Robert Miller posted a statement on Facebook last night revealing that he was one of the members of the P2P Working Group that met at NIH last week. I’ve posted his full comment below, with his permission.
Bob is very positive about the meeting and P2P process. I’ve spoken with several people who attended this meeting, and I have heard mixed reactions. Some are positive, some quite negative. The members of the Working Group are all, as Bob says, some of our best experts. Bob says that NIH listened to their input, and that the Working Group “drove the agenda” for the P2P Workshop. Again, I have not heard the same optimistic assessment from everyone who attended the meeting.
As I said before, there are two fundamental problems with the P2P process:
- The P2P panel cannot – by design – include anyone who has ever published on ME/CFS or taken any position on it. The Workshop could be exactly as Bob and the other Working Group members designed, but non-experts will do the evidence review and non-experts will comprise the entire Panel. That Panel will write the final recommendations, not the Working Group or meeting presenters.
- There is no transparency. I am very glad Bob came forward to acknowledge his participation in the Working Group. But the questions they finalized at the meeting have not been made public. The roster of the Working Group has not been made public (although word is leaking out). My understanding from two people who attended the meeting was that the discussions at the meeting were confidential. While Bob and the Working Group nominated potential panelists, the actual selection process will be done in secrecy. We will have no input, and no idea who those panelists are until the meeting is about to happen.
This is not acceptable to me.
We are constantly admonished not to question the motives of the people involved in these efforts. I do not question anyone’s motives, nor have I seen evidence of a conspiracy. I agree with Bob’s view that we should engage in these issues in a positive and professional way. My advocacy “career” is based on those values.
But a P2P Panel that will not include any ME/CFS experts? A Panel that will be selected behind closed doors? An evidence review conducted by non-experts? And the outcome of the process is a series of recommendations on diagnosis, treatment and research? No, no, no, and no.
The ME/CFS advocacy community would never have accepted an IOM committee that had no ME/CFS experts on it. We already know that the P2P panel will involve no ME/CFS experts. I do not accept this, and neither should you.
People have asked me what we can do about it. I am actively pursuing several options, and I will keep you posted.
Here is Bob’s statement from Facebook last night:
A brief update for everyone: last week I was invited as a patient representative to the NIH Working Group meeting for the NIH Pathways to Prevention Workshop on #MECFS (happening in the future). This is what was described as an Evidence-based Methodology Workshop at last Spring’s CFSAC meeting. I was asked at the last minute because the original patient advocate could not attend. The Working Group was charged with preparing questions for a thorough evidence-based literature review to identify gaps in ME/CFS scientific research, and we recommended expert speakers and independent panel members for the workshop itself. You can find details of the P2P program below. It is an independent scientific review, and the same process has been used before with another illness.
I want everyone to know my perspective. The Working Group was composed of some of our best experts, and I developed real respect for the person who will Chair the independent panel. Our experts and I had real input into the agenda and questions. The Working Group drove the agenda, and we will participate in the Workshop. I believe the prep work for the Workshop is being done with strong