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

Teresa Burton
Dodi Freel
Jo Healey
Bionic Man
Karen Chinery
Jackie Bodiou
Diana Sklans
Fae Linihan
Phoebe Brookfield
Lydia Schuman
Anya Walker
Adam W
Kathleen Twohey
Mary-Jane Kohler
Lidia Thompson
Rhonda Beech
Michael Leonard
Jill Diprose
Joanna Leonard
Friedemann Eberhardt
James Jones
Lynn Twohey
Julie Goodlaxson
Thea Funk
frieda pol
Randy Pagel
Laura Martin
Barbara Sherer
Diana Yoksas
1,000 signatures

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Showing 644 reactions

  • Teresa Burton
    signed 2016-02-11 20:33:20 -0500
  • Dodi Freel
    signed 2016-02-11 20:22:00 -0500
    I urge you to stand up for what is right, for Truth, for Justice. We are perishing for the need of a United, honest, solution. Our very lives are in your hands, and I hold you both accountable and responsible.
  • Jo Healey
    signed 2016-02-11 19:24:06 -0500
  • Bionic Man
    signed 2016-02-11 19:22:06 -0500
    Overly inclusive patient study definitions (having people who have just prolonged fatigue & a feeling of being unwell after the beginning of the illness could include all manner of illnesses inc,using psychiatric ones – M.E. IS NOT nor HAS EVER. BEEN A PSYCHOGENIC ILLNESS OF ANY TYPE… this canard has been pushed very, very hard by a minority well known special interests in the U.K. had been put to rest SO LONG AGO!). Using a study cohort of people who ‘MIGHT’ have ME, has WASTED THE PRECIOUS FEW MILLIONS that have been afforded this global illness – one that has been hidden from society through various methods.

    Dr. Reeves was the head of CFS Research at CDC and he funnelled $15 million USD from Senate committee looking into Myalgic Encephalomyelitis into OTHER RESEARCH at CDC, having NOTHING TO DO WITH M.E. Research. He always showed disdain for patients and stubbornly showed his completely unfounded bias that was not supported by any good science at the time, that this was a psychological disorder… a psychological disorder most likely the folds of the patients themselves was next to no one or nothing else to blame but themselves – AN OUTRAGE!

    (80% of the patients are still NOT diagnosed at any one time – so the true population figures far surpass the population of any of the most common, well known disabling, potentially fatal, chronic illnesses). 1 – 4 million people are said to have it in the US – that’s not including the 80% non-diagnosed figure, not does it take into account illnesses such as fibromyalgia which are considered for most doctors to be the same disorder just slightly differently manifested. Another useful way to make populations seem MUCH LOWER than they are.



    No respected Myalgic Encephalomyelitis Specialist (the relative small number that do exist) want this egregious definition & want it dispatched with.

    No other very common disabling, chronic, pervasive worldwide disorder has been dealt with such neglect & contempt.

    Please do the right thing, please!
  • Karen Chinery
    signed 2016-02-11 19:19:10 -0500
  • Jackie Bodiou
    posted about this on Facebook 2016-02-11 19:15:02 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Jackie Bodiou
    signed 2016-02-11 19:14:14 -0500
  • Diana Sklans
    signed 2016-02-11 18:58:00 -0500
  • Fae Linihan
    signed 2016-02-11 18:42:11 -0500
  • Phoebe Brookfield
    signed 2016-02-11 18:10:12 -0500
    Please follow the diagnostic guidelines of your own 2015 Institute of Medicine report when choosing your ME/CFS study subjects. The cardinal primary symptom Post-Exertional Malaise (PEM) must be present for a diagnosis of ME/CFS.

    Your study on ME/CFS will be useless if you choose participants using the Reeves Criteria, an outdated criteria which does not include the primary symptom Post-Exertional Malaise (PEM).
  • Lydia Schuman
    signed 2016-02-11 17:52:53 -0500
  • Anya Walker
    signed 2016-02-11 16:51:09 -0500
  • Adam W
    signed 2016-02-11 16:48:57 -0500
    Stop junk science and give us real treatment.

    Btw there is nothing empirical about Reeves.
  • Kathleen Twohey
    signed via 2016-02-11 16:44:02 -0500
  • Mary-Jane Kohler
    signed 2016-02-11 16:42:39 -0500
  • Lidia Thompson
    signed 2016-02-11 15:55:21 -0500
    Lidia Thompson
  • Rhonda Beech
    signed via 2016-02-11 15:18:51 -0500
    A scientist should have an open mind in research.

    Years ago MS patients were treated like this, now we see how every case of MS is different.
  • Michael Leonard
    signed 2016-02-11 15:17:44 -0500
  • Jill Diprose
    signed 2016-02-11 15:08:22 -0500
  • Joanna Leonard
    signed 2016-02-11 14:59:55 -0500
  • Friedemann Eberhardt
    signed 2016-02-11 14:32:57 -0500
  • James Jones
    signed 2016-02-11 14:02:15 -0500
  • Lynn Twohey
    signed 2016-02-11 13:54:30 -0500
  • Julie Goodlaxson
    signed 2016-02-11 13:36:34 -0500
  • Thea Funk
    signed 2016-02-11 13:25:38 -0500
  • frieda pol
    signed 2016-02-11 13:02:04 -0500
  • Randy Pagel
    signed 2016-02-11 11:57:25 -0500
  • Laura Martin
    signed 2016-02-11 11:42:15 -0500
  • Barbara Sherer
    signed 2016-02-11 11:41:42 -0500
  • Diana Yoksas
    signed 2016-02-11 10:30:34 -0500