Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments

Posted by webdog @webdog, May 13, 2018

I'm curious if anyone has found any treatments that help with ME/CFS.

Currently, I'm housebound and occasionally bedbound, and unable to work. I can leave the house perhaps once a week, but always with "payback" or post-exertional malaise. So I guess that would be moderate ME/CFS. I'm not usually bedbound for long periods like the severe patients.

For the past 2 years, my doctor has prescribed Valtrex + low-dose naltrexone. These treatments definitely help with some symptoms, and I'm very fortunate to have them. My quality of life has improved. However, these treatments seem to do nothing to improve functioning.

Although I've been sick for 40 years (following a viral infection), 5 years ago my health deteriorated dramatically on a (not Mayo) doctor-prescribed treatment plan that included increased exercise and a stimulant. Now, I seem to be unable to get back to even my previous level of poor health.

If anyone has found a treatment that helps with ME/CFS functioning, please do share. Thanks.

@sita

Does anyone here know of a Mayo doctor who can diagnose ME/CFS and/or another auto immune disease?
I don’t even know what type of doctor to look for..
To respond to your inquiry, Phoenix Rising is an online group of individuals dealing with ME/CFS and they keep abreast of the latest research and treatments.
Thanks!

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@sita — in addition to the helpful information that @webdog and @elik have provided, here is a link you may use to request an appointment at Mayo Clinic, if you'd like to be seen: mayocl.in/1mtmR63.

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@elik

I am happy to find this group. After over 6 years of seeking help, I was diagnosed with M.E. by a neurologist. My journey has been long and hard, as have most with this chronic and debility, systemic neurological illness. Was first diagnoised with MS, then not, then Myasthenia Gravis, put on Mestinon, which does help, then not. I have other, complex and puzzling symptoms such as Diplopia, Dysphagia Dysarthia and more. .Am now struggling with severe swallowing and speech issues. Recent appts and testing with Speech Therapist, three ENT drs diagnosed and documented swallowing and speech as severe and progressive. Recent consult with a new neuro: diagnosed with Dystonia, a Neurological movement disorder. She is referring me to NIH for evaluation and testing. I get discouraged and frustrated, then bounce back with new determination. Finding others with similar issues and challenges has bee so helpful, as I felt so alone with all of this before.
Elik

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Elk.. I know what you mean. Drs suggest another test constantly…over and over. When I speak my opinion, they say…Don't you want to know what is wrong with you? They never come back with firm diagnosis. Maybe medical schools are failing the doctors.

Liked by lanipadget1979

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I have a wonderful caring Dr, but she feels puzzeled also. Now three doctors referred me to pain management. Now my primary care says remember, if they cannot give you a shot, they WILL not be giving me any pain med. She said…pain doctors want to leave by their field. Wow..what a joke.

Liked by lanipadget1979

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@sita

Does anyone here know of a Mayo doctor who can diagnose ME/CFS and/or another auto immune disease?
I don’t even know what type of doctor to look for..
To respond to your inquiry, Phoenix Rising is an online group of individuals dealing with ME/CFS and they keep abreast of the latest research and treatments.
Thanks!

Jump to this post

Thanks so much.  I really feel like I need to have a doctor’s name or a type of specialist before I go. I am having B12 deficiency symptoms including nausea, gagging, neurological symptoms like foot tingling, weakness in legs, dizziness, fatigue, vision blurring, paleness, memory issues.I have had three stomach surgeries including small bowel resectioning for adhesions and taken PPIs like Prilosec long term.  I really think absorption is a factor.  I don’t want to waste a Mayo visit, and I don’t know that just a general Mayo doc could diagnose me.Thanks for being so helpful, any thoughts are welcome.

Liked by Lisa Lucier

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I'm actually surprised to find ME/CFS treatment recommendations for Cognitive Behavioral Therapy and Graded Exercise Therapy on the Mayo website. The CDC has dropped these recommendations, and the New York State Department of Health is against them.

