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

Victoria Bell
Silvia Fuchs
Brenda Vreeswijk
david olson
Cynthia Stewart
Shanta Kamath
Tani Klein
Jeremy Lieberman
Russell Logan
Greg Gylten
Rita Griffith
Sue Stevenson
Gena Saunier
Edward Burmeister
Rebecca Brewster
Teresa Tonnemaker
John Leslie Whiting
Sharon Stewart
Robin Thomas
Reginold Creamsmith
katherine Autry
robert christ
Brenda Hankins
Nanette Niece
Anita Claymore
Danyel Goldberg
1,000 signatures

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Showing 644 reactions

  • Victoria Bell
    signed 2016-02-10 01:59:01 -0500
  • Silvia Fuchs
    signed via 2016-02-10 01:44:54 -0500
  • Brenda Vreeswijk
    signed via 2016-02-10 01:10:20 -0500
  • david olson
    signed 2016-02-10 00:50:22 -0500
    Dave Olson just when we thought there was an intelligent and maybe brighter light at the tunnels end, we get this warped idea, which ignores, wholesale, the entire IOM study (which came at very large public expense) and we are heading for more darkness, more of the same..come on, NIH? Is this your attempt to continue to sweep this illness under the carpet, like they have in the UK? Our son has been ill now for 3 years and I am tired of the namby pamby approach being taken towards solving this very real illness..
  • Cynthia Stewart
    signed via 2016-02-10 00:45:39 -0500
  • Shanta Kamath
    signed 2016-02-10 00:43:56 -0500
  • Tani Klein
    signed 2016-02-10 00:31:50 -0500
    Natan Klein Tani Klein signed
  • Jeremy Lieberman
    signed 2016-02-10 00:30:28 -0500
  • Russell Logan
    signed 2016-02-10 00:23:54 -0500
  • Greg Gylten
    signed 2016-02-10 00:22:52 -0500
  • Rita Griffith
    signed via 2016-02-10 00:19:59 -0500
    I support this petition.
  • Sue Stevenson
    signed via 2016-02-10 00:04:25 -0500
  • Gena Saunier
    signed via 2016-02-09 23:36:54 -0500
  • Edward Burmeister
    posted about this on Facebook 2016-02-09 23:05:04 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Edward Burmeister
    signed 2016-02-09 23:04:18 -0500
  • Rebecca Brewster
    signed 2016-02-09 23:03:48 -0500
  • Teresa Tonnemaker
    signed 2016-02-09 22:30:04 -0500
  • John Leslie Whiting
    signed 2016-02-09 22:18:29 -0500
  • Sharon Stewart
    signed 2016-02-09 22:16:29 -0500
    My daughter has ME/CFS and suffers from pain, insomnia, digestive problems, extreme fatigue, muscle wasting, chemical sensitivity… Stop the nonsense and study groups of patients who have ME/CFS.
  • Robin Thomas
    signed 2016-02-09 22:12:21 -0500
  • Reginold Creamsmith
    signed 2016-02-09 22:08:07 -0500
  • katherine Autry
    signed 2016-02-09 21:54:52 -0500
    Stop ignoring published science. Stop ignoring this neuro-immune disease. Stop hiding your past mistakes; choose, instead, to make great strides now to overcome the past. Don’t allow those who were ignored and forgotten 30 years ago to have lived in agony, and died in vain. If you willfully ignore the evidence and the patients, you create an unnecessary liability for this great nation.
  • robert christ
    signed 2016-02-09 21:34:38 -0500
    I should have known this would happen. Just like with the GW Vet’s, and the Vietnam ones before them, they just want us to dry up and blow away.
  • Brenda Hankins
    posted about this on Facebook 2016-02-09 21:34:22 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Brenda Hankins
    @hankins_brenda tweeted link to this page. 2016-02-09 21:34:20 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Brenda Hankins
    signed 2016-02-09 21:32:41 -0500
    No Reeves Criteria.
  • Nanette Niece
    signed via 2016-02-09 21:32:05 -0500
    Nanette D. Niece
  • Anita Claymore
    posted about this on Facebook 2016-02-09 21:27:03 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Anita Claymore
    signed 2016-02-09 21:26:39 -0500
  • Danyel Goldberg
    signed 2016-02-09 21:20:53 -0500
    Danyel Goldberg