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.

Note: Entering mobile phone number is optional.

You must be signed out of the site to see the petition signup form.


Who's signing

rider Cooey
Bianca Ferguson
Kylie Mahar
Pamela Edelson
Fadra Tedesco
Jacqueline Robinson
Astrid Giezen
Patricia White
Alison Barnes
Elisabeth Taylor
Erica Leach
Shanti Woodward
Alisa Guynn
Karen Castro
Natalie Hewitt
Gabriel Wilhelm
Jennifer Robertson
Robbi Patterson
Gail Williamson
Kelly Connor
Marleen De Mesmaeker
Mamie Holst
Shannon Noblitt
Kathleen M. Dickson
Sharon Becker
Amy Ellison
Ken Baker
Lawrence H Good
Hayley Green
1,000 signatures

Will you sign?

Showing 644 reactions

  • rider Cooey
    signed 2016-02-14 00:48:38 -0500
  • Bianca Ferguson
    signed 2016-02-14 00:41:19 -0500
    ME is a complex and severely disabling disease, with many key symptoms beyond fatigue. never is hard to distinguish from so many other disease we need to study the more severe and clear cases. The inclusion of people who DO NOT have ME will drastically and obviously reduce the chances of finding useful and true conclusions. The results of such a study will no doubt be detrimental to ME research and patient quality of life as happened with the Pace trial. DONT waste our minuscule amount of resources on a bad study that might hampers any future efforts to cure the disease that took my life and livelihood away from me. I am 28 and have been disabled for five years.
  • Kylie Mahar
    signed 2016-02-13 23:47:32 -0500
  • Pamela Edelson
    signed 2016-02-13 23:39:37 -0500
  • Fadra Tedesco
    signed 2016-02-13 23:28:56 -0500
  • Jacqueline Robinson
    signed 2016-02-13 22:17:38 -0500
  • Astrid Giezen
    signed 2016-02-13 21:55:05 -0500
  • Patricia White
    signed 2016-02-13 21:53:02 -0500
  • Alison Barnes
    signed 2016-02-13 21:42:30 -0500
  • Elisabeth Taylor
    signed 2016-02-13 21:37:33 -0500
  • Erica Leach
    signed 2016-02-13 21:27:03 -0500
    Please stop this nonsense. Most cases of ME are related to mold exposure and mold illness, as well as heavy metals and other toxicity. This should be the focus and ME sufferers are angry that these studies are so off track.
  • Shanti Woodward
    signed 2016-02-13 21:26:36 -0500
  • Alisa Guynn
    signed 2016-02-13 21:14:17 -0500
  • Karen Castro
    signed 2016-02-13 21:03:32 -0500
  • Natalie Hewitt
    signed 2016-02-13 20:58:55 -0500
  • Gabriel Wilhelm
    signed 2016-02-13 20:43:38 -0500
  • Jennifer Robertson
    signed 2016-02-13 20:42:58 -0500
  • Robbi Patterson
    posted about this on Facebook 2016-02-13 20:38:25 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Robbi Patterson
    signed 2016-02-13 20:37:57 -0500
  • Gail Williamson
    signed 2016-02-13 20:34:37 -0500
  • Kelly Connor
    signed 2016-02-13 20:22:13 -0500
    ME is deadly and it is contagious in some circumstances.
  • Marleen De Mesmaeker
    signed via 2016-02-13 20:20:28 -0500
  • Mamie Holst
    signed 2016-02-13 19:45:38 -0500
    Mamie Holst
  • Shannon Noblitt
    signed 2016-02-13 19:39:06 -0500
  • Kathleen M. Dickson
    signed 2016-02-13 19:35:01 -0500
    I agree this is a really strange “study” – it’s total brainscramble:

    EXCLUSION CRITERIA: “Symptoms or diagnosis of Post-Lyme Disease syndrome”

    All along the CDC Lyme criminals like Alan Barbour said post-Lyme is Chronic Fatigue Syndrome and Fibromyalgia. CDC is not playing with a full deck, here. They’d have to be excluded as “having some psychotic disorder.”

    See more at
  • Sharon Becker
    signed 2016-02-13 19:25:57 -0500
  • Amy Ellison
    signed 2016-02-13 19:04:03 -0500
  • Ken Baker
    signed 2016-02-13 18:43:19 -0500
  • Lawrence H Good
    signed 2016-02-13 18:40:40 -0500
    Lawrence H Good
  • Hayley Green
    signed 2016-02-13 18:14:27 -0500