NIH/CDC: Stop the CFS Study Using Reeves Definition & Cancel the Study’s Presentation at the Feb. 16th CDC Grand Round

Initiated by MEadvocacy.org

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

Lea Lakai
Anna Kerr
Lois Mirizzi
Michelle Murphy
Ansam Groshong
Lesley Cowin
Carol Goss
Mary Copeland
Luise Neuendorff el Helo
Lisa Gozzard
Susan Wenzel-Bertelsen
Judy Donders
windy mauga
Brenna Meade
Melissa Robinson
Judith Day
Mark LaWarre
Rita LoDuca
Lynette Tate
June Forster
Hanne Qvist
Camille Rathbone Carswell
Dawn Hoisington Bennink
Eileen Holderman
kim cochran
Gunther De Bock
loretta borges
Jim Davidson
Pamela Kaiser
715 SIGNATURES
1,000 signatures

Will you sign?

Showing 644 reactions

  • Lea Lakai
    signed 2016-02-13 05:33:11 -0500
  • Anna Kerr
    signed 2016-02-13 05:31:50 -0500
  • Lois Mirizzi
    signed 2016-02-13 05:31:36 -0500
    Stop the study.
  • Michelle Murphy
    signed 2016-02-13 05:27:00 -0500
    This study is based on idiopathic fatigue and does not include the accompanying neuroimmune components of this illness.
  • Ansam Groshong
    signed 2016-02-13 04:25:49 -0500
  • Lesley Cowin
    signed 2016-02-13 04:21:51 -0500
  • Carol Goss
    signed 2016-02-13 02:34:23 -0500
  • Mary Copeland
    signed 2016-02-13 02:16:32 -0500
  • Luise Neuendorff el Helo
    signed 2016-02-12 23:09:42 -0500
  • Lisa Gozzard
    signed 2016-02-12 22:24:53 -0500
    I hate how much ME is overlooked as exclusively a fatigue issue when it’s so much more than that.
  • Susan Wenzel-Bertelsen
    signed 2016-02-12 21:45:22 -0500
  • Judy Donders
    signed 2016-02-12 21:33:17 -0500
  • windy mauga
    signed 2016-02-12 21:31:21 -0500
  • Brenna Meade
    signed 2016-02-12 20:54:29 -0500
  • Melissa Robinson
    signed 2016-02-12 20:33:58 -0500
  • Judith Day
    signed 2016-02-12 20:27:26 -0500
  • Mark LaWarre
    signed 2016-02-12 20:20:18 -0500
  • Rita LoDuca
    signed 2016-02-12 19:49:55 -0500
  • Lynette Tate
    signed 2016-02-12 19:39:11 -0500
  • June Forster
    signed 2016-02-12 19:18:46 -0500
  • Hanne Qvist
    signed 2016-02-12 19:09:17 -0500
  • Camille Rathbone Carswell
    signed 2016-02-12 19:05:57 -0500
  • Dawn Hoisington Bennink
    signed 2016-02-12 16:30:23 -0500
  • Eileen Holderman
    signed 2016-02-12 16:25:29 -0500
    I am signing this petition because I object to the NIH study that was announced and I object to the CDC’s plans to “educate” thousands of medical professionals about this study at their upcoming Grand Rounds. Below are just some of my reasons for my objections:

    • The NIH study is focused on the symptom of ’fatigue" – not the neuroimmune disease ME.



    • The criteria which will be utilized for the NIH study (CDC’s Reeve’s Empirical) has been long refuted by ME/CFS experts and I, as a former CFSAC Member, along with numerous fellow Committee Members, have publically rejected the use of the Reeve’s criteria – CFSAC has even made a recommendation to abolish its use.



    • There has been no transparency about the preparation of the NIH study in regard to consulting our ME/CFS experts, advocates, and patients for their input and expertise for the study design.



    • The CDC claims to want the input of advocates and patients regarding their educational material by forming the Technical Development Workgroup, yet rejected almost of the input submitted to their agency by CFSAC’s Subcommittee for CDC Web Site Review, which I chaired for years. Furthermore, CDC will propagate more misinformation to medical professionals at the upcoming Grand Rounds, which excluded advocate and patient input.




    For these reasons, among many others, I object to the NIH study and the CDC Grand Rounds presentation and call for both to be stopped.



    Eileen Holderman

    ME Advocate
  • kim cochran
    signed 2016-02-12 15:51:32 -0500
  • Gunther De Bock
    posted about this on Facebook 2016-02-12 15:35:46 -0500
    Sign the petition: NIH/CDC Stop ME/CFS Study Using Reeves Definition
  • Gunther De Bock
    signed 2016-02-12 15:35:18 -0500
  • loretta borges
    signed 2016-02-12 14:35:00 -0500
  • Jim Davidson
    signed 2016-02-12 14:03:51 -0500
  • Pamela Kaiser
    signed 2016-02-12 13:42:29 -0500