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

Colleen Steckel
Carol Kline
Toni Panzuto
Jerry Seidel
Sharon Lynn Unsworth
Jere Myrick
Colette Christianson
Christa Varsalone
Renee Weissmann
Tammi Rhoney
H Kiley
Kendra Dayger
Jean Harrison
Kimberley Anne Bradley
Caroline Crichton
Christina Cooper
Natalie Gygi
Bruce Alan Fries
Linda Stirling
Mande Bijelic
Molly Poirier
Elizabeth Howie
John Buettner
1,000 signatures

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Showing 644 reactions

  • Colleen Steckel
    signed 2016-02-10 21:55:56 -0500
  • Carol Kline
    signed 2016-02-10 21:54:06 -0500
  • Toni Panzuto
    signed 2016-02-10 21:49:16 -0500
  • Jerry Seidel
    signed 2016-02-10 21:24:11 -0500
  • Joni Comstock
    posted about this on Facebook 2016-02-10 21:18:28 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition #ME #PWME #ImmuneSuppression
  • Sharon Lynn Unsworth
    posted about this on Facebook 2016-02-10 21:17:24 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Sharon Lynn Unsworth
    signed 2016-02-10 21:16:37 -0500
  • Jere Myrick
    signed 2016-02-10 21:07:34 -0500
  • Colette Christianson
    signed 2016-02-10 21:02:43 -0500
  • Christa Varsalone
    signed 2016-02-10 20:55:58 -0500
  • Renee Weissmann
    signed 2016-02-10 20:25:17 -0500
  • Tammi Rhoney
    posted about this on Facebook 2016-02-10 20:20:59 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Tammi Rhoney
    posted about this on Facebook 2016-02-10 20:20:56 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Tammi Rhoney
    signed 2016-02-10 20:20:37 -0500
  • H Kiley
    signed 2016-02-10 20:09:51 -0500
  • Kendra Dayger
    signed 2016-02-10 19:57:33 -0500
    I am so tired of NIH and CDC ignoring us and giving out incorrect information. It has been years and years of abuse. I guess you can sleep at night, but I wonder why.
  • Jean Harrison
    signed 2016-02-10 19:43:45 -0500
    There are many flaws to this proposed study, not the least of which is ignoring the work of the IOM. The IOM seemed flabbergasted at how many serious, important studies never saw publication in traditionally significant journals. The bias against such publication has been consistent for at least 20 years.
  • Kimberley Anne Bradley
    signed 2016-02-10 19:00:08 -0500
    This illness is very real. It is not a psychological illness. It is physiological and devestating the lives of millions.
  • Caroline Crichton
    signed 2016-02-10 18:57:00 -0500
  • Christina Cooper
    posted about this on Facebook 2016-02-10 18:49:37 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Christina Cooper
    posted about this on Facebook 2016-02-10 18:49:37 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Christina Cooper
    signed 2016-02-10 18:49:09 -0500
    As an RN I was extremely active until I got the flu December 24, 2009 and dropped dead in my tracks with what is clearly ME. It’s time to stop burying ME patients alive under the broad, vague diagnosis of CFS! Use the Canadian criteria to diagnose and study ME patients because we desperately need a cure!! It’s great if you want to study fatigue related to other illnesses, but DO NOT use the funds designated for studying ME/CFS to do so!
  • Natalie Gygi
    signed 2016-02-10 18:48:40 -0500
  • Bruce Alan Fries
    signed 2016-02-10 18:39:57 -0500
  • Linda Stirling
    signed 2016-02-10 18:29:29 -0500
    We need a study that will move knowledge of this disease forward, not one that rehashes old false ideas or confuses the landscape further. Millions of people are counting on this agency to help find real answers. Please, save our lives.
  • Mande Bijelic
    signed 2016-02-10 17:59:31 -0500
  • Molly Poirier
    signed 2016-02-10 17:51:35 -0500
    Someone needs to centralize the knowledge here. Clearly this will do more harm than good…and is NOT what was intended.
  • Elizabeth Howie
    signed via 2016-02-10 17:37:07 -0500
  • John Buettner
    signed 2016-02-10 17:36:47 -0500
    Please use real science. The Canadian Criteria has been fully reviewed by experts and should be adopted now. I’ve been in this living hell for 30 and if you proceed as planned I will die with this miserable disease.
  • A B
    signed 2016-02-10 17:24:42 -0500