This is from the New York State Department of Health website:
https://www.health.ny.gov/diseases/conditions/me-cfs/
"How is ME Treated?

Although cognitive behavior therapy (CBT) and graded exercise therapy (GET) were once recommended to treat patients with ME, these interventions assume that patients are just out of shape (deconditioned) and are based on studies that included patients with other fatiguing conditions. These recommendations have caused more harm than good for people with ME and have been eliminated from the Centers for Disease Control and Prevention (CDC) website."

Perhaps Mayo is having success with CBT/GET. But these treatment recommendations are not in current agreement with US health agencies (CDC, NIH, AHRQ, NAM, etc.). This is not a criticism of Mayo, just a statement of fact, and can be easily verified.

I can't stress enough how extremely careful ME/CFS patients have to be with exercise. It's important to have a doctor who understands this. Yes, you want to be as active as possible without exceeding your energy envelope and worsening symptoms. ME/CFS patients have severe aerobic energy production issues. Contrary to the GET/CBT model, the symptoms of ME/CFS are not caused by deconditioning or a lack of exercise.

It's important to understand that pushing to exercise too much can turn mild ME/CFS patients into moderate or severe/bedbound patients.

Those still not convinced should read a recent letter from exercise experts at the Workwell Foundation and the University of the Pacific: http://www.workwellfoundation.org/wp-content/uploads/2018/05/MECFS-GET-Letter-to-Health-Care-Providers-v4-30-2.pdf

Liked by lanipadget1979

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@sita

Does anyone here know of a Mayo doctor who can diagnose ME/CFS and/or another auto immune disease?
I don’t even know what type of doctor to look for..
To respond to your inquiry, Phoenix Rising is an online group of individuals dealing with ME/CFS and they keep abreast of the latest research and treatments.
Thanks!

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Any doctor should be able to test for and treat B12 deficiency.

As an aside, 3 years ago, I was in a B12+methylfolate ME/CFS study for those with MTHFR gene mutations. I saw no benefit.

The Open Medicine Foundation study is still ongoing. I don't know if they are recruiting, but could be worth looking into.
https://www.omf.ngo/current-studies/

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@sita

Does anyone here know of a Mayo doctor who can diagnose ME/CFS and/or another auto immune disease?
I don’t even know what type of doctor to look for..
To respond to your inquiry, Phoenix Rising is an online group of individuals dealing with ME/CFS and they keep abreast of the latest research and treatments.
Thanks!

Jump to this post

Unfortunately, many people are misdiagnosed with and without B12 deficiencies. In my case, I was supplementing orally prior to being tested, which skewed my results.  Although I have the B12 deficiency symptoms, those same symptoms are also found in ME/CFS. There are also other deficiencies that may cause those symptoms. I personally have been waiting over three weeks for my doctor to put into process a complex nutritional evaluation.  This is, by the way, a Concierge doctor that I pay additionally for, since primary care doctors are so overwhelmed and scarce whereI live.  I don’t have a clear diagnosis and am not sure how or when I will get one. I know that I am not unique in this. I may check into the study that you cited. Thanks very much!

Liked by webdog

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Mayo Clinic Florida has an excellent Pain Rehab program. They treat all types of chronic pain/symptom issues, and have great results. It is a 3 week program that combines CBT, OT, PT and medication tapering. They take insurance and Medicare patients.
You can check out their website here: http://www.mayoclinic.org/departments-centers/pain-rehabilitation-center
Good luck!

Liked by Lisa Lucier

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@canadagal

Mayo Clinic Florida has an excellent Pain Rehab program. They treat all types of chronic pain/symptom issues, and have great results. It is a 3 week program that combines CBT, OT, PT and medication tapering. They take insurance and Medicare patients.
You can check out their website here: http://www.mayoclinic.org/departments-centers/pain-rehabilitation-center
Good luck!

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Note that the CDC no longer recommends CBT for ME/CFS.

