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

Ron Lord
Mary Ann Kindel
Greggory Blundell
Amy McLaughlin
Liz Willow
Sophia Romanini
Beth Elaine Boel
Lois Ventura
Tracey Smith 💖
Gabby Klein
1,000 signatures

Will you sign?

Showing 644 reactions

  • Ron Lord
    signed 2016-02-09 13:29:25 -0500
  • Mary Ann Kindel
    posted about this on Facebook 2016-02-09 13:29:06 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Mary Ann Kindel
    @MEAdvocacyorg tweeted link to this page. 2016-02-09 13:29:04 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Susan Crandall
    posted about this on Facebook 2016-02-09 13:26:29 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Mary Ann Kindel
    signed 2016-02-09 13:26:15 -0500
    And so the institutional bias against ME continues…despite a years long process culminating in the IOM report (which doctors, researchers and patient protested and didn’t want in the first place) – absolutely nothing has changed – it’s business as usual for the NIH and CDC.
  • Greggory Blundell
    signed 2016-02-09 13:25:37 -0500
  • Amy McLaughlin
    signed via 2016-02-09 13:25:35 -0500
    The only meaningful way to study Myalgic Encephalomyelitis is to use appropriate diagnostic criteria, preferably the ICC. Any studies done with the Reeves ‘empirical’ definition will be useless and cause further harm to a patient population that has been suffering for decades due to the negligence of the NIH and CDC.
  • Liz Willow
    posted about this on Facebook 2016-02-09 13:20:17 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Liz Willow
    signed 2016-02-09 13:19:12 -0500
    Follow the lead of up-to-date researchers and select study participants meeting the ME ICC.
  • Sophia Romanini
    signed 2016-02-09 13:18:45 -0500
    You’re studying fatigue for the Cancer Moonshot disguised as a CFS study. (You want to understand why cancer medications cause fatigue.) Neither ME or CFS is about fatigue. The “marker” that distinguishes this disease from all others is Post-exertional Malaise. But you have not set out to study CFS or ME, you are studying fatigue and therefore you used a criteria that would not even bring in CFS patients because you know their suffering has nothing to do with FATIGUE.
  • Beth Elaine Boel
    signed 2016-02-09 13:11:54 -0500
  • Lois Ventura
    signed 2016-02-09 13:04:46 -0500
  • Tracey Smith 💖
    signed 2016-02-09 12:32:11 -0500
  • Gabby Klein
    signed 2016-02-09 12:04:12 -0500