as i have no way to explain it to anyone, most of whom seem to struggle to believe that despite daily exercise I never seem to increase my stamina. I probably appear to be rather melodramatic (which i am genuinely not). The exercise itself is somewhat painful but when its over i do get an exercise high which is nice but the thing that looms the most debilitating are the crashes i get (particularly when i push exercise too hard). When they hit me I can be out of action for weeks or even months with extreme fatigue and all sort of neurological issues like mind fog, blurred vision and very bad gastrological symptoms like IBS (the list of symptoms is long) . Its really dreadful. Thankfully one component I seem to have avoided is depression. I do get ruminating thoughts and feelings of helplessness contemplating how to over come it but i have never sunk into a really bad mental state. I try to stay analytical and rational as possible. One piece of silver lining i suppose.
@Seychellian Same old stuff you already know. I tell everyone not to let it take your metabolic health. I slowly gained 75lbs and the pre-diabetes etc. that comes along with it. That exacerbated my symptoms, but I eventually got it all under control with a low carb diet. Not a cure, but the diet pulled me from the edge of a spiral I was about to fall into. Good luck.
Have you got exercise hypertension? All you need to do is measure your blood pressure whilst walking or on a treadmill. It should go up a bit but not massively. For interpretation you'd have to get specialist advice. It's not a 'thing' in medical circles.
Mine started with an advanced invasive (super rare) head & neck tumor in my skullbase. I know I had radiation on my brainstem as well. Since, I've had a lot of weird cns symptoms. & new sensitivities medications and chemicals. I have a very delayed sweat response. And delayed response to temperature. And it has made me very sick in the past before I figured out what was hapening. Lots of vagal nerve issues. I noticed Mona's nerve biopsy showed decreased sweating but can possibly be attributed to sparse sweat glands. I never had a sweating issue until this. I've been checked for everything with only a moderate ana positivity being found. No one can explain it. So far.
Ive been taking one 12 hr Sudafed (kind you sign out for) per day to keep my blood pressure up. I take no other bp meds. If i know ill be exerting myself, flying, or outdoors in heat then i use Liquid Iv which is avail on Amazon. I try to not consume alot of sugar. I began having diagnosed CFS after having a csection for my first child at age 29. I have migraines and have to use imitrex for them. I do strength training 2x a week w a trainer (to keep from hurting self). I work 3 days a week as a flight attd and am major fatigued from flying but have come up w the above to mitigate my fatigue. I also use 300mg benfothiamine per day (B1).
I wonder how many of these thousands of Covid Long-haul patients we are hearing of, are in fact suffering endothelia disfunction, due to an autoimmune response?
I think it's PTSD, shock, emotional trauma, and hormonal. Mine is coupled with hashimotos, depression, night sweats and non epileptic seizures. I had glandular fever age 13. I get gradually worse until I am useless. Brought on by stress.which I don't tolerate as well now that I am older.
i had ptsd, glandular fever and a nervous breakdown all around the same time so it is hard to know which was the original problem, but i think it was stress that wrecked my immune system, followed by glandular fever followed by chronic fatigue.
Thank you to Dr. Systrom’s videos, I was able to diagnose myself!! I live in Montreal, Canada and not many physicians know about this. How do I go about finding the proper treatment? I was only prescribed thigh high compression stockings. I have ME/CFS & POTS Thank you.
Do some research: WorkWell Foundation, Dr. Sara Myhill, Dr. Nancy Klimas at Nova University, Dr. Bateman in Salt Lake City and many others. Research mitochondrial cocktail.... find a functional medicine doctor.
There is no treatment. Nothing works except Ivabradine which will fix POTS within an hour. Fixing your POTS might help your ME, but it could take years. Sorry to be so pessimistic, but after a few years you will realise that I am correct. NOTHING WORKS!
Dear Irene I am interested in this terrible illness.I live in Athens and my daughter suffers from ME/ CFS and lives alone in Paris.Wee visited several hospitals in Paris but it is a rather disappointing experience.I found this video most interesting.Could you please give me your mail so that my daughter,36,working previously in theater could communicate with you?I think that in anada there is more research on this matter.Thank you in advance Σας ευχαριστώ.This is my mail,vkepetzi@gmail.com
I have this disease also, I experience long bouts of lung pain. I hate not being able to exercise and no one truly understands. They think working out will make you feel better. I feel like I’m waisting away. How do you spell the name of this drug?
