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

Kerstin Heiling
Peter Ventura
Diane Hagedoorn Ostrander
Pauline Sykes
Marion Würth
Joseph Bleiberg
Barbara Kell
Karin Lehmann
kerry freyne
Rico Landman
Michelle Lieberman
Sue Fensome
Katharina Voss
Francine Desmeules
Luc Van de Velden
Melina Alice Bamforth
Els Van Hoof
Eddy Keuninckx
Regina Clos
Marian Swanenburg
Simon Goodwin
Bettine Molenberg
Cathrine Engsig
Evelyn Pietrowski-Ciullo
brigitte busenkell
Clare Copley
Janet Innes
Steve Brooks
1,000 signatures

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Showing 644 reactions

  • Kerstin Heiling
    signed 2016-02-10 08:07:55 -0500
  • Peter Ventura
    signed 2016-02-10 08:04:09 -0500
  • Diane Hagedoorn Ostrander
    signed 2016-02-10 07:59:11 -0500
  • Pauline Sykes
    signed 2016-02-10 07:45:54 -0500
  • Marion Würth
    signed via 2016-02-10 07:45:51 -0500
  • Joseph Bleiberg
    signed 2016-02-10 07:41:50 -0500
  • Barbara Kell
    signed 2016-02-10 07:38:49 -0500
  • Karin Lehmann
    signed 2016-02-10 07:27:25 -0500
  • kerry freyne
    signed 2016-02-10 07:26:40 -0500
  • Rico Landman
    posted about this on Facebook 2016-02-10 07:26:18 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Rico Landman
    signed 2016-02-10 07:25:42 -0500
  • Michelle Lieberman
    signed 2016-02-10 06:53:28 -0500
  • Sue Fensome
    signed via 2016-02-10 06:44:51 -0500
  • Katharina Voss
    signed 2016-02-10 06:08:26 -0500
  • Francine Desmeules
    signed 2016-02-10 06:01:38 -0500
  • Luc Van de Velden
    signed 2016-02-10 05:35:41 -0500
    Luc Van de Velden
  • Melina Alice Bamforth
    signed via 2016-02-10 05:32:59 -0500
  • CatEye
    @CatEye0611 tweeted link to this page. 2016-02-10 05:22:26 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Els Van Hoof
    signed via 2016-02-10 05:21:15 -0500
  • Eddy Keuninckx
    signed 2016-02-10 04:43:13 -0500
  • Regina Clos
    signed 2016-02-10 04:23:43 -0500
  • Marian Swanenburg
    signed 2016-02-10 03:50:04 -0500
  • Simon Goodwin
    signed via 2016-02-10 03:24:31 -0500
  • Bettine Molenberg
    signed 2016-02-10 03:15:06 -0500
  • Cathrine Engsig
    signed 2016-02-10 03:11:13 -0500
  • Evelyn Pietrowski-Ciullo
    signed 2016-02-10 02:41:31 -0500
  • brigitte busenkell
    signed via 2016-02-10 02:37:50 -0500
  • Clare Copley
    signed 2016-02-10 02:37:38 -0500
  • Janet Innes
    signed via 2016-02-10 02:36:22 -0500
    ME hit me when I was 49 — suddenly and with devastating force. It cost me a solid career and, after a few years the ability to work at all. My life before ME was filled with hard but gratifying work running a business, extensive volunteerism, running a household, active family and social lives, travel, and hobbies I was passionate about. After ME hit, I lost almost all of that, exchanging it for long days when I could barely stand up and unending searches for possible solutions. The unending series of “maybe this will help” and then it didn’t, the doctors who scorned my symptoms. And now, after all the excitement of your announcement, Dr. Collins, that had so many of us crying with joy, hope, pinching ourselves to see if it was a dream — we see in the parameters of this new “study” a sad, wasteful, pointless and potentially very damaging return to where we were 20 years ago. Please, please don’t do this? It won’t teach anyone anything. It will just perpetuate the myths and worse, the scorn. I’m 71 now, in my 22nd year with this disease. I don’t have many expectations of cure or even reasonable management, much less remission. But I can’t bear the thought of another generation wasting away in darkness, both literal and metaphorical.
  • Steve Brooks
    signed 2016-02-10 02:15:53 -0500
    WHY, WHY, WHY are you using the Reeves criteria? Are you deliberately trying to make ME disappear AGAIN? Have you even read the IOM Report? You are really doing your best to make the patient community resent you and distrust you.