The P2P Panel’s draft report on advancing ME/CFS research has been published. The report is not the nightmare that many people feared, but it is also not what I had hoped for or what we need.
The advocacy chatter I’ve seen in the last 12 hours (and I have not seen everything) has been overwhelmingly positive. Words like “superb” and “justice” have been used, and it is true that there is much in the report that validates what ME/CFS experts and advocates have been saying for years.
I am in the “bah, humbug” minority, though. While there are strong recommendations in the report, many things that I considered essential for success are missing. For example, the Panel does not seem to have understood post-exertional malaise, how it is distinguishable from fatigue, and the data that show how essential it is to understanding this disease. I don’t blame the Panel for this oversight, necessarily. Given the evidence review and the agenda of the Workshop, they were not presented with much of that data. This is the Achilles heel I’ve been pointing to all year: that the Panel would not be shown the full ME/CFS landscape and therefore, their attempt to chart a course through that landscape would suffer.
There are a number of ME/CFS advocates who believe that NIH does not want to fund research on this disease. Setting aside whether that is true and the accuracy of the alleged reasons for it, the draft Panel report will not solve the problem. Perhaps it’s my legal training, but when I read this draft report I see so many loopholes. If I were NIH and I did not want to increase funding for ME/CFS research or change the institutional approaches to the disease, then I would scan this report looking for ways to continue that policy. I would look for recommendations that I could accomplish at little or no cost, and I would focus on those. Then I could report to the CFS Advisory Committee or Congress that I was making tremendous progress on the recommendations, without actually changing the basic fundamental problem: grossly inadequate funding that is disproportionate to the burden of ME/CFS. From that point of view, this draft report offers many opportunities that NIH could exploit.
I won’t be able to post more detailed comments until after the holidays, but that is where you come in, too. We have until January 16, 2015 to submit comments on the draft report to NIH. After that, the Panel will review all the comments and finalize the report. Instructions for submitting comments are here, and be sure to follow those instructions when you comment.
To the extent that the Panel got things right, it is a direct result of the participation of ME/CFS experts and advocates. The draft evidence review was a disaster, and some of the Workshop presentations fell short. If you watched the Workshop, then you will recognize its impact on the draft. For example, Dr. Hornig’s presentation on the microbiome was obviously persuasive to the Panel. And the patients who spoke at the meeting or submitted comments online were the only source of information for the Panel on the devastating impact of this disease.
If you want NIH to carry on as it has thus far or if you think this report is superb as it is, then you may not see a need to comment. But if you see any flaws in this report, or loopholes that will perpetuate what has been done (and not done) for decades, then you MUST comment on the report. If you think this whole process is illegitimate, or you think the Panel should be recommending adoption of the Canadian Criteria, then submit comments on the report. That is the only way you will be heard by the Panel.
We’ve already seen the impact that the experts and advocates have had thus far by speaking out. Please join us, and tell the Panel what you think of this report.