Yes that was my original diagnosis CFIDS and I did have a diseased gallbladder removed b4 I became sick with cfs/fibro after heppatitis A stayed in my blood for app a year! Things are making more sense to me with this disease thank you
Unbelievable that in all their work they didn't check for basic vitamin deficiencies, just what med they could kind of, sort of treat with. Medicine has forgotten the doctors that came before them. Sad!
@@meganklune3119 First, God is spelled with a capital "G" unless you're calling Satan to your rescue, so start there. Clearly you have high anxiety, I can tell by the three exclamation points you've used. This is in part no doubt why you suffer from CFS. Big Medicine hasn't helped you yet, you've been going to them for years, yet you're yelling at me-? Here's what seems to help... do everything in your power daily to bring your stress down, read upliftung scriptures daily, sit comfortably in the sun everyday for at least 5 mins even when you don't feel like it, try to exercise at a gym even when you don't feel like it (I know it sucks but if you can go to the grocery store, you can get on a treadmill for 20 mins, or other), fix your gut, take probiotics & prebiotics (not junk filled Walmart brands, Now Foods has some good ones). Take cranberry juice daily to remove uric acid in your joints and organs, get a vitamin IV infusion from a "Naturopath", it really helps and if you're on Big Pharma drugs & working with Big Pharma doctors do everything you can with that Naturopath to get off as many of those Big Pharma drugs as you can safely - that poisoning is what got us all here.
Megan you do the best U can and hold on ok I've had CFIDS / fibro for 30 years now and still am overwhelmed by this everyday! Get as much info as U can and pace your life it's only thing I've found to help and I mean it only helps not ever a day without feeling Fluish pain fatigue and many other symptoms that are hard to deal with your not alone in this and maybe soon a cure will come hold on
Pyridostigmine Bromide was I think tried in the UK many years ago for ME/CFS. I never heard anymore about it since then. It was a small trial they were going to do if I remember. You are all just feeling about in the dark. Proper research needs to be done to find out the causative pathophysiology of ME. Meirleir has already done all these treadmill exercise tests too I believe. I haven't heard anything here in the UK about this being the thing to cure ME. Not excited sorry.
Chronic fatigue : difficult to find something. The radiation of microwaves (magnetron)oven creates tension in the muscles.That causes pain and also bad working of the guts: food is absorbed badly,so you have to little vitamins in the body. Also bad feeling in throat and tension in the rest of the body. Tension in the muscles is also bad sleeping.
now the cause of Chronic Fatigue Syndrome is found: radiation of microwaveoven.(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 2 weeks without microwaves health becomes better.
The interesting question is whether these phenomenon are second (or nth) order effects of some other underlying pathology. Clearly the human body is a set of very complex biochemical / mechanical systems that interact in subtle ways. I can only hope that research results like this will get more physicians to appreciate the limits of current medical knowledge and make them more likely to accept that patients complaining of confusing sets of symptoms might actually be suffering from physiological illnesses as opposed to psychological problems. Just because current widely available medical technology does not detect abnormalities do not mean abnormalities do not exist.
I’ve been living with this a longtime and it has robbed me of all joy . You literally can’t do much at all . On a good day you may be able to do some normal things , but this may be followed five days of exhaustion
Cannabis reset my system after 20 years bed bound cfs
My husband doesn't understand it and refuses to help me with house work. I get he works during the day and I feel bad for not being able to do more but he's not supportive . So everything keeps building and its getting more and more of a mess in the house, it's extremely overwhelming but I'm the only one that's going to do it. It's very frustrating and depressing. It makes you feel completely alone.
@@MichelleLee-bg2bu I recently decided to give in to my rheumatologist and try a biologic medicine for rheumatory arthritis. I still have some pain , but MUCH less fatigue. These medicines can have serious side effects but I was desperate. It has definitely changed the fatigue level.
@@LaraCroft2169 unfortunately I'm very sensitive to alot of medications, I usually always get adverse side effects so I can't take a whole lot. Alot of it is because since I've been depressed and because of the fatigue I've been sitting and lay around alot and it's totally messed up my posture, where all my muscles are in knots and pulled forward and down if that makes sense. So I'm trying to correct my posture but I'm at the beginning of it. It's painful and very frustrating. I'm at the beginning of all of this actually because my doctor just figured out that it's fibromyalgia. I'll probably have to go back to the rheumatologist again. I was positive for a non specific autoimmune disorder.
