Home > Advocacy > Collins: Please Cancel P2P

Collins: Please Cancel P2P

June 2nd, 2014

Denied_SignLast week, Mary Dimmock and I sent a letter to Dr. Francis Collins, Director of NIH, requesting that he cancel the P2P Workshop on ME/CFS and reexamine how to best collaborate with the ME/CFS research and clinical community.

We offered five reasons why we believe the P2P Workshop is not the right way to move forward:

  1. The Workshop is unnecessary and redundant of other efforts on research and case definition.
  2. The Workshop is examining the problem of medically unexplained fatigue, not ME/CFS.
  3. NIH has not engaged or involved stakeholders in a substantive way.
  4. The Workshop is inappropriate for this disease, particularly because the decision makers are non-ME/CFS experts.
  5. The goal of the Workshop is unclear because HHS has made numerous contradictory statements about its purpose.

You can read the letter below, and that was not the only thing we sent. With attachments and supporting documentation, the package came to 38 pages total. I believe that we have provided ample reasoning and evidence in support of our request to Dr. Collins.

Many people have asked me what they can do to try and stop P2P. I believe this request to Dr. Collins is the first step, and there is a very easy way for you to join in. If you have questions or comments, post them here or email me at jspotila AT yahoo DOT com.

 

Dear Dr. Collins:

We are writing to request that you cancel the Office of Disease Prevention’s Pathways to Prevention Workshop on ME/CFS (“P2P Workshop”). Your immediate action is required to ensure that ME/CFS research and policy is based on the best scientific evidence and processes.

In your April 16, 2014 letter to Representative Zoe Lofgren and colleagues, you said that the P2P Workshop would produce recommendations to move the field forward. We believe that this is not the case, and we offer the following documentation to support our conclusion:

  • The Workshop is unnecessary and redundant given the recommendations of disease experts and other NIH efforts to advance ME/CFS research and clinical care. See Attachment 1.
  • The Workshop has been structured to address the problem of medically unexplained fatigue, and not the disease(s) known as ME/CFS. See Attachment 2.
  • NIH has paid lip service to collecting input from stakeholders, but in reality has not involved them in a meaningful way. See Attachment 3.
  • The P2P Workshop process is inappropriate for this disease, particularly because the decision makers will be non-ME/CFS experts. See Attachment 4.
  • The goal of this Workshop is unclear as a result of numerous contradictory and confusing public statements by HHS about the purpose of the Workshop. See Attachment 5.

Dr. Collins, we are not objecting to the P2P Workshop simply to make a political point or for the sake of criticizing federal efforts to address the challenges of this disease. We are appealing for your help because we know you recognize that ME/CFS is a serious public health issue that needs the best of what science can offer. We sincerely believe that the evidence included with this letter raises genuine concerns that the P2P Workshop does not represent the best of what science can offer, and may very well take us in the opposite direction.

For all of these reasons, we request that you cancel the P2P Workshop. Further, we request that NIH reexamine how to best collaborate with the ME/CFS research and clinical community to achieve the goals of a research definition and strategy. Those who are researching and treating this disease are in the best position to define how to move forward.

We thank you for your consideration of this issue, and we look forward to your reply.

Sincerely,

Jennifer M. Spotila, JD                                              Mary E. Dimmock

 

  1. Gabby
    June 2nd, 2014 at 12:06 | #1

    Thank you, Jennie and Mary for this work and excellent letter to Dr. Collins. I also appreciate the easy template that you supplied. It took me two minutes to send the e-mail to Dr. Collins!

  2. Ren
    June 2nd, 2014 at 13:30 | #2

    Thank you, Jennie and Mary.

    Can I ask, please, with reference to: “With attachments and supporting documentation, the package came to 38 pages total.”

    Are these 38 pages essentially “the posts gathered here”* link from the “Tell Dr. Collins to Stop P2P” post? (*http://www.occupycfs.com/tag/p2p/)

    Also, I’m curious if you’ll copy the IOM panel on these issues? As an example of ongoing manipulation, for the committee’s information and for public record?

    And will P2P be addressed at the upcoming CFSAC meeting?

    Sorry for twenty questions. Thank you, again.

    • Jennie Spotila
      June 2nd, 2014 at 14:30 | #3

      The 38 pages were as follows: letter (posted on the blog, 2 pages), additional arguments/points about the P2P process much more detailed than the blog posts I’ve done (11 pages), additional documentation (presentation slides, copies of other letters – 15 pages). If you would like to see any of this, please email me.

      I was not planning to copy the IOM on this. I don’t see it as directly relevant to their task, although it is certainly relevant to their task within the broader landscape.

      The only time allocated for P2P at the upcoming CFSAC meeting are the presentations by AHRQ and NIH, but I don’t know how much time either agency will spend on it in their presentations.

      Never apologize for asking questions!

  3. Ess
    June 2nd, 2014 at 14:46 | #4

    The P2P is directly linked in its mission with the IOM–definite relevance.

  4. Mary Dimmock
    June 2nd, 2014 at 16:07 | #5

    As the letter discusses, the timelines of the two initiatives are not aligned in a way that final P2P recommendations could be made to IOM in a timely fashion.

    However, given that P2P is one of the named inputs to the IOM process, I think it would be useful to email this to IOM to highlight the problems with P2P as a source of information

    • Jennie Spotila
      June 2nd, 2014 at 16:26 | #6

      No objections, Mary. I will do so but with some sort of framing so they see the relevance. It’s a lot of material for them to review.

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