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

Jennifer Moore
Sarit Bleiberg
Shlomo Klein
Ceil Rothbart
Beverly Garrett
Dorothy A Chartier
Martha Gandelman
Michael Koolhaas
Kari Merner
Debbie Smith Bradshaw
Donna Fernstrom
Barbara McMullen
Carol Gent
Clifford Smith
sharyn hancock
Eugene (Gene) Baumhover
Robin Funk
Lorraine Kelly
Irene Bienkowski
Barbara Fifield
Cynthia Marek
Tracy Waechter
Sharon Shaw
Wendy Boutilier
Dennise Pagel
Karen Snihur Hinchey
Jolie Solomon
1,000 signatures

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Showing 644 reactions

  • Jennifer Moore
    signed via 2016-02-09 21:13:30 -0500
  • Sarit Bleiberg
    signed 2016-02-09 21:07:47 -0500
  • Shlomo Klein
    signed 2016-02-09 21:00:22 -0500
  • Ceil Rothbart
    signed via 2016-02-09 20:45:48 -0500
  • Beverly Garrett
    posted about this on Facebook 2016-02-09 20:19:56 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Beverly Garrett
    signed 2016-02-09 20:19:39 -0500
  • Dorothy A Chartier
    signed 2016-02-09 20:12:33 -0500
  • Martha Gandelman
    signed 2016-02-09 19:41:31 -0500
  • Michael Koolhaas
    signed 2016-02-09 19:37:43 -0500
  • Kari Merner
    signed 2016-02-09 19:28:43 -0500
  • Debbie Smith Bradshaw
    signed 2016-02-09 19:25:37 -0500
  • Donna Fernstrom
    signed via 2016-02-09 19:22:58 -0500
  • Barbara McMullen
    signed 2016-02-09 19:21:21 -0500
    I commend your vigilance in monitoring this. Can a copy of your newsletter be sent to the Charlie Rose show?
  • Carol Gent
    signed 2016-02-09 19:15:59 -0500
  • Clifford Smith
    signed 2016-02-09 19:11:17 -0500
  • sharyn hancock
    signed 2016-02-09 19:01:50 -0500
  • Eugene (Gene) Baumhover
    signed 2016-02-09 19:01:10 -0500
    Individual with ME/CFS have waited and suffered far too long. Their daily lives are unbearable due to the lack of understanding of ME/CFS and total lack of research on this dread disease.
  • Robin Funk
    signed 2016-02-09 18:55:23 -0500
  • Lorraine Kelly
    signed 2016-02-09 18:40:40 -0500
  • Irene Bienkowski
    posted about this on Facebook 2016-02-09 18:37:40 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Irene Bienkowski
    signed 2016-02-09 18:37:07 -0500
  • Barbara Fifield
    signed 2016-02-09 18:34:43 -0500
    It seemed that Dr. Collins was promising big changes for ME. This is not that! It is just more of the ‘same old’ producing meaningless results that will not move the field forward. We need a well designed study. This is not it! Please, please, please for the sake of us stuck in our beds for years, let’s finally have a study based on consistent criteria (CCC) that actually studies the disease of ME and not just fatigue.
  • Cynthia Marek
    signed 2016-02-09 18:30:57 -0500
  • Tracy Waechter
    signed 2016-02-09 18:22:38 -0500
    Tracy Waechter
  • Sharon Shaw
    signed 2016-02-09 18:12:29 -0500
  • Dennise Pagel
    posted about this on Facebook 2016-02-09 18:03:56 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Wendy Boutilier
    signed 2016-02-09 18:03:42 -0500
    Using the Reeves criteria is taking us back to the Stone Age. Why can’t we all agree to use the ICC 2011. Stop wasting time and research funding on something totally useless
  • Dennise Pagel
    signed 2016-02-09 18:03:24 -0500
  • Karen Snihur Hinchey
    signed 2016-02-09 17:44:28 -0500
    Still waiting for all the M.E. expert researchers (the real ones) to study those patients suffering the debilitating, life altering, serious & very complex, chronic illness M.E. (the real ones) … remember us -- the very ill patients -- as our health deteriorates on a steady downward slope.

    Stop wasting time & money whilst endangering our lives further with bollocks “so called” research based on bollocks “so called” criteria.

    Use CCC & ICC … stuff the Oxford, Fukuda, Reeves & the rest of their lot in the bin along with all the psychobabblists.
  • Jolie Solomon
    signed 2016-02-09 17:40:56 -0500