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

Karen Sonnet
Paul Watton
Jeannette Ketterle Burmeister
Shirley Powers
Andrea Pogan
Andrea Merlin
Inge Baader
Tina Fyfield
Jerrold Spinhirne
Michelle Curtis
Cecelia Coleman
Eileen Stephens
Marie McAuley
Lisa Petrison
Pamela Nankey
lisette wiemes
Marie Johnson
Mj Landvatter
John Dodson
Patricia Hess
Chris Heppner
Sarah Ashley
Crystal Taylor
1,000 signatures

Will you sign?

Showing 644 reactions

  • Karen Sonnet
    signed 2016-02-09 14:30:30 -0500
  • Paul Watton
    signed via 2016-02-09 14:17:08 -0500
  • Jeannette Ketterle Burmeister
    signed via 2016-02-09 14:16:16 -0500
    Not all press is good press when you are dealing with a disease that has been hijacked and distorted by HHS for decades. Much more importantly, not all research is good research. This study is not just bad science, it’s dangerous. We are, without a doubt, better off without NIH spending any money on us than spending it this way.
  • Shirley Powers
    signed 2016-02-09 14:15:04 -0500
    The archaic, flawed Reeves definition of CFS should not be used in any study for CFS/ME and serves only to further diminish chances of actual research on the real disease. ME is not about fatigue. Patients deserve to have a study done on their debilitating disease rather than idiopathic fatigue, and carefully diagnosed by the ME experts using the ICC/CCC definition.
  • Andrea Pogan
    signed 2016-02-09 14:12:02 -0500
  • Andrea Merlin
    signed 2016-02-09 14:11:14 -0500
    Please choose carefully the definition of ME/CFS in your research studies. This disease is horrible and ruins so many lives. We will never get proper treatment if individuals are included in studies that have unexplained fatigue as opposed to the gut wrenching exhaustion and neuro/cognitive/immune issues of ME/CFS
  • Inge Baader
    signed 2016-02-09 14:10:53 -0500
  • Tina Fyfield
    signed 2016-02-09 14:08:38 -0500
  • Jerrold Spinhirne
    posted about this on Facebook 2016-02-09 14:07:36 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Jerrold Spinhirne
    signed 2016-02-09 14:06:49 -0500
    It is a shameful waste of the public money entrusted to you to do more research using the symptom grab-bag, Reeves “empirical” criteria. These criteria, based on unscientific manipulation of questionnaire scoring by the CDC, select a motley group of subjects with nothing in common but reporting feeling tired and poorly for a long spell. It is shocking that any scientific organization would even consider such a ridiculous, nugatory undertaking.

    While the NIH and CDC fritter away public funds on more research about nothing in particular, the neurological disease myalgic encephalomyelitis (ME, ICD-10-CM G93.3) remains virtually unresearched in the US. More specific, science-based ME criteria developed by independent scientists and doctors, free from bureaucratic interference, is available for use in the ME International Consensus Criteria (ME-ICC) published in the Journal of Internal Medicine in 2011. The ME-ICC was used in the recent the Nakatomi et al. brain study, which suggested that neuro-inflammation is a significant feature of ME, and several promising immune studies by the research group at Griffith University in Australia.

    The researchers using the ME-ICC are interested in contributing to scientific knowledge rather than doing useless, busywork studies such as this proposed NIH intramural study based on obsolete, discredited subject selection criteria. As a structural engineer unable to work for 20 years because of ME, I ask you to do the right thing and cancel this wasteful study that can only produce more unreliable, useless misinformation. I would rather have no research at all than have my tax money wasted on such ill-conceived sham research at the NIH.
  • Michelle Curtis
    posted about this on Facebook 2016-02-09 13:59:11 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Michelle Curtis
    @caplestrange tweeted link to this page. 2016-02-09 13:59:08 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Michelle Curtis
    signed 2016-02-09 13:57:51 -0500
  • Cecelia Coleman
    signed 2016-02-09 13:57:45 -0500
    I am among the many people suffering with this disease. I feel like I am dying. Can we please move forward and get help to those of us that are suffering. I do agree with your proposal.
  • Eileen Stephens
    signed 2016-02-09 13:53:50 -0500
  • Marie McAuley
    signed 2016-02-09 13:53:45 -0500
  • Lisa Petrison
    signed via 2016-02-09 13:53:15 -0500
    This definition has never been used in the past. I don’t understand why you would be dredging it up to use it now.
  • Pamela Nankey
    signed 2016-02-09 13:48:27 -0500
  • lisette wiemes
    signed 2016-02-09 13:47:33 -0500
  • Marie Johnson
    signed 2016-02-09 13:46:31 -0500
  • Mj Landvatter
    signed via 2016-02-09 13:45:28 -0500
  • John Dodson
    signed via 2016-02-09 13:43:09 -0500
  • Sarah Ashley
    posted about this on Facebook 2016-02-09 13:42:39 -0500
    Please sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition!
  • Sarah Ashley
    @sarahallegra tweeted link to this page. 2016-02-09 13:42:36 -0500
    Please sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition!
  • Patricia Hess
    signed 2016-02-09 13:40:36 -0500
  • Chris Heppner
    signed 2016-02-09 13:39:12 -0500
    I think the NIH has to learn that the real expertise on ME/CFS lies with researchers outside its boundaries, and rescind its refusal to fund such top doctors as Ron Davis and Ian Lipkin.
  • Sarah Ashley
    signed 2016-02-09 13:38:20 -0500
  • Crystal Taylor
    posted about this on Facebook 2016-02-09 13:37:21 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Crystal Taylor
    @CrystalPSI tweeted link to this page. 2016-02-09 13:37:19 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Crystal Taylor
    signed 2016-02-09 13:36:52 -0500