Subject: Scope of Practice query: Graded Exercise Therapy inappropriate for ME/CFS
Sent: March 5, 2018
To: webmaster @ mbc.ca.gov
xxxx:
I’m writing to you in the hopes the California Medical Board will stop Graded Exercise Therapy (GET) from being recommended by doctors in California as treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
I hope we are in agreement that an inappropriate and potentially harmful treatment with no reliable evidence should not be standard medical care for patients. And yet, that is exactly the case when physicians recommend GET to their ME/CFS patients.
I would like to see this changed. I would like to see GET no longer prescribed by doctors for ME/CFS. I would like to see health care improved for the approximately 150,000 ME/CFS sufferers in the State of California.
GET continues to be widely prescribed to ME/CFS patients. Kaiser Permanente recommends GET. The Mayo Clinic recommends GET. Healthwise recommends GET.
In contrast, due to lack of evidence of effectiveness, every US federal agency that I am aware of has stopped recommending GET as treatment for ME/CFS. The CDC no longer recommends GET. The AHRQ no longer recommends GET. The NIH no longer recommends GET.
The New York State Department of Health has taken a position against GET for ME/CFS, with the NY State Health Commissioner Howard A. Zucker writing in May last year:
"In the past, cognitive behavior therapy (CBT) and a graded exercise therapy (GET) were recommended as treatments. However, these recommendations were based on studies that included patients with other fatiguing conditions. Because of the hallmark intolerance to exertion of ME/CFS, exercise may actually worsen the health of those living with this disease."
Unsurprisingly, ME/CFS patients frequently report significant long term health deterioration following treatment with GET.
As you gather your information about ME/CFS and GET, you will no doubt encounter the PACE Trial. PACE was a large trial in Britain studying the effectiveness of both GET and CBT for Chronic Fatigue Syndrome, and is the primary source of “evidence” for the use of GET in ME/CFS. Although significant claims were made by PACE authors, the long term followup results were null. PACE methodology has been widely rejected internationally.
Regarding PACE and it’s flaws, I would encourage you to read David Tuller’s (UC Berkeley) “Trial By Error” series of essays, which can be found at
http://www.virology.ws/mecfs/
For peer reviewed papers on the shortcomings of PACE, I would point you to the recent special “PACE” edition of the Journal of Health Psychology at
http://journals.sagepub.com/toc/hpqa/22/9
Additionally, if you would like to directly speak with an ME/CFS expert concerning GET and ME/CFS, I would highly encourage you to contact Dr. Ron Davis or Dr. Jose Montoya, both at Stanford University. Or David Tuller at UC Berkeley.
For a good current summary of current medical understanding and treatment recommendations for ME/CFS, I would recommend the Winter Edition of Family Doctor: A Journal of the New York State Academy of Family Physicians at
http://www.nysafp.org/News/Family-Doctor-A-Journal-for-the-NYSAFP
Together, I hope we can stop the inappropriate treatment of Graded Exercise Therapy from being prescribed to ME/CFS patients.
If you have any questions or need any additional information, please don’t hesitate to contact me.
Sincerely,
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