Same with NIH, AHRQ, and NY State Dept of Health. If there is a US health agency still recommending CBT for ME/CFS, I'm not aware of it.

Also, a recent ME/CFS clinicians' summit unanimously voted to reject both CBT and GET as "inappropriate and potentially harmful". https://www.medscape.com/viewarticle/893766

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It is true that ME (chronic fatigue syndrome) is a poorly understood condition. And what works for some may not work for others. While some have found that graded exercise makes their symptoms worse, others have found the approach to be helpful. Being offered cognitive behavioral therapy unfortunately can make one feel like their doctor believes their complaints are “all in their head,” which is a terrible feeling and not right. It is so challenging to get family, friends and professionals to take CFS seriously. Having said that talking with a counselor can help each person to discover options to work around some of the limitations that chronic fatigue syndrome imposes and start to get back control.

Many people with chronic fatigue syndrome or fibromyalgia are helped dramatically by Mayo’s Pain Rehabilitation Center and its primary treatment plan includes graded exercise and cognitive behavioral therapy. https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center
@canadagal what helped you the most at the Pain Rehab Center?

This discussion underlines that evidence of what works is still evolving. I appreciate hearing what has worked for each of you. I think the most important part of finding solutions is an open relationship with your care team.

@webdog, what approaches have been helpful for you?

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@colleenyoung

It is true that ME (chronic fatigue syndrome) is a poorly understood condition. And what works for some may not work for others. While some have found that graded exercise makes their symptoms worse, others have found the approach to be helpful. Being offered cognitive behavioral therapy unfortunately can make one feel like their doctor believes their complaints are “all in their head,” which is a terrible feeling and not right. It is so challenging to get family, friends and professionals to take CFS seriously. Having said that talking with a counselor can help each person to discover options to work around some of the limitations that chronic fatigue syndrome imposes and start to get back control.

Many people with chronic fatigue syndrome or fibromyalgia are helped dramatically by Mayo’s Pain Rehabilitation Center and its primary treatment plan includes graded exercise and cognitive behavioral therapy. https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center
@canadagal what helped you the most at the Pain Rehab Center?

This discussion underlines that evidence of what works is still evolving. I appreciate hearing what has worked for each of you. I think the most important part of finding solutions is an open relationship with your care team.

@webdog, what approaches have been helpful for you?

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@colleenyoung An antiviral (Valtrex) and low dose Naltrexone have been helpful in reducing symptoms. I'm very fortunate to have a primary care doctor who was willing to try and support these treatments.

But "pacing", that is not exerting beyond my available energy, has been the most helpful "treatment" of all.

Still, I remain mostly housebound and at times bedbound. While my quality of life has improved, my physical functioning has not.

My health deteriorated significantly 5 years ago on a prescription of a stimulant combined with increased exercise given by doctors who did not understand ME/CFS. I went from mild/moderate ME/CFS to moderate/severe ME/CFS. Even after 5 years, I have not recovered my previous functioning.

I've also had very bad reactions to several psychiatric medications prescribed by doctors who did not recognize neurological symptoms typical of ME/CFS. It's unfortunate how very many years it took to find a doctor who understands ME/CFS and could offer appropriate treatment.

My overall experience interacting with the healthcare system is very well described by the 2015 National Academy of Medicine report, "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness", which writes:

"Diagnosing the disease remains a challenge, and patients often struggle with their illness for years before an identification is made. Some health care providers have been skeptical about the serious physiological — rather than psychological — nature of the illness. Once diagnosed, patients often complain of receiving hostility from their health care provider as well as being subjected to treatment strategies that exacerbate their symptoms."
https://www.ncbi.nlm.nih.gov/books/NBK274235/

Liked by Lisa Lucier, sita

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@colleenyoung

It is true that ME (chronic fatigue syndrome) is a poorly understood condition. And what works for some may not work for others. While some have found that graded exercise makes their symptoms worse, others have found the approach to be helpful. Being offered cognitive behavioral therapy unfortunately can make one feel like their doctor believes their complaints are “all in their head,” which is a terrible feeling and not right. It is so challenging to get family, friends and professionals to take CFS seriously. Having said that talking with a counselor can help each person to discover options to work around some of the limitations that chronic fatigue syndrome imposes and start to get back control.

