The American Academy of Family Physicians

Dear Drs. Lin and Siwek,

I am writing to you about the article posted on the American Family Physician, Oct 15, 2012. (http://www.aafp.org/afp/2012/1015/p741-s1.html)

I am the Executive Director at RMCFA and we are a 501(C)(3) organization that works on behalf for those affected by Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME), and Fibromyalgia (FM).

We were concerned when your article that was brought to our attention because of the inaccuracies and incomplete nature that it conveys to your readers. The depiction of the illness and the recommended treatments does not coincide with the over 4000 published documents and experts understanding of the illness in the CFS community.

CFS is a severe multisystem disease that encompasses far more than “a disorder that causes you to be very tired” Although there many good resources, a publication recently published by the International Association for CFS/ME (IACFS) referred to as the CFS/ME Primer for Clinical Practitioners is an excellent resource for clinicians and gives a more accurate physiological basis for ME/CFS.

The two treatments listed in your article, cognitive behavior therapy (CBT) and graded exercise (GET) are not treatments. They are coping mechanisms and wellness regimens not without controversy in the CFS community. Although CBT can be helpful in the same way as with other chronic illnesses, it is certainly not a cure-all. GET as a regimen is extremely serious. As some believe that it may be helpful to some subsets of CFS patients, it must be administered closely by an expert and many believe that it is extremely detrimental to many subsets of patients (post- exertional malaise) no matter how it is administered. In any case, these are far from inclusive list of the treatments that expert CFS clinicians administer to patients with ME/CFS.

The Department of Health and Human Services' own Chronic Fatigue Syndrome Advisory Committee (CFSAC) recommended in June 2012 that the CDC CFS Toolkit be taken down and the ME/CFS Primer for Clinical Practioners, issued by the International Association for CFS/ME (IACFS/ME) be made widely available.

We ask you to take a close look at the enclosed IACFS primer and reconsider your article for the good of the 1 million estimated patients in the US who have suffered enough because of the continued inaccuracies and lack of proper medical treatment of the medical community regarding this serious and disabling illness.

Respectfully,

Mike Munoz Executive Director Rocky Mountain CFS/ME & FM Association

Rocky Mountain CFS/ME & FM Association 7020 East Girard Avenue, Denver, CO 80224 303.423.7367 www.rmcfa.org