@@MichelleLee-bg2bu try to get PIP and spend the money you get on a cleaner/ tidying up ect. Housework is my problem and making meals. Good luck love 💜
Nice to see someone taking a different approach. Wondering if anyone is looking at this in connection with fibromyalgia as well. Many of us also experience extreme fatigue and exercise intolerance. And yet there are numerous studies that supposedly indicate exercise as a treatment for fibromyalgia. The studies are full of bias and issues with methodology, as well as all being small studies, but that is all ignored, and exercise continues to be pushed as treatment. To address patient pushback they’ve even invented a psychological explanation of “fear avoidance”, basically reverting back to telling us it’s all in our heads. Btw, some of the literature applies that to CFS as well. It’s extremely frustrating and disheartening. But your approach of testing for an underlying physical cause of exercise intolerance offers hope. I’d also like to see the rest of the medical community embrace the idea of integrative medicine. There are a number of conditions that require patients to see several different specialists who aren’t connected and don’t communicate with each other, even when they work in the same hospital or facility. Not only would integrative medicine lead to quicker diagnosis and more effective treatment, but it could also streamline things for patients in relation to everything from time to travel to cost. Thank you for actually working on behalf of us patients.
Brilliant talk, thanks Dr Systrom and Mona. Your work is fascinating and clearly ground-breaking - I'm a pwme and due to undergo iCPET (hopefully once lockdown lifts!) so am really intrigued to see what my results show and then my response to any potential treatments. Again, thanks Dr Systrom for continuing to do such excellent work in the often ignored field of ME/CFS.
I had signed up for a non-invasive CPET, that does it 2 days in a row. I wonder if the invasive one would be better.
Thank you guys so much for researching this and taking it seriously.
Thank you for this approach. Very clarifying and thorough.
Really looking forward to ongoing progress.
I'm so glad that Solve ME and OMF are working together on this! It's seems so uncommon these days for people to unite for common cause instead of taking from each other everything they can. Thank you to all staff and orgs!
This compilation speaks to the role of vitamin E in hemolysis.
"Fluctuation of serum vitamin E (alpha-tocopherol) concentrations during exacerbation and remission phases in patients with chronic fatigue syndrome"
"Serum alpha-tocopherol concentrations (mg/g lipids) were significantly (P < 0.001) lower in the patients with chronic fatigue syndrome (2.81 +/- 0.73) than in the control subjects (3.88 +/- 0.65)."
Creatinuria is a sign of hemolysis and a lack of vitamin E.
"Blood vitamin E content, erythrocyte resistance, and creatinuria as the characteristics for the organism's supply of vitamin E"
"Considerable increase in creatinuria and in the creatine/creatinine ratio, suggesting an abnormality of muscle in ME/CFS"
"On recovery from the symptoms the creatinuria disappeared."
"oxidant-induced red-cell injury, resulting in clinically evident haemolysis in vitamin-E-deficient infants"
This is an example of an oxidation induced hemolysis, rescued by vitamin E.
"Glucose-6-phosphate dehydrogenase (G6PD) deficiency is the most common genetic defect and enzymopathy worldwide, affecting approximately 400 million people and causing acute hemolysis in persons exposed to prooxidant compounds such as menthol, naphthalene, antimalarial drugs, and fava beans."
"alpha-Tocopherol supplementation restores the reduction of erythrocyte glucose-6-phosphate dehydrogenase activity induced by forced training"
"Supplementation with alpha-T may protect G6PD activity from reduction"
Could it be that over training, over working, stress, grief, trauma, surgery, etc can cause this? 3 years ago, I had chronic stress which caused adrenal fatigue which led to autoimmune like symptoms. I did research and chose an anti-inflammatory diet and supplemented focusing on getting rid of Inflammation, healing my gut, healing my nervous system, mitochondrial repair and building my nutrients back up. It took 2 months to get rid of my symptoms.
I’m so glad I found this video!
Couldn’t the heart valve issue be contributed to having hEDS?
Well idk if anyone has already heard of this (too lazy to research) but I know of someone who recovered from MERS virus who was considered to have post viral fatigue. A doctor had told them they were in the CFS category already actually. This person said they found many connections to fatigue and the nervous system and said that meditating and basically doing stuff to promote the parasympathteic nervous system along with anti-viral foods and anti-inflammatory diet helped them to recover.
