Letter to President Obama re: National Institutes of Health

Tomorrow, I’m mailing yet another letter to President Barack Obama.  This time, it’s in reference to Dr. Francis Collins, Director of the NIH.  There is a workshop planned for September 2014, which, in my opinion and that of other M.E. advocates, should not be taking place.  Please read on:

Re: M.E. (myalgic encephalomyelitis) and Dr. Francis Collins, Director of the NIH (National Institutes of Health)

Dear Mr. President;

Today, my letter is about the planned Pathways 2 Prevention (P2P) workshop, projected to take place September 2014 to discuss the “Role of Opioids in the Treatment of Chronic Pain.”

My daughter is suffering from M.E. Her quality of life is greatly diminished:  she has body pain all the time; suffers horrific headaches; and many other symptoms.

Chronic pain is a huge national problem, and there are many issues associated with opioid treatment. So you would think that NIH would have made an effort to involve stakeholders from across the chronic pain community, right?

There was no patient representation on the Working Group for the meeting. Working Group members provided their input at a meeting held August 28–29, 2013. Multiple advocacy organizations in the fibromyalgia community had no idea the workshop was even happening, including the National Fibromyalgia and Chronic Pain Association. At least one opioid drug manufacturer was also completely unaware of this Workshop – despite having a regulatory affairs office.

I, and many other advocates for ME/CFS, have asked Dr. Francis Collins to cancel the P2P Workshop and reexamine the best way to collaborate with the ME/CFS research and clinical community. The NIH has failed to engage stakeholders in a meaningful and substantive way. The P2P Program is simply not designed to do this, and now there is more proof of that from another planned P2P Workshop.

I think what we’re seeing is indicative of NIH’s mindset. Unlike FDA, which has made great strides towards incorporating patients’ input into decision making, NIH is an ivory tower of researchers with limited history of engaging patients and other stakeholders. It may not even occur to them that they need to do this. NIH is not just failing to engage with ME/CFS stakeholders in the P2P process; NIH is failing to engage with ANY stakeholders through P2P (Pathways 2 Prevention).

In closing, I would like to point out that this planned workshop’s purpose of discussing opioids in treatment of chronic pain has a direct impact on all patients who experience great pain, no matter from which disease they suffer. As an advocate for M.E., I ask that you investigate why no patients’ input is being included in the planned workshop, and why Dr. Collins has approved this project which may harm, rather than help, those who suffer great pain.

Sincerely,

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2 responses to “Letter to President Obama re: National Institutes of Health

  1. Another great letter Carol!

    Like

  2. Thanks, Reality. Have a great day!

    Like

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