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

Lara Pereira
Andrea Mentges
Ian O'Rourke
James Campbell
Nika Calcoen
Greta Devits
Miek O
Christian Martens
Gina Bettor
Jonna Svensson
Ema Bilgora Kelly
Cathy van Riel
Etienne De Wit
Kayeren Cannell
Megan Paquet
WIllem Coppens
Richard Allen
Karen Grant
Stuart Pitman
Debbie Thompson
gwen Wilkinson
Janet Godfree
Jamie Shell
Marygrace Coneff
Desirée Adan Lopez
Jennifer Jarvis
David Kelly
Shane Carlson
1,000 signatures

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Showing 644 reactions

  • Lara Pereira
    signed via 2016-02-14 08:52:21 -0500
  • Andrea Mentges
    signed 2016-02-14 08:41:14 -0500
  • Ian O'Rourke
    signed 2016-02-14 07:04:04 -0500
    I’ve suffered with this disease for 10 years and watched you sorry excuses for human beings derail all research in this area over and over by making sure that you’re not actually studying ME/CFS. Then your pathetically biased studies are touted through ignorant media. Anyone involved in this study is completely devoid of character and integrity. Scum.
  • James Campbell
    signed 2016-02-14 06:30:09 -0500
  • Nika Calcoen
    signed via 2016-02-14 06:11:17 -0500
  • Greta Devits
    signed via 2016-02-14 06:04:15 -0500
  • Miek O
    signed via 2016-02-14 05:37:34 -0500
  • Christian Martens
    signed via 2016-02-14 05:09:45 -0500
  • Gina Bettor
    posted about this on Facebook 2016-02-14 04:51:50 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Gina Bettor
    signed 2016-02-14 04:51:30 -0500
  • Jonna Svensson
    signed 2016-02-14 04:48:12 -0500
  • Ema Bilgora Kelly
    signed 2016-02-14 04:22:13 -0500
  • Cathy van Riel
    signed via 2016-02-14 04:00:00 -0500
  • Etienne De Wit
    signed via 2016-02-14 03:56:51 -0500
    When does end that shit?
  • Kayeren Cannell
    signed 2016-02-14 03:55:30 -0500
  • Megan Paquet
    signed via 2016-02-14 03:50:22 -0500
  • WIllem Coppens
    signed via 2016-02-14 03:49:20 -0500
  • Megan Paquet
    posted about this on Facebook 2016-02-14 03:49:06 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Richard Allen
    signed 2016-02-14 03:47:00 -0500
    Richard Allen
  • Karen Grant
    signed 2016-02-14 03:34:46 -0500
  • Stuart Pitman
    signed 2016-02-14 03:18:01 -0500
  • Debbie Thompson
    signed 2016-02-14 03:09:37 -0500
  • gwen Wilkinson
    signed 2016-02-14 02:40:13 -0500
  • Janet Godfree
    signed 2016-02-14 02:37:39 -0500
  • Jamie Shell
    signed 2016-02-14 02:29:18 -0500
  • Marygrace Coneff
    signed 2016-02-14 02:16:05 -0500
  • Desirée Adan Lopez
    signed via 2016-02-14 01:58:03 -0500
    Desirée Adan Lopez
  • Jennifer Jarvis
    signed 2016-02-14 01:53:18 -0500
  • David Kelly
    signed 2016-02-14 01:22:49 -0500
    This is a very serious and debilitating neuroimmune disease. It appears the NIH is trying to just consider it fatigue, which will mean its diagnosis, therefore treatment and status, will be lost and this will cause enormous pain, potential fatalities and credibility for people with the disease.
  • Shane Carlson
    signed 2016-02-14 01:14:15 -0500
    Repeating all of the mistakes of the past will only send the message that no one at the NIH has cared enough to pay any attention to the plight of a million very ill people, and that no at the NIH intends to do anything differently in the future. This level of incompetency is incomprehensible bullshit given the long history of ME patients with the NIH, it borders upon callous indifference. Do something few people have had the courage to do, slow down and take the time to get this right.