All these things have helped me over the last 12 years but Ive not recovered. I find not being able to take care of myself scary, especially as I approach old age and havent been able to accrue ANY of the things needed for old age, like a paid for house, money for care , even friends all got lost one by one (because you cant join in with anything social and you cant organise your own ). With these types on longterm health issues Life becomes nothing but figuring out how to cope with today. You do "one day at a time" and one day you wake up and realise its the future and youre in an even bigger mess than ever...old age on top of this? How? Im concerned Ill be homeless soon . Im not going into a state nursing home to be abused.
@@satsumamoonhow are you.noe
Thank you for pursuing this research.
The doctors won't test me, despite a bigger picture that includes Graves Disease, Hashimoto's Disease, anemias, fibromyalgia, chronic inflammed nose, PCOS, insomia without reaching REM, surgey, cervical sprains, PTSD and ADHD among many others including blood pressure 90/60. Self research incuded urine tests which showed muscle breakdown proteins post exertion. Self treatments that gave amazing improvements were white wine, ketone capsules, mct oil capsules,coenzyme Q10, chromium and hefty vitamin and mineral supplements and low carbohydrate diet.
Thanks for the tips.
Does anyone know of providers &/or facilities that take insurance &/or offer treatments also covered by insurance?
I'm fully disabled, home bound & about 80% bed bound, unable to care for myself or basic ADL's e.g. unable to bath/change clothes, eat/prepare food. I worked hard all on my own to improve this much, so I was ecstatic to begin home care again in February, only to now be fighting for palliative care because home care is not flexible enough for severe ME/CFS. I get the impression they agree I need it, but don't know how to get paid. I was also lead to believe I could begin treatment with intravenous saline, now my Dr "isn't sure". I guess the studies I sent weren't enough, he wants treatment protocols that I don't have. No matter how much information I provide, including on severe ME/CFS, I can't make them read it, or prove they don't. That seems to be the case seeing as if they did they'd have a better understanding of ME/CFS, my severity, how disabling & limiting it is including PEM. I get "blamed" when I do all I'm able to from my end. I fought too damn hard for this much improvement to be getting gaslit my health care.I have lost 14 years of my life, 5 very severe completely bedbound, improved for a bit over a year. I know l can improve more with proper care.
If anyone has directions for intravenous (IV) saline &/or how I can get palliative care approved please let me know??
Any & all advice will be greatly appreciated...
Terrific presentation - thanks Dr. Systrom and Mona! My questions are: 1) whether patients can develop a "tolerance" to mestinon and 2) whether SFPN is potentially reversible, and if so, whether mestinon can potentially contribute to the reversal process, i.e., via regrowth (or at least halting further damage) of these nerves.
Hi what does SPFN mean?
@@vl2663 small fiber polyneuropathy
it's SFPN not SPFN
@@krosemccully ok thanks for explaining. Btw I can't watch the video ironically due to me being in a crashed state. Could you explain what SFPN has to do with PEM and CFS?
@@vl2663 Sure. Dr. Systrom runs invasive cardiopulmonary exercise tests weekly at his clinic at Brigham and Women's. About half of his patients have ME/CFS or suspected ME/CFS. A large percentage of these patients have what's called preload failure, which means that the blood vessels don't adequately constrict to provide blood flow to the heart, causing symptoms like shortness of breath, exertional intolerance and PEM. Further, about 40%+ of those patients have small fiber neuropathy, which they often treat with mestinon. The thought process is that the small fiber neuropathy is causing the exercise intolerance, fatigue, PEM and other dysautonomia symptoms. Some patients also (or in the absence of preload failure) have impaired oxygen extraction, which means their muscles are not taking up oxygen from the blood appropriately.
Does anyone know of providers &/or facilities that take insurance &/or offer treatments also covered by insurance?
How does one see this dr and get these workups and a diagnosis? Is this research only. Is it private pay. All I have is medicare.
Dr. Systrom is seeing new patients. If you are not in Boston or can't get there, check out some of the non-profit groups that offer lists of ME/CFS "literate" doctors in the US and abroad. If you can't find one in your state or region, you can always reach out via email.
Dr. Systrom is my doctor and I have been through two of these invasive CPET tests. If you have Medicare, it should definitely cover all of the costs and pre lab work that he will want done. The only thing you would have to prepare for his your stay in the Boston are during this time. I bet if you contact his office and let him know you are traveling from out-of-state he will most certainly expedite all of the testing.
