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

Greg Polchow
Ellen Phillips
Laura Glassman
Diane Heggie Boross
Reinhardt Muir
Jeanne Arfanis
Peiying Lin
Pam Esau
Shaun mcDaid
Adam T
Ingeborg Schütze
Linda Neff
Susan K
Libby Boone
Paul Greenwood
Peach Kazen
Christian Brügging
Sandra Thuemmel
Beth Leahy
Andrea Bolland
Lilly Meehan
Elianor Hoffhallen
Clare Dix
Bernd Hauschild
Martina Neukirch
Shari Baker
Greg Crowhurst
Shelley Lauer
1,000 signatures

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Showing 644 reactions

  • Greg Polchow
    signed 2016-02-14 17:52:26 -0500
  • Ellen Phillips
    posted about this on Facebook 2016-02-14 17:50:48 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Ellen Phillips
    signed 2016-02-14 17:50:10 -0500
  • Laura Glassman
    signed 2016-02-14 17:49:31 -0500
  • Diane Heggie Boross
    posted about this on Facebook 2016-02-14 17:48:23 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Diane Heggie Boross
    signed 2016-02-14 17:47:46 -0500
  • Reinhardt Muir
    signed 2016-02-14 17:44:31 -0500
  • Jeanne Arfanis
    signed 2016-02-14 17:38:19 -0500
  • Peiying Lin
    signed 2016-02-14 17:37:10 -0500
  • Pam Esau
    signed 2016-02-14 17:35:17 -0500
    Pam Esau
  • Shaun mcDaid
    signed 2016-02-14 17:34:22 -0500
  • Adam T
    signed 2016-02-14 17:34:18 -0500
  • Ingeborg Schütze
    signed 2016-02-14 17:32:51 -0500
  • Linda Neff
    signed 2016-02-14 17:31:15 -0500
  • Susan K
    signed 2016-02-14 17:27:30 -0500
  • Libby Boone
    signed 2016-02-14 17:26:53 -0500
    Libby Boone
  • Paul Greenwood
    signed 2016-02-14 17:24:38 -0500
  • Peach Kazen
    signed 2016-02-14 17:23:51 -0500
  • Christian Brügging
    signed 2016-02-14 17:15:40 -0500
  • Sandra Thuemmel
    signed 2016-02-14 17:10:05 -0500
  • Beth Leahy
    signed 2016-02-14 17:05:50 -0500
  • Andrea Bolland
    signed 2016-02-14 16:52:20 -0500
  • Lilly Meehan
    signed 2016-02-14 16:42:52 -0500
  • Elianor Hoffhallen
    signed 2016-02-14 16:32:24 -0500
  • Clare Dix
    signed 2016-02-14 16:30:30 -0500
  • Bernd Hauschild
    signed 2016-02-14 16:07:13 -0500
  • Martina Neukirch
    signed 2016-02-14 16:04:32 -0500
    Please do not let that happen
  • Shari Baker
    signed 2016-02-14 16:02:42 -0500
  • Greg Crowhurst
    signed 2016-02-14 15:59:25 -0500
  • Shelley Lauer
    signed 2016-02-14 15:59:07 -0500