Many people with chronic fatigue syndrome or fibromyalgia are helped dramatically by Mayo’s Pain Rehabilitation Center and its primary treatment plan includes graded exercise and cognitive behavioral therapy. https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center
@canadagal what helped you the most at the Pain Rehab Center?

This discussion underlines that evidence of what works is still evolving. I appreciate hearing what has worked for each of you. I think the most important part of finding solutions is an open relationship with your care team.

@webdog, what approaches have been helpful for you?

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@webdog, I really appreciate this discussion. My mother suffers from a life-limiting chronic fatigue. In her case, however, we do not believe that it would be classified as ME. Having said that, I’m going to read the above references to get better educated.

Her fatigue is related to myelodysplasia and sjrogren’s. Fatigue is such a common symptom of so many conditions, I don’t find it surprising that it takes a long time to diagnose ME. The part that is harmful is when patient reports of continued and debilitating fatigue are met with skepticism.

It sounds like you have a healthy and helpful relationship with your doctor. Thank goodness. I can’t help but wonder how much you’ve been able to educate other health care professionals about ME? When encountering other providers, have you found a successful way of getting beyond the doubt and misbelief? What might you recommend to others who haven’t yet found an understanding doctor?

Liked by Lisa Lucier, sita

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@colleenyoung

It is true that ME (chronic fatigue syndrome) is a poorly understood condition. And what works for some may not work for others. While some have found that graded exercise makes their symptoms worse, others have found the approach to be helpful. Being offered cognitive behavioral therapy unfortunately can make one feel like their doctor believes their complaints are “all in their head,” which is a terrible feeling and not right. It is so challenging to get family, friends and professionals to take CFS seriously. Having said that talking with a counselor can help each person to discover options to work around some of the limitations that chronic fatigue syndrome imposes and start to get back control.

Many people with chronic fatigue syndrome or fibromyalgia are helped dramatically by Mayo’s Pain Rehabilitation Center and its primary treatment plan includes graded exercise and cognitive behavioral therapy. https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center
@canadagal what helped you the most at the Pain Rehab Center?

This discussion underlines that evidence of what works is still evolving. I appreciate hearing what has worked for each of you. I think the most important part of finding solutions is an open relationship with your care team.

@webdog, what approaches have been helpful for you?

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@colleenyoung Chronic Fatigue Syndrome is quite the unfortunate name, as it implies "fatigue" is the main symptom. Yet fatigue is a symptom of nearly every chronic disease. Not helpful at all. Particularly when for many patients, fatigue isn't the most disabling symptom of a "serious, debilitating, chronic disease that affects multiple body systems, including the nervous system, the immune system, and the body's production of energy."

For now, the US government calls it "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" or just ME/CFS. The New York State Department of Health calls it "Myalgic Encephalomyelitis" or just ME. No US government health agency calls it "Chronic Fatigue Syndrome" anymore. However, in the UK, the term "CFS/ME" is commonly used. No one, except a few clinicians, use the term "Systemic Exertion Intolerance Disease" or SEID, which was a name proposed in 2015 by the Institute of Medicine.

Likely a new name or names will be introduced once we know the etiology of ME/CFS. Much has been written elsewhere about the many names for this disease, how this mess arose and who might be at fault… but I think everyone agrees the numerous names for this disease is an absolute confusing mess.

As you say, I do have a healthy relationship with my doctor. He's all "evidence based", but I've had to convince him to throw some of that out the window. The lack of research over the past 30 years has meant there is little known about ME/CFS and there is no FDA approved treatment. But that doesn't mean patients shouldn't be treated. ( see https://www.medscape.com/viewarticle/893766 ).

