NIH/CDC: Stop the CFS Study Using Reeves Definition & Cancel the Study’s Presentation at the Feb. 16th CDC Grand Round

Initiated by

To: Dr. Francis Collins,  Dr. Avindra Nath, and Dr. Brian T. Walitt at NIH and Dr. Tom Frieden and Dr. Elizabeth Unger at CDC

We, the undersigned, call on the National Institutes of Health (NIH) to immediately cancel the proposed NIH intramural clinical study using the 2005 empirical Reeves criteria. In addition, we call on the Centers for Disease Control and Prevention (CDC) to cancel Dr. Avindra Nath’s presentation of the aforementioned study at CDC’s Grand Rounds on February 16, 2016.

The Reeves definition is seriously flawed. It is a definition that was never accepted by mainstream science.  It was in fact rejected by CFSAC in a formal recommendation. The design of this criteria used dubious questionnaires, with no stakeholders input and should have never been used since it was rejected by our experts. In addition, this proposed intramural small scale study is uniquely focused on persistent fatigue following an infection - not on the neuroimmune disease that patients with ME suffer from.

This study contradicts Dr. Collins’ statement to the patient community - “I am hopeful that renewed research focus will lead us toward identifying the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed.”   

Furthermore, the dissemination of this flawed information by Dr. Nath at the CDC’s Grand Rounds on February 16, will deliver misinformation to thousands of clinicians nationwide who will be attending and listening in to the program.  They will falsely assume that ME is just ‘persistent fatigue’ and it will perpetuate their tendency to marginalize, mistreat and neglect ME patients’ true severe symptoms.

As it states in the preface to the 2011 International Consensus Criteria, written by ME experts:  “There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters skepticism, and wastes limited research monies.”

If NIH follows through with this study as is, it will propagate, aggravate and cause immeasurable harm to the estimated one million American ME patients, and will likely also negatively impact the estimated 17 million ME patients worldwide.

In place of this proposed study on idiopathic fatigue, we want NIH to initiate an intramural study whose protocol is pre-approved by ME expert researchers and contains stakeholder input. This study will be of ME patients diagnosed with our expert created ME criteria. This process must be transparent and communicated to the patient community.


The petition’s deadline for signatures is Sunday February 14th, at midnight.  The petition will be sent out on Monday morning February 15th.

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Who's signing

Pamela Martin
Theresa Schuster
Eva Potocki
K Solarski
Indra Hillmer
andrea liepold
Jeff Clagg
Karmen Klisara
Bruno Lackemann
Rosie Cox
Jane S. Millerick
Gina Clagg
Geoffrey Hallmann
Annette Hausburg
Carmen Bedenk
Sirin Gnadeberg
Melanie Koenig
Katherine Reynolds
Julie Parton-Hurd
Natasha Hughes
lorna hughes
Sissy Clark
J Reidel
Bronwen Grody
Jessica Chval
Rita Goldstone
1,000 signatures

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Showing 644 reactions

  • Pamela Martin
    signed 2016-02-10 16:27:30 -0500
  • Theresa Schuster
    signed 2016-02-10 16:25:10 -0500
  • Eva Potocki
    signed 2016-02-10 16:21:27 -0500
  • K Solarski
    signed via 2016-02-10 16:16:42 -0500
  • Indra Hillmer
    signed 2016-02-10 16:15:34 -0500
  • andrea liepold
    signed 2016-02-10 16:11:05 -0500
  • Jeff Clagg
    signed 2016-02-10 15:29:06 -0500
  • Karmen Klisara
    signed 2016-02-10 15:27:00 -0500
  • Waterwoman
    signed via 2016-02-10 15:22:47 -0500
  • Rosie Cox
    posted about this on Facebook 2016-02-10 15:21:15 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Rosie Cox
    posted about this on Facebook 2016-02-10 15:21:07 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Bruno Lackemann
    signed 2016-02-10 15:20:21 -0500
  • Rosie Cox
    signed 2016-02-10 15:19:55 -0500
    Rosie Cox
  • Jane S. Millerick
    signed 2016-02-10 15:16:51 -0500
    Reeves is an absolute cretin. He barely held onto his job after that 1st occasion when the CDC misappropriated funds meant to study ME/ CFS.

    Are you all mad? Why, oh why do you not consider adopting the Canadian Criteria? That would be sane and also scientifically proven.
  • Gina Clagg
    signed 2016-02-10 15:04:14 -0500
  • Geoffrey Hallmann
    signed 2016-02-10 15:00:17 -0500
    It is time to dos rad old habits and move forward with genuine research
  • Annette Hausburg
    signed 2016-02-10 14:59:00 -0500
  • Carmen Bedenk
    signed 2016-02-10 14:52:43 -0500
  • Sirin Gnadeberg
    signed 2016-02-10 14:52:16 -0500
  • Melanie Koenig
    signed 2016-02-10 14:29:37 -0500
  • Katherine Reynolds
    signed 2016-02-10 14:28:46 -0500
    Katherine Reynolds
  • Julie Parton-Hurd
    signed 2016-02-10 14:27:49 -0500
    We need a study that does NOT set out to prove preconceived ideas but rather one where ME/CFS suffers are asked to respond to a wide ranging set of questions which are asked and analysed with an open mind.
  • Natasha Hughes
    signed 2016-02-10 14:24:09 -0500
  • lorna hughes
    signed 2016-02-10 14:15:44 -0500
  • Sissy Clark
    signed 2016-02-10 14:12:42 -0500
  • J Reidel
    signed 2016-02-10 14:07:43 -0500
  • Bronwen Grody
    signed 2016-02-10 14:05:57 -0500
  • Jessica Chval
    posted about this on Facebook 2016-02-10 14:02:54 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Jessica Chval
    signed via 2016-02-10 14:01:58 -0500
    As a sufferer of 5 years, and a friend and relative of other sufferers, this study will harm all of us with its false findings and by including people who merely have fatigue, this will make so many more doctors think that M.E./C.F.S. is no big deal, when on the contrary, specialists on M.E. have said that they would rather have cancer than live with what we live with. To add more falsehoods, and more confusion to the misinformation that already persists in mainstream medicine, and to further marginalize me and other M.E. sufferers will only make that sad reality more true. Please realize how many people this affects, and how many of us have trouble leaving our house or even our beds to speak up for ourselves. We do not want this to happen, it will only make our situation worse and more hopeless. And it will only delay finding a treatment or cure, or even isolating the cause of this disease.
  • Rita Goldstone
    signed 2016-02-10 14:00:32 -0500