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

Lyle Allan
Lynne Gott
yacov jutkowitz
Frank Freier
Louise Zeno
Aeon Zeno
Elizabeth Moncrieff
Craig Woods
Jan van Roijen
Barbara Mayer
Patricia Schmid
Susan Atkins
Susanna Agardy
Siobhan McElwee
Mark Smith
John Thomson
Andreas Brunner
Deb Clubb
stephen cox
Jane Howick
peter fischer
Lindsey Chazen
Luke Williams
Karen Kyllonen
Irene Wells
carol cumming
Judith Noblitt
candy redman
1,000 signatures

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Showing 644 reactions

  • Lyle Allan
    signed via 2016-02-11 10:08:30 -0500
  • Lynne Gott
    signed 2016-02-11 09:44:00 -0500
  • yacov jutkowitz
    signed 2016-02-11 08:44:03 -0500
  • Frank Freier
    signed 2016-02-11 08:29:30 -0500
  • Louise Zeno
    signed 2016-02-11 06:45:09 -0500
  • Aeon Zeno
    signed 2016-02-11 06:38:46 -0500
  • Elizabeth Moncrieff
    signed 2016-02-11 06:11:30 -0500
    Please stop confusing matters to do with ME by using inappropriately loose criteria.

    You wouldn’t study brain tumors bu including everyone with a headache.
  • Jan van Roijen
    posted about this on Facebook 2016-02-11 05:39:26 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Craig Woods
    signed 2016-02-11 05:39:02 -0500
    If you don’t know what illness you are studying (and with this definition you can’t) your research is entirely worthless and the recommendations potentially dangerous.
  • Jan van Roijen
    signed 2016-02-11 05:38:03 -0500
  • Barbara Mayer
    signed 2016-02-11 05:25:51 -0500
  • Patricia Schmid
    signed 2016-02-11 05:18:37 -0500
  • Susan Atkins
    signed 2016-02-11 05:01:25 -0500
  • Susanna Agardy
    signed via 2016-02-11 04:52:15 -0500
    The NIH and CDC must use proper criteria for ME/CFS and consult recognised experts in order to do worthwhile research into this serious disease. It is not mere fatigue.
  • Susanna Agardy
    posted about this on Facebook 2016-02-11 04:48:57 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Siobhan McElwee
    signed 2016-02-11 04:34:13 -0500
  • Mark Smith
    signed 2016-02-11 04:18:43 -0500
    It is too easy to put all your eggs in one basket, to make them easier to deal with.

    But not all eggs belong to chickens!

    ME needs to be looked at as an individual illness or no improvement of care, diagnosis or treatment will be forthcoming.
  • John Thomson
    signed 2016-02-11 04:03:01 -0500
  • Andreas Brunner
    signed via 2016-02-11 03:52:11 -0500
  • Deb Clubb
    signed 2016-02-11 03:09:20 -0500
  • stephen cox
    signed via 2016-02-11 03:04:33 -0500
    stephen cox
  • Jane Howick
    signed 2016-02-11 02:38:00 -0500
  • peter fischer
    signed 2016-02-11 01:24:47 -0500
    Die Studie muss gestoppt werden.
  • Lindsey Chazen
    signed via 2016-02-11 01:23:24 -0500
  • Luke Williams
    signed 2016-02-11 00:49:28 -0500
  • Karen Kyllonen
    signed 2016-02-11 00:33:21 -0500
    First, do no harm.
  • Irene Wells
    signed via 2016-02-11 00:21:48 -0500
  • carol cumming
    signed 2016-02-11 00:17:48 -0500
  • Judith Noblitt
    signed via 2016-02-10 23:07:53 -0500
  • candy redman
    signed via 2016-02-10 22:28:24 -0500