Comment for the June 2014 CFS Advisory Committee

These are the comments I delivered by telephone to the CFS Advisory Committee today. For the record, the operator told me that they were instructed to cut people off precisely at 3 minutes.

Mary Dimmock and I wrote to Dr. Collins about a number of scientific and policy concerns regarding the P2P Workshop, and I ask that NIH and this Committee give these concerns a fair hearing. It doesn’t matter that the P2P process is the same for every disease. The issue is that P2P is not right for THIS disease, for many reasons, not just the makeup of the Panel. These multiple issues are documented in the letter provided to you yesterday, and I think that we deserve the respect of having those concerns considered and addressed.

The danger posed by this fundamentally flawed P2P process is underscored by your discussion about whether an RFA should draw upon the P2P report. I understand the practicality of wanting to align your recommendation with what NIH is doing, and I recognize the tremendous work presented by Dr. Cook yesterday. But we already know that there are flaws and deficiencies in the entire P2P approach, so basing the RFA even partially upon such marred recommendations is risky, to say the least.

The P2P Panel’s primary source of information will be the systematic evidence review. I am not the only one with concerns about this. Last week, the Solve ME/CFS Initiative told NIH that the review search strategy is likely to result in a “grave and substantial error.” Yet this report will shape the non-ME/CFS expert Panel’s knowledge about the disease. ME/CFS expert input will be constrained to less than two days at the Workshop meeting. It is the non-expert Panel that has the power to make decisions, writing their recommendations in 24 hours after the Workshop meeting.

Your recommendation paves the way for an RFA based on the output of that process. You must recognize that by accepting P2P, you have told NIH that you will also accept an RFA based on recommendations written by a group of people with no expert knowledge of ME/CFS and whose primary source of information is a systematic review laden with grave and substantial errors.

My approach to advocacy is moderate, and I don’t like us vs. them thinking, but in this instance I must stand up and say this is scientifically and politically wrong. P2P as it is unfolding for ME/CFS incorporates multiple significant problems. We cannot afford to cross our fingers and hope the P2P output is good, when we already know it is going wrong. As many of you said yesterday, the 2011 State of the Knowledge meeting identified the gaps in research. NIH has what it needs to issue an RFA now. That is what should happen, and NIH should meaningfully engage with all the ME/CFS stakeholders to find the right path forward.


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2 Responses to Comment for the June 2014 CFS Advisory Committee

  1. Ren says:

    Thank you, Jennie. Would it be practical in anyway for the global patient community to attempt to hire experts to do a proper literature review?

  2. Carrie says:

    Thank you, Jennie!

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