Subject Line:  Follow-up from Feb 15, 2016 e-mail re - URGENT  - IMMEDIATE ACTION NEEDED Petition: NIH/CDC: Stop the CFS Study Using Reeves Definition & Cancel the Study’s Presentation at the Feb. 16th CDC Grand Rounds

Dear Dr. Collins:

We have not received your reply for the e-mail below. We would appreciate a response by end of Friday Feb. 26, 2016.

In the time since the original email and petition were sent, Dr. Nath presented at the CDC Grand Rounds. Our petition outlined the reasons why we called for the cancellation of the study and since then new and disturbing information has been uncovered. The choice of Dr. Brian Walitt as lead clinical investigator is an outrage. Dr. Walitt has a biased predisposed opinion of  “syndromes such as fibromyalgia and chronic fatigue”. He states that they are “psychosomatic” and are just a “range of normal”.

Certainly the NIH had knowledge of Dr. Walitt’s beliefs yet, chose to put him in charge. In fact Dr.Walitt’s own research (see link) into chemobrain comparing chemo patients’ neuropsychological symptoms to those of somatoform diseases like fibromylagia and chronic fatigue syndrome, rings close to your statement on the Charlie Rose Show, “by understanding fatigue in CFS, it will lead to understanding fatigue in other illnesses like cancer.”

Dr. Nath himself praised Dr. Walitt during the CDC Ground Rounds, “I would like to particularly thank Dr. Brian Walitt who is the lead clinical investigator of this study at NIH and Doctors’ Unger and Lipkin as members of the executive committee for their valuable advice." In addition, the study design calls for comparing ME/CFS patients to recovered Lyme patients and functional movement disorder patients. Choosing these cohorts, along with the selection of Dr. Walitt as lead clinical investigator, indicates a purposeful objective: to prove a relationship between the disease ME and somatoform disorders and by choosing a second cohort that is more likely to further obfuscate the study by comparing a post-infectious group of Lyme patients, a patient community whose testing approved by the CDC is fraught with controversy and whose patients are prone to developing chronic Lyme infection when they are supposed to remain asymptomatic.

The ME community is justifiably angry by these choices that NIH has made in studying ‘fatigue’ -  as opposed to a study of the neuroimmune disease, ME, with a study design approved by ME expert researchers (who have experience studying ME patients), as well as ME advocates and ME patients. Since our petition went out over a week ago, we feel it is reasonable to expect a reply from your office at end of Friday Feb. 26, 2016.

Regards,

Mary Ann Kindel

Joni Comstock

Tracey Smith

Gabby Klein

Colleen Steckel

Members of the Advisory Group of MEadvocacy

Email CC:  Dr. Avindra Nath at NIH; Dr. Brian T. Walitt at NIH; Dr. Tom Frieden at CDC; Dr. Elizabeth Unger at CDC; Dr. Walter Koroshetz at NIH; Dr. Vicky Holets Whittemore at NIH; Secretary Sylvia Burwell at HHS; Colleen Steckel at MEadvocacy