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

Jos Roeffaers
Sarah Parrott
Jose Miguel Fons
A Jansen
Joni Elliott
Annemie Ceulemans
Robert Froyen
Nicole Weber
Kelly Merriman
Sally Richardson
Netta Wilford
Yamila Sardinas
Carrie Patten
lieve Dewinter
Hilde Devos
joost dufait
Monique Drost
vanpee Evelyne
Malvine Van Looy
Ramses Creammilicious
Liz Blackadder
Mary Ellen "Ellie" Strand, RN, NP (disabled)
Katrien Devriesere
Martine Debrouwere
Anita Schroons
Nancy Fons
tine vervaet
Luc Delaere
1,000 signatures

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Showing 644 reactions

  • Jos Roeffaers
    signed via 2016-02-13 18:12:17 -0500
  • Sarah Parrott
    signed 2016-02-13 18:09:37 -0500
  • Jose Miguel Fons
    signed 2016-02-13 17:58:52 -0500
    Jose Miguel Fons
  • A Jansen
    signed via 2016-02-13 17:55:19 -0500
  • Joni Elliott
    signed 2016-02-13 16:47:58 -0500
    NIH/CDC: Stop the CFS Study Using Reeves Definition & Cancel the Study’s Presentation at the Feb. 16th CDC Grand Round
  • Annemie Ceulemans
    signed via 2016-02-13 16:39:51 -0500
  • Robert Froyen
    signed via 2016-02-13 16:34:36 -0500
  • Nicole Weber
    signed via 2016-02-13 16:20:02 -0500
  • Kelly Merriman
    signed 2016-02-13 16:04:21 -0500
  • Sally Richardson
    signed 2016-02-13 15:38:37 -0500
    I have ME/CFS and it is debilitating. I am not afraid of exercise – I have gym membership and used to swim 1-2km a time as well as doing ashtanga yoga, using the gym, training with triatheletes, etc. I got a virus and have never been well since. This disease has wrecked my life – not’ just fatigue’ but muscle cramps, brain fog, muscle pains, nerve pain… and I am not getting better. My friend killed herself due to this illness – she was fiercely independent and could not bear not to be ab e to do what she wanted or to be a burden on her family and friends.
  • Netta Wilford
    signed 2016-02-13 15:19:47 -0500
  • Yamila Sardinas
    signed 2016-02-13 15:16:53 -0500
  • Carrie Patten
    signed 2016-02-13 15:13:52 -0500
    NIH and CDC can and SHOULD do a lot better than this. Show us you’re serious for once.
  • lieve Dewinter
    signed via 2016-02-13 14:48:10 -0500
  • Hilde Devos
    signed via 2016-02-13 14:43:49 -0500
  • joost dufait
    signed via 2016-02-13 14:28:57 -0500
  • Monique Drost
    signed via 2016-02-13 14:12:45 -0500
  • vanpee Evelyne
    signed via 2016-02-13 14:07:20 -0500
  • Malvine Van Looy
    signed via 2016-02-13 14:06:01 -0500
  • Ramses Creammilicious
    posted about this on Facebook 2016-02-13 14:06:00 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Ramses Creammilicious
    signed via 2016-02-13 14:05:27 -0500
  • Liz Blackadder
    signed 2016-02-13 13:54:58 -0500
    I developed M.E. after vaccinations and “gastric flu” in December 1986 so am coming up to 30 year anniversary. I know directly from my own and many others’ experiences that chronic/persistent fatigue is not equivalent to M.E.
  • Mary Ellen "Ellie" Strand, RN, NP (disabled)
    signed 2016-02-13 13:46:45 -0500
  • Katrien Devriesere
    signed via 2016-02-13 13:41:42 -0500
    Katrien Devriesere
  • Anita Schroons
    posted about this on Facebook 2016-02-13 12:51:19 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Martine Debrouwere
    signed via 2016-02-13 12:48:44 -0500
  • Anita Schroons
    signed via 2016-02-13 12:47:42 -0500
  • Nancy Fons
    signed 2016-02-13 12:44:55 -0500
  • tine vervaet
    signed via 2016-02-13 12:33:28 -0500
  • Luc Delaere
    signed via 2016-02-13 12:31:11 -0500
    Luc Delaere