Hi I'm a 45yr old male who has lived with these sort of symptoms for most of my life. I continue to exercise (principally squash and running) which i can generally get through with an extreme amount of sweating and laughably low stamina which people often find hard to believe. Often if i push it (by my low standards) I am left gasping desperately for air and have to collapse on the ground to recover (albeit i tend to get my air back relatively quickly). I also get extreme thirst during and after exercise. I crave extremely cold and sugary drinks. Its rather embarrassing as i have no way to explain it to anyone, most of whom seem to struggle to believe that despite daily exercise I never seem to increase my stamina. I probably appear to be rather melodramatic (which i am genuinely not). The exercise itself is somewhat painful but when its over i do get an exercise high which is nice but the thing that looms the most debilitating are the crashes i get (particularly when i push exercise too hard). When they hit me I can be out of action for weeks or even months with extreme fatigue and all sort of neurological issues like mind fog, blurred vision and very bad gastrological symptoms like IBS (the list of symptoms is long) . Its really dreadful. Thankfully one component I seem to have avoided is depression. I do get ruminating thoughts and feelings of helplessness contemplating how to over come it but i have never sunk into a really bad mental state. I try to stay analytical and rational as possible. One piece of silver lining i suppose.
Ditto!
@@theantiqueactionfigure Any tips on how to minimise some of these issues?
@Seychellian Same old stuff you already know. I tell everyone not to let it take your metabolic health. I slowly gained 75lbs and the pre-diabetes etc. that comes along with it. That exacerbated my symptoms, but I eventually got it all under control with a low carb diet. Not a cure, but the diet pulled me from the edge of a spiral I was about to fall into. Good luck.
Have you got exercise hypertension? All you need to do is measure your blood pressure whilst walking or on a treadmill. It should go up a bit but not massively. For interpretation you'd have to get specialist advice. It's not a 'thing' in medical circles.
Thank you for your work. :-) ❤️
Mine started with an advanced invasive (super rare) head & neck tumor in my skullbase. I know I had radiation on my brainstem as well. Since, I've had a lot of weird cns symptoms. & new sensitivities medications and chemicals. I have a very delayed sweat response. And delayed response to temperature. And it has made me very sick in the past before I figured out what was hapening. Lots of vagal nerve issues. I noticed Mona's nerve biopsy showed decreased sweating but can possibly be attributed to sparse sweat glands. I never had a sweating issue until this. I've been checked for everything with only a moderate ana positivity being found. No one can explain it. So far.
Ive been taking one 12 hr Sudafed (kind you sign out for) per day to keep my blood pressure up. I take no other bp meds. If i know ill be exerting myself, flying, or outdoors in heat then i use Liquid Iv which is avail on Amazon. I try to not consume alot of sugar. I began having diagnosed CFS after having a csection for my first child at age 29. I have migraines and have to use imitrex for them. I do strength training 2x a week w a trainer (to keep from hurting self). I work 3 days a week as a flight attd and am major fatigued from flying but have come up w the above to mitigate my fatigue. I also use 300mg benfothiamine per day (B1).
I wonder how many of these thousands of Covid Long-haul patients we are hearing of, are in fact suffering endothelia disfunction, due to an autoimmune response?
I think it's PTSD, shock, emotional trauma, and hormonal. Mine is coupled with hashimotos, depression, night sweats and non epileptic seizures. I had glandular fever age 13. I get gradually worse until I am useless. Brought on by stress.which I don't tolerate as well now that I am older.
i had ptsd, glandular fever and a nervous breakdown all around the same time so it is hard to know which was the original problem, but i think it was stress that wrecked my immune system, followed by glandular fever followed by chronic fatigue.
Looking for a doctor in Mesa Arizona. My current doctor is leaving the state
Thank you to Dr. Systrom’s videos, I was able to diagnose myself!! I live in Montreal, Canada and not many physicians know about this. How do I go about finding the proper treatment? I was only prescribed thigh high compression stockings. I have ME/CFS & POTS
Thank you.
Do some research: WorkWell Foundation, Dr. Sara Myhill, Dr. Nancy Klimas at Nova University, Dr. Bateman in Salt Lake City and many others. Research mitochondrial cocktail.... find a functional medicine doctor.
There is no treatment. Nothing works except Ivabradine which will fix POTS within an hour. Fixing your POTS might help your ME, but it could take years. Sorry to be so pessimistic, but after a few years you will realise that I am correct. NOTHING WORKS!
