Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
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.
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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.
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.
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.
@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.
@colleenyoung , Hi Colleen, Up-to-Date also recently stopped recommending GET and CBT.
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.
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:
What type of dr is this? What location?
@angelupnorth51 – I think this is the link @webdog was trying to share. The site must have moved it after he posted it?
I know this thread goes back a couple of years, but I'd be interested in anyone knowing what information on MF/CFS. After almost three years of chasing down what I have I've been reading a book that talks about MF/CFS. It seems like you could throw a blanket over the symptoms of Lyme disease, Fibromyalgia, and MF/CFS!
In researching MF/CFS this weekend I have found many things that apply to my symptoms! But as I said you can throw a blanket over the three of them.
I'm seeing my PCP the end of the week for my semi-annual physical! He's been very supportive of my condition in helping me deal with certain symptoms and medication, but I still don't have any definitive answers. Just get the run a round when I try to pin him down.
Any help or sources to go to would be greatly appreciated!
From The Land of Enchantment!