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.

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  • signed 2018-05-30 13:11:53 -0400
    Accidentally deleted – re entered name on 5/30/2018 – email used MEadvocacyorg@gmail.com
  • signed 2016-02-15 17:08:01 -0500
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  • signed 2016-02-14 23:33:04 -0500
    Charlie Nordloh
  • signed 2016-02-14 23:28:05 -0500
    Claire Nordloh
  • signed 2016-02-14 23:25:14 -0500
    My mother suffers from ME.
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  • signed 2016-02-14 20:12:57 -0500
    My daughter has suffered with ME since she was 15 years old. Now she is in her 40s. While her husband is at work, I am assisting as caregiver for her between caring for my elderly mother and brother, both in hospice care at my home. NIH and CDC has neglected these ME patients for 30 years, full of disdain and disbelief of the biological causation of the disease which is led to neglect, and outright abuse from the medical establishment worldwide. For those fortunate enough to have parental caregivers, the aging population of caregivers wedged between caring for their elderly relatives and the exponentially increase in chronic debilitating diseases, is crippling our society. This is a very urgent matter that requires immediate and significant government resources. The million US ME patients should not be left out.
  • signed 2016-02-14 20:11:41 -0500
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