What turned my primary care doctor around was the 2015 National Academy of Medicine report, which you can find at these links:
Summary documents: http://nationalacademies.org/hmd/reports/2015/me-cfs.aspx
Full report: https://www.ncbi.nlm.nih.gov/books/NBK274235/

This authoritative report makes it absolutely clear that ME/CFS "is a medical — not a psychiatric or psychological — illness". And that ME/CFS patients are more disabled than patients with other severe disabling chronic diseases, "including type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease."

My personal process for choosing a doctor:
1) Present ME/CFS information from authoritative sources, such as the CDC, National Academy of Medicine, NY State Dept of Health, ME/CFS conferences, NIH, Stanford, etc.
2) After being shown the evidence, if the doctor accepts ME/CFS is a serious biomedical disease and is willing to learn more, keep them.
3) If the doctor maintains ME/CFS is wholly or partly psychological and should be treated with psych or behavioral interventions, get rid of them. Don't bother trying to convince a doctor that won't look at the current scientific evidence or accept government reports.

Convincing doctors that ME/CFS patients should be treated with the same care and understanding as patients with any other serious chronic illness hopefully will become easier sometime this summer, when the CDC releases its "Information for Healthcare Providers". In this document will also be recommended treatment guidelines. GET and CBT will not be listed as recommended treatments.
https://www.cdc.gov/me-cfs/healthcare-providers/index.html
After 30 years of complete neglect, the CDC seems to be slowly, slowly recognizing the severity and prevalence of ME/CFS. It's not just "tired people"; patients suffer horrifically with little medical or social support, and those with severe ME/CFS can and do sometimes die from this disease.

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@colleenyoung

Hi @webdog, thanks for starting this discussion on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). I'd like to bring @jlfisher56 @kellye5 and @plshelpmyfatigue into this discussion. You may also be interested in members talking here:

– Constant Fatigue, 20 year old female https://connect.mayoclinic.org/discussion/constant-fatigue-20-year-old-female/

Fellow member and mentor, @johnbishop has posted this TED talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis. Have you seen it?
What happens when you have a disease doctors can’t diagnose https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

What symptoms does Valtrex + low-dose naltrexone help for you?

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I have CFS and have had for 20 plus years. I had mono, then Epstein Barr virus then tried to go back to work, couldn't had to quit and went into a research program for about a year. Very good because I got testing free but after awhile my mom pulled me to get meds not placebo, etc.. It took about 2 years and I improved. I was able to go back to work. I was always tired and had to watch my warning signs. Then I got diagnosed with MALS had a major surgery and out it came with full force. But it was even more than just fatigue. After four years and 2 other surgeries for Mals, I found out I have Mast Cell Activation Syndrome. It may be worth looking into. The swollen eyes and blistered face is what made me think this. An allergist/immunologist diagnosed me. He is well known for this. It is very new to medical field and not many know about it, but there is so much research out there. Just google it and see if that may sound like you. Hope that helps.

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@sita

Does anyone here know of a Mayo doctor who can diagnose ME/CFS and/or another auto immune disease?
I don’t even know what type of doctor to look for..
To respond to your inquiry, Phoenix Rising is an online group of individuals dealing with ME/CFS and they keep abreast of the latest research and treatments.
Thanks!

Jump to this post

I go to the Mayo in AZ and they don't take Medicare. They take some of it, and the rest is out of pocket. It is not as bad as I thought, but still not good. I had a $10,000 procedure, and I paid a little over $1000 out of pocket. Of course that and everything else adds up, but I just pay a little month to month.. It is your call depending on your care. I saw a GI dr. there and she was horrible so no way going back for that, but a really good cardiologist, so worth it for me. I don't know if they do treat CFS. When I originally asked they said no. I have so many other issues going on now that I never even ask anymore. Need to get some other things resolved that I think will help with the fatigue..

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