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

Stacy Hodges
Anita Andersson
Patricia Diamond
Clare Stiles
Jennifer Caldwell
James Whelan
Tammy Fons
Leonie Potgieter
Judy Frederiksen
Anne James
Jen Titley
rhid williams
Jody Smith
Helen Paxford
Charlene McCaw
Barry Davies
Helle Rasmussen
Tracey O hare
Karen Scott
Anita Mcskimking
Debra Brand
jack Kean
Cheryl Lafferty
Shelley Baumbrough
Shannon Walsh
Jessica Davis
Amber Thompson
1,000 signatures

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Showing 644 reactions

  • Stacy Hodges
    signed 2016-02-12 13:27:13 -0500
  • Anita Andersson
    signed 2016-02-12 13:20:09 -0500
    I would like to see the use of the canadian criteria, to ensure that the study really digs deep into the problems caused by myalgic encephalomyelitis!
  • Patricia Diamond
    signed 2016-02-12 12:59:35 -0500
  • Clare Stiles
    signed 2016-02-12 11:35:27 -0500
  • Jennifer Caldwell
    signed 2016-02-12 11:07:54 -0500
  • James Whelan
    posted about this on Facebook 2016-02-12 10:37:51 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • James Whelan
    @iwannameetu69 tweeted link to this page. 2016-02-12 10:37:48 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • James Whelan
    signed 2016-02-12 10:33:38 -0500
  • Tammy Fons
    signed 2016-02-12 10:20:00 -0500
  • Leonie Potgieter
    signed 2016-02-12 10:13:36 -0500
  • Judy Frederiksen
    signed 2016-02-12 10:12:24 -0500
  • Anne James
    signed 2016-02-12 10:03:05 -0500
  • Jen Titley
    posted about this on Facebook 2016-02-12 10:01:46 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Jen Titley
    signed 2016-02-12 10:00:59 -0500
  • rhid williams
    signed 2016-02-12 09:57:56 -0500
    rhid williams
  • Jody Smith
    signed 2016-02-12 09:20:57 -0500
  • Helen Paxford
    signed 2016-02-12 08:03:39 -0500
    I support this as someone with adrenal fatigue and CFS. I have not been able to work for over 2 years. Fortunately for me my husband supports me, but many are not as lucky.
  • Charlene McCaw
    signed 2016-02-12 06:38:43 -0500
  • Barry Davies
    signed 2016-02-12 06:20:48 -0500
  • Helle Rasmussen
    signed 2016-02-12 05:19:34 -0500
  • Tracey O hare
    signed 2016-02-12 04:01:40 -0500
  • Karen Scott
    signed 2016-02-12 02:52:23 -0500
  • Anita Mcskimking
    signed 2016-02-12 02:13:17 -0500
  • Debra Brand
    signed 2016-02-12 00:56:41 -0500
    This IS crazy!!! Of course no one could ’ make up’ ALL of the S/S we have..

    As a disable Nurse after 25 plus years of barely being ‘able’ to work…The games you are playing with my children/ grandchildren…ENOUGH…I HAVE BEEN ATTACKED BY A VIRUS. !!!!

    Your government studies are NOT getting the true victims of this nasty condition/ reto virus condtion we ARE struggling to surive..

    You ‘are ’ and. ’have ’ put our lives in a Holocaust! I have had this disease over 40 years I believe my sentence is long enough I want some real answers! And no more of your psychiatric or psychological profiling something that isn’t there.

    I don’t believe you would be feeling so chipper if you have this either, I didn’t treat my AIDS patients in the early eighties as bad as I have been treated by doctors with this disease! My son has inherited it from me, and my sister killed herself in 2008 from the pain and the anguish of having this terrible condition as you call it.

    You need to call it by its name chronic fatigue and Epstein Barr are viruses that can deeply affect certain peoples lives to the point of disability unable to work, to think clearly, and as far as of fatigue you’re not even close to understanding with someone can I get out of the bed and they know they have to work to put a roof over their children attend their own!

    Shame on you you are going to stand before God knowing you could have done something different to help us I would not want to be you!
  • jack Kean
    signed 2016-02-12 00:52:58 -0500
  • Cheryl Lafferty
    signed 2016-02-11 22:37:02 -0500
  • Shelley Baumbrough
    signed 2016-02-11 22:32:28 -0500
  • Shannon Walsh
    signed 2016-02-11 21:46:37 -0500
    You need to get more/better information about Adrenal Fatigue/Exhaustion as well. It’s crazy what we go through and can’t do anymore.
  • Jessica Davis
    signed 2016-02-11 21:27:20 -0500
  • Amber Thompson
    signed 2016-02-11 20:45:05 -0500