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

Matina Nicholson
Julie Parsons
Jay Spero
Erik Johnson
Kayleigh Kavanagh
Janice Johnson
Hilde Larsen
Polly Gilreath
Shelley Carlson
Lisa Gentile
Susanna Degaardt
Pam Bryan
John Duncan
Laura Vitale
Alice Woolf
Gudrun Sveinsdottir
Joseph Landson
Gustav Lindberg
Adrienne Wooding
Judith Richman, Ph.D.
John Herd
Anja Jott
Anne Cavanaugh
Michael Allen, PhD
Carolina Lindberg
ahmo garden
Tracey Lamoreaux
1,000 signatures

Will you sign?

Showing 644 reactions

  • Matina Nicholson
    signed 2016-02-09 15:35:32 -0500
  • Julie Parsons
    signed 2016-02-09 15:31:31 -0500
    Stop the crap CDC & NIH. We are human beings not just numbers of irrevelant proportions Help us please!
  • Sharon Lynn Unsworth
    posted about this on Facebook 2016-02-09 15:29:01 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Sharon Lynn Unsworth
    @lynn_unsworth tweeted link to this page. 2016-02-09 15:28:59 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Jay Spero
    signed 2016-02-09 15:27:47 -0500
  • Erik Johnson
    signed 2016-02-09 15:20:59 -0500
    Dr. Collins should get an Oscar.

    Didn’t he look sincere, as he put on his little act about how much he really wants to solve CFS?
    It doesn’t fool anyone who knows what the original evidence was. The moment they “disremember” why this syndrome was coined, you know it’s just the same old charade.
  • Kayleigh Kavanagh
    signed via 2016-02-09 15:17:22 -0500
  • Janice Johnson
    signed 2016-02-09 15:15:04 -0500
  • Hilde Larsen
    signed 2016-02-09 15:13:08 -0500
  • Polly Gilreath
    signed 2016-02-09 15:12:38 -0500
  • Shelley Carlson
    signed 2016-02-09 15:12:28 -0500
  • Lisa Gentile
    signed 2016-02-09 15:08:30 -0500
  • Susanna Degaardt
    signed 2016-02-09 15:05:47 -0500
  • Pam Bryan
    signed via 2016-02-09 15:05:18 -0500
  • John Duncan
    signed via 2016-02-09 15:04:48 -0500
  • Laura Vitale
    posted about this on Facebook 2016-02-09 15:04:02 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Laura Vitale
    signed 2016-02-09 15:03:36 -0500
  • Alice Woolf
    signed 2016-02-09 15:03:36 -0500
    Alice Woolf
  • Gudrun Sveinsdottir
    signed 2016-02-09 15:00:12 -0500
  • Joseph Landson
    signed 2016-02-09 14:58:34 -0500
  • Gustav Lindberg
    signed via 2016-02-09 14:55:42 -0500
  • Adrienne Wooding
    signed 2016-02-09 14:55:12 -0500
    Studies on ME/CFS need to study people who have the disease ie people whose symptoms are exacerbated by extertion. Bio- medical researchers commonly use the Fuduka criteria and or CCC/ICC. The use or the Reeves/Oxford/London/NICE criteria results in many people with diseases other train than the neurological disease ME/CFS being included in the study. The results of such a study are Uninterpretable. At the very least the study needs to separate into sub groups people with Me/CFS as defined by Fuduka/CCC/ICC and SEID.
  • Judith Richman, Ph.D.
    signed via 2016-02-09 14:52:48 -0500
  • John Herd
    signed via 2016-02-09 14:45:55 -0500
    Doctors swear to do no harm. This study will do just that.
  • Anja Jott
    signed via 2016-02-09 14:41:59 -0500
  • Anne Cavanaugh
    signed via 2016-02-09 14:41:48 -0500
  • Michael Allen, PhD
    signed via 2016-02-09 14:39:10 -0500
    All experts agree Reeves criteria was a misguided mistake that makes precise diagnosis impossible and will lead to meaningless research results. To achieve valid and reliable research data one must use either CCC or ICC criteria.
  • Carolina Lindberg
    signed 2016-02-09 14:37:27 -0500
  • ahmo garden
    signed 2016-02-09 14:36:29 -0500
  • Tracey Lamoreaux
    signed 2016-02-09 14:33:14 -0500