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

margot billiard
Tineke Lesire
Lieve Schamp
John Vandeput
Chantal Buslot
Kristina Peeters
Marina Vanderslagmolen
Janet Torres
Ann Engelen
Pascal Billiet
Anne Bonynge
johan versieren
Helena Kieckens
ivan istendael
Hadewych P. Verschueren
Geoffrey Williams
Judy Hallegraeff
Veronique Van loy
Veerle Arfeuille
Ryan Bonynge
Chloe Cartwright
Peggy Munson
Robert Joseph
Emma Hindley
Amy Bakewell
Laura Collins
Janet McEwan
Mali Brown
1,000 signatures

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Showing 644 reactions

  • margot billiard
    signed via 2016-02-13 12:31:00 -0500
  • Tineke Lesire
    signed via 2016-02-13 12:29:00 -0500
  • Lieve Schamp
    signed via 2016-02-13 12:25:42 -0500
  • John Vandeput
    signed via 2016-02-13 12:24:35 -0500
  • Chantal Buslot
    signed via 2016-02-13 12:24:08 -0500
  • Kristina Peeters
    signed via 2016-02-13 12:21:27 -0500
  • Marina Vanderslagmolen
    signed via 2016-02-13 12:20:06 -0500
  • Janet Torres
    signed 2016-02-13 12:17:04 -0500
  • Ann Engelen
    signed via 2016-02-13 12:04:36 -0500
  • Pascal Billiet
    posted about this on Facebook 2016-02-13 12:01:12 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Pascal Billiet
    signed via 2016-02-13 12:00:03 -0500
  • Anne Bonynge
    signed via 2016-02-13 11:39:17 -0500
  • johan versieren
    signed via 2016-02-13 11:34:36 -0500
  • Helena Kieckens
    signed via 2016-02-13 11:24:52 -0500
  • ivan istendael
    signed via 2016-02-13 11:16:17 -0500
  • Hadewych P. Verschueren
    signed via 2016-02-13 11:16:11 -0500
  • Geoffrey Williams
    signed 2016-02-13 11:14:20 -0500
  • Judy Hallegraeff
    signed via 2016-02-13 11:10:23 -0500
    Are they crazy! They haven’t learned anything! Cruel people!
  • Veronique Van loy
    signed via 2016-02-13 11:04:30 -0500
  • Veerle Arfeuille
    signed via 2016-02-13 11:04:21 -0500
    Veerle Arfeuille
  • Ryan Bonynge
    signed via 2016-02-13 10:24:02 -0500
  • Chloe Cartwright
    signed via 2016-02-13 10:18:02 -0500
  • Peggy Munson
    signed 2016-02-13 10:16:25 -0500
    Please stop throwing the allocated funding for ME/CFS down the drain by using outdated and inaccurate definitions and thus including idiopathic fatigue (known to afflict 25 percent of the population) and thus creating results that do not apply to ME/CFS patients who have a much more complex disease.
  • Robert Joseph
    signed via 2016-02-13 10:13:30 -0500
  • Emma Hindley
    signed via 2016-02-13 10:05:50 -0500
  • Amy Bakewell
    signed 2016-02-13 10:03:38 -0500
  • Laura Collins
    posted about this on Facebook 2016-02-13 09:55:47 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Laura Collins
    signed 2016-02-13 09:55:10 -0500
  • Janet McEwan
    signed 2016-02-13 09:39:24 -0500
  • Mali Brown
    signed 2016-02-13 05:57:14 -0500