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

Gyan Millar
Marleen Sterckx
Sarah Sowden
Natalie Laraba
Brittany Rieger
Rachael becker Becker
Elizabeth Milo
Arlen Steven Burroughs
Doug Strauss
Kate Blagdon
Karen Robins
Walter Irvine
Sarah Jane
Marilynn David
Donna Gulyas
Rosa Igartúa
Nathalie De vos
Marianne Vileirs
Geery Guldentops
Julie Murray Goodlaxson
Ellen Van der Sypt
Andrea Moeller
Gilbert Kok
caroline lennox
tracy dettman
Vidar Gustad
1,000 signatures

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Showing 644 reactions

  • Gyan Millar
    posted about this on Facebook 2016-02-14 15:51:57 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Gyan Millar
    signed 2016-02-14 15:51:42 -0500
  • Marleen Sterckx
    signed via 2016-02-14 15:47:50 -0500
  • Sarah Sowden
    signed 2016-02-14 15:31:14 -0500
  • Natalie Laraba
    signed 2016-02-14 15:30:09 -0500
  • Brittany Rieger
    signed 2016-02-14 15:28:14 -0500
  • Rachael becker Becker
    signed 2016-02-14 15:25:31 -0500
  • Elizabeth Milo
    signed 2016-02-14 15:22:21 -0500
  • Arlen Steven Burroughs
    signed 2016-02-14 15:18:17 -0500
  • Doug Strauss
    signed 2016-02-14 15:13:37 -0500
  • Kate Blagdon
    signed 2016-02-14 15:10:27 -0500
  • Karen Robins
    signed 2016-02-14 14:59:25 -0500
    People are dying without acceptable medical support due to irresponsible promoting of one symptom whilst ignoring serious immune/neurological aspect of this disease.
  • Walter Irvine
    signed 2016-02-14 14:50:29 -0500
    Walter Irvine
  • Sarah Jane
    signed via 2016-02-14 14:29:09 -0500
  • Marilynn David
    signed 2016-02-14 14:06:24 -0500
  • Donna Gulyas
    posted about this on Facebook 2016-02-14 13:53:17 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Donna Gulyas
    signed 2016-02-14 13:52:44 -0500
  • Rosa Igartúa
    signed via 2016-02-14 13:29:50 -0500
    It’s very important the research to find a solution for ME. The experience of life is to hard.

    Greatest. Rosa
  • Nathalie De vos
    signed via 2016-02-14 13:18:15 -0500
  • Marianne Vileirs
    signed via 2016-02-14 13:02:35 -0500
  • Geery Guldentops
    signed via 2016-02-14 12:42:42 -0500
  • Julie Murray Goodlaxson
    signed 2016-02-14 12:09:54 -0500
  • Ellen Van der Sypt
    posted about this on Facebook 2016-02-14 12:04:28 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Ellen Van der Sypt
    signed via 2016-02-14 11:59:25 -0500
  • Andrea Moeller
    signed 2016-02-14 11:17:00 -0500
  • Gilbert Kok
    signed via 2016-02-14 11:09:45 -0500
  • caroline lennox
    signed 2016-02-14 11:06:16 -0500
  • tracy dettman
    signed 2016-02-14 10:47:55 -0500
    This can save the lives of many!
  • Vidar Gustad
    signed 2016-02-14 08:57:22 -0500
  • Lara Pereira
    posted about this on Facebook 2016-02-14 08:53:05 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition