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

Toby Kaufman
Tamar Fishman
Sue Rapattoni
Lillian Greeley
Ellen V. Piro
George Halleck
Simon Lawrence
Scott Simpson
Agnes Jutkowitz
Camilla Cracchiolo, RN
Detra Simmons
James Groeber
Morag Ross
james hall
Rita Gacon
Kate Williams
Susan Pante
paula jones
Patricia Carter
Paul Broadhurst
Maurice Wellein
Kerstin Händel
Lee Stocker
Pete Vertefeuille
Kayla Steckel
susan stewart
Sarah Darwin
1,000 signatures

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Showing 644 reactions

  • Toby Kaufman
    signed 2016-02-10 13:25:14 -0500
  • Tamar Fishman
    signed 2016-02-10 13:22:34 -0500
    Tamar Fishman
  • Sue Marie
    posted about this on Facebook 2016-02-10 13:22:13 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Sue Rapattoni
    signed 2016-02-10 13:21:00 -0500
    Just one of many incompetent tests that pop up through the years which try to minimize or disprove our illness. I thought we were past that by now but I guess not.
  • Lillian Greeley
    signed 2016-02-10 13:14:59 -0500
    Whence the strength of the opposition?, ie, What is the source of the strength of the opposition?, ie, Why is this humane proposal being fought so vigorously by government and governmental medicine?, ie, Why is this illness being singled out for repression and suppression?, ie, Why is compassion being denied for this illness?, ie, Isn’t this cruel and unusual punishment for an unknown “crime” of being ill with an unknown illness?
  • Ellen V. Piro
    signed 2016-02-10 13:14:10 -0500
  • George Halleck
    signed via 2016-02-10 13:11:47 -0500
  • Simon Lawrence
    signed 2016-02-10 12:58:23 -0500
  • Scott Simpson
    signed 2016-02-10 12:55:35 -0500
  • Agnes Jutkowitz
    signed 2016-02-10 12:53:54 -0500
  • Camilla Cracchiolo, RN
    signed 2016-02-10 12:51:46 -0500
    Camilla Cracchiolo
  • DeDe HartSim
    posted about this on Facebook 2016-02-10 12:47:39 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Detra Simmons
    signed 2016-02-10 12:47:02 -0500
    Let’s stop this and REALLY find a way to help those suffering with this illnesses like my best friend and other friends in my Chronic Illness Group.
  • James Groeber
    signed 2016-02-10 12:17:02 -0500
  • Morag Ross
    signed 2016-02-10 11:51:30 -0500
  • james hall
    signed 2016-02-10 11:51:11 -0500
    This study will be a complete waste of time and money without the proper criteria! Please stop immediately, set the study up properly and then proceed!
  • Rita Gacon
    signed 2016-02-10 11:44:03 -0500
    I woke paralyzed on 5th September 1977. This event repeated itself in September 1978. March 1980, after a SEVERE influenza infection lasting 2 months, bronchitis/tonsillitis and pain, it occurred again….5 times… My tendons, nerve fibres, muscle fibres, and, after 38 years, all body systems are failing. I was diagnosed by Dr. J,. Morgan-Hughes, Neurologist, National Neuro Hospital, Queen Sq. London. six years later. I have cancer, heart disease, lung disease, kidney disease and so much more. This is a viral infection, and I believe I experienced six viral invasions over the six-year period, and relapses. I am permanently disabled and house/bedbound. I am in severe pain, both muscular and neuropathic. Post operative pain in the chest is severe (after 11 and 12 years !!). I suggest you read J. Morgan-Hughes Papers on:- damage to the mitochondria and oxidization of cells. Also, Prof Malcolm Hooper, Peter Behan, Elizabeth Dowsett, and A.Melvin-Ramsay. They are/were the experts in the U.K. They witnessed thousands of cases of this viral infection, and I am sure could differentiate between Epstein-Barr and Coxsackie viral infections. PK Thomas, Royal Free Hospital, did not recognise Royal Free Disease when he was confronted with it. I was lost in the confusion of “second opinions, and lost blood samples”. I never did get offered a follow-up from Addenbrookes Hospital, nor The Royal Free. I got lost in the cracks. Thanks a lot docs. You have all ruined my life. I will not go into detail about surgeons who are not able to read Consent for Surgery Forms !!! I am severely disillusioned with the supposed expertise of the medical profession. I have read ALL my medical Records.
  • Kate Williams
    signed 2016-02-10 11:40:34 -0500
  • Susan Pante
    signed 2016-02-10 11:39:31 -0500
  • paula jones
    signed 2016-02-10 11:10:13 -0500
  • Patricia Carter
    signed 2016-02-10 11:06:25 -0500
    I am glad to see that ME Advocacy is actually looking out for patient interests.
  • Paul Broadhurst
    signed 2016-02-10 10:42:43 -0500
  • Maurice Wellein
    signed 2016-02-10 10:32:07 -0500
  • Kerstin Händel
    signed 2016-02-10 10:17:22 -0500
  • Ann Engelen
    posted about this on Facebook 2016-02-10 10:00:36 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Lee Stocker
    signed 2016-02-10 09:22:36 -0500
  • Pete Vertefeuille
    signed via 2016-02-10 09:04:55 -0500
  • Kayla Steckel
    signed 2016-02-10 09:04:18 -0500
  • susan stewart
    signed via 2016-02-10 09:02:36 -0500
  • Sarah Darwin
    signed 2016-02-10 08:43:16 -0500