Dear Irene I am interested in this terrible illness.I live in Athens and my daughter suffers from ME/ CFS and lives alone in Paris.Wee visited several hospitals in Paris but it is a rather disappointing experience.I found this video most interesting.Could you please give me your mail so that my daughter,36,working previously in theater could communicate with you?I think that in anada there is more research on this matter.Thank you in advance
Σας ευχαριστώ.This is my mail,vkepetzi@gmail.com
Is this the same as POTS?
I have this disease also, I experience long bouts of lung pain. I hate not being able to exercise and no one truly understands. They think working out will make you feel better. I feel like I’m waisting away. How do you spell the name of this drug?
My boyfriend loves to point out how my lifestyle is what causes this disease. He cant grasp that its the other way around for some reason.
gallbladder disease is common in those with CFIDS/ME
What is ID in CFIDS?
Max Nits, during the controversy over naming the condition in the 1990s many used that acronym, for Chronic Immune Deficiency Syndrome
Yes that was my original diagnosis CFIDS and I did have a diseased gallbladder removed b4 I became sick with cfs/fibro after heppatitis A stayed in my blood for app a year! Things are making more sense to me with this disease thank you
I think I began getting sick after multiple tick bits living in northwest Arkansas and then a huge flare from interstitial cystitis. Possibl
fascinating science
This sounds exactly like me! Except that I have POTS. I am asking my cardiologist about Mestinon
Watch out it can damage your eyes . Read up on it
giving up hope over here
Unbelievable that in all their work they didn't check for basic vitamin deficiencies, just what med they could kind of, sort of treat with. Medicine has forgotten the doctors that came before them. Sad!
Oh god .....you clearly do not have CFS ?
We have all been tested for VITAMIN DEFICIENCIES and everything else !!!!
@@meganklune3119 First, God is spelled with a capital "G" unless you're calling Satan to your rescue, so start there. Clearly you have high anxiety, I can tell by the three exclamation points you've used. This is in part no doubt why you suffer from CFS. Big Medicine hasn't helped you yet, you've been going to them for years, yet you're yelling at me-? Here's what seems to help... do everything in your power daily to bring your stress down, read upliftung scriptures daily, sit comfortably in the sun everyday for at least 5 mins even when you don't feel like it, try to exercise at a gym even when you don't feel like it (I know it sucks but if you can go to the grocery store, you can get on a treadmill for 20 mins, or other), fix your gut, take probiotics & prebiotics (not junk filled Walmart brands, Now Foods has some good ones). Take cranberry juice daily to remove uric acid in your joints and organs, get a vitamin IV infusion from a "Naturopath", it really helps and if you're on Big Pharma drugs & working with Big Pharma doctors do everything you can with that Naturopath to get off as many of those Big Pharma drugs as you can safely - that poisoning is what got us all here.
Megan you do the best U can and hold on ok I've had CFIDS / fibro for 30 years now and still am overwhelmed by this everyday! Get as much info as U can and pace your life it's only thing I've found to help and I mean it only helps not ever a day without feeling Fluish pain fatigue and many other symptoms that are hard to deal with your not alone in this and maybe soon a cure will come hold on
of course they do basic blood tests fs
Most are hypermobile
Pyridostigmine Bromide was I think tried in the UK many years ago for ME/CFS. I never heard anymore about it since then. It was a small trial they were going to do if I remember. You are all just feeling about in the dark. Proper research needs to be done to find out the causative pathophysiology of ME. Meirleir has already done all these treadmill exercise tests too I believe. I haven't heard anything here in the UK about this being the thing to cure ME. Not excited sorry.
Hear the cure here: www.TotalLifeEnregyPlan.com
So, if person has lot of resources ( money) there is a hope for getting better...😅😂😂😂
Chronic fatigue : difficult to find something. The radiation of microwaves (magnetron)oven creates tension in the muscles.That causes pain and also bad working of the guts: food is absorbed badly,so you have to little vitamins in the body. Also bad feeling in throat and tension in the rest of the body. Tension in the muscles is also bad sleeping.
now the cause of Chronic Fatigue Syndrome is found: radiation of microwaveoven.(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 2 weeks without microwaves health becomes better.
I don’t have or use a microwave. My onset was after a virus.
@@dressformechallenge this guy is a troll. He commented the same thing on a covid long haulers video
You are a jerk.
How do i get help? Could you Dm me on fb messenger?