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

Kathryn Stephens
Bert Horneff
Rise Taylor
Linda Bilyea
Laurie Lelacheur
Janice Williams
Jeri Kurre
martina stark
Chris Evans
Ella Peregrine
John Gabor
Friederike Kahl
Sam King
Madeleine Kvalvik Meese
Marilyn Bloomer
Deborah Sephton
Karl Baty
Trudy Carlson
Joyce Tempel
Susan Kreutzer
Deirdre Tisdale
Simone E
Catherine Klatt
Albert Chang
Ramona Joyce
Ann Cavanagh Kramer
1,000 signatures

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Showing 644 reactions

  • Kathryn Stephens
    signed 2016-02-09 17:35:49 -0500
  • Bert Horneff
    signed 2016-02-09 17:24:56 -0500
  • Rise Taylor
    signed 2016-02-09 17:14:12 -0500
  • Linda Bilyea
    signed via 2016-02-09 17:09:21 -0500
  • Laurie Lelacheur
    signed 2016-02-09 17:07:53 -0500
  • Janice Williams
    signed via 2016-02-09 17:03:59 -0500
  • Jeri Kurre
    signed 2016-02-09 17:01:15 -0500
  • martina stark
    signed via 2016-02-09 17:00:17 -0500
  • Chris Evans
    signed via 2016-02-09 16:54:41 -0500
  • Ella Peregrine
    posted about this on Facebook 2016-02-09 16:52:48 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Ella Peregrine
    @polarbearish tweeted link to this page. 2016-02-09 16:52:45 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Ella Peregrine
    signed via 2016-02-09 16:52:05 -0500
  • John Gabor
    signed 2016-02-09 16:45:34 -0500
  • Friederike Kahl
    signed 2016-02-09 16:44:56 -0500
  • Sam King
    signed 2016-02-09 16:39:23 -0500
    I am in the UK but this study will have global impact and therefore will impact me. Please do research that will help me and the hundres of thousands of others in the world who’s lives are destroyed by this disease
  • Madeleine Kvalvik Meese
    signed 2016-02-09 16:39:10 -0500
  • Sammy Beach
    @OccupyDisabled tweeted link to this page. 2016-02-09 16:38:06 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Sasha
    signed via 2016-02-09 16:35:27 -0500
  • Marilyn Bloomer
    signed 2016-02-09 16:32:39 -0500
  • Deborah Sephton
    signed 2016-02-09 16:30:07 -0500
  • Karl Baty
    signed 2016-02-09 16:20:24 -0500
  • Trudy Carlson
    signed 2016-02-09 16:14:39 -0500
  • Joyce Tempel
    signed 2016-02-09 16:01:20 -0500
  • Susan Kreutzer
    signed 2016-02-09 15:59:46 -0500
  • Deirdre Tisdale
    signed 2016-02-09 15:55:45 -0500
    Deirdre Tisdale
  • Simone E
    signed 2016-02-09 15:49:33 -0500
  • Catherine Klatt
    signed via 2016-02-09 15:49:04 -0500
  • Albert Chang
    signed 2016-02-09 15:47:36 -0500
    This disease is quite insane. General fatigue doesn’t even come close to describing its insanity. Please do not use the Reeves criteria as it does not even come close to categorically representing us.
  • Ramona Joyce
    signed 2016-02-09 15:41:52 -0500
  • Ann Cavanagh Kramer
    signed 2016-02-09 15:39:59 -0500