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.

Interested in more discussions like this? Go to the Just Want to Talk group.

@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, I lived in Montana and got no help there with getting a ME diagnosis. My PCP and a rheumatogist tried to help, but the neuros were awful. I went to Salt Lake City, Utah (930 miles round trip from where I lived in Montana) had an EMG/NCT that was abnormal, a diagnosis of Myasthenia Gravis ..then neuor in MT disputed diagnosis. I understand there is a clinic in Salt Lake, Bateman Horne Ctr that treats ME. Self-pay of course.Stanford University in California has over a year waiting list and the cost is $8,000.00. I was fortunate to get diagnosed when I moved back to VA, but my neuro is not an ME specialist, does prescribe Mestinon, and some support. My PCP doesn't know how to help me. Most of us cannot afford to go to the ME ctrs or even travel due to this illness. .I'm with you..another known,, accepted diagnosis would give us support and treatments and hope! I wish you could find a dr to help you. Sendign you support and good wishes.

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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

Sita..I understand Mayo is now treating ME. I read about this online. I do a lot of research.

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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 for your response! I had a friend who was seen at Mayo for a second opinion with cancer and she does have Medicare. I will have to check on whether she had to pay out of pocket.

I need an accurate diagnosis before I look at treatment.

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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 Elik!

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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

@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: http://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.

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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.

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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.

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The CDC has dropped Cognitive Behavioral Therapy and Graded Exercise Therapy 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."

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

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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

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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