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.

The US CDC has released new clinical care guidelines for ME/CFS. Emphasis is on symptom relief and quality of life improvements. No recommendation for Cognitive Behavioral Therapy or Graded Exercise Therapy.

The CDC makes it absolutely clear that:

– "ME/CFS is a complex, chronic, debilitating disease with systemic effects."
– "ME/CFS is a biological illness, not a psychologic disorder."
– "Standard exercise recommendations for healthy people can be harmful for patients with ME/CFS."
https://www.cdc.gov/me-cfs/healthcare-providers/index.html

Liked by Marianne

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As Mayo continues to reject the ME/CFS clinical recommendations from the US Centers for Disease Control (CDC), I will no longer be participating in Mayo Connect. Patients need evidence-based treatments. Who could argue with that?

David Tuller DrPH at UC Berkeley has written more, and it's worth a read.
http://www.virology.ws/2018/08/20/trial-by-error-more-mayo-please/
Goodbye.

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@webdog

As Mayo continues to reject the ME/CFS clinical recommendations from the US Centers for Disease Control (CDC), I will no longer be participating in Mayo Connect. Patients need evidence-based treatments. Who could argue with that?

David Tuller DrPH at UC Berkeley has written more, and it's worth a read.
http://www.virology.ws/2018/08/20/trial-by-error-more-mayo-please/
Goodbye.

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Thank you for bringing this article to my attention, @webdog. I hope you will stay around long enough to get my reply.

I see that Dr David Tuller is working hard to change the attitudes and approaches of medical professionals around the world, such as the open letter to the editor of the medical journal the Lancet (http://www.virology.ws/2018/07/10/trial-by-error-yet-another-appeal-to-the-lancet-with-more-on-board/) in July 2018.

I see that he also wrote an article on the same blog calling out the CDC (http://www.virology.ws/2015/10/21/trial-by-error-i/( in 2015. And now the CDC has revised its clinical recommendations for ME/CFS. Change is happening.

Webdog:
I have found your participation on Connect to be very informative on ME/CFS. You are a valuable resource and support for people searching for information, who are new to the condition and/or have not done as much research as you. For this reason, I would like to invite you to stay with community and hope you'll continue to inform us.

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@webdog

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

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@weblog thank you for sharing this. My doctor really believes she's helping when she tells me I need aerobic exercise and counseling and I'm sure it's because so many well respected healthcare giants still recommend GET and CBT. She doesn't realize that what I hear her saying is 'think positive thoughts and walk it off'. Believe me, I wish I could.

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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 , Hi Colleen, Up-to-Date also recently stopped recommending GET and CBT.

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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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Dr. Fischer

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I have autoimmune disease, was diagnosed at Mayo with CFS and autoimmune fatigue. They have a good 3-day program but mostly it is focused on fibromyalgia. It seems there are no treatments that i can find that are very effective. I was impressed with the doctor and want to back to see her next visit.

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Mayo Clinic has an excellent Pain Rehab Program. It is a 3 week outpatient program that is staffed by Psychologists, Nurses, PT, and OT's. It focuses on exercise, stress management, counseling. Here's a video about the program:
http://medprofvideos.mayoclinic.org/videos/mayo-clinic-florida-comprehensive-pain-rehabilitation-center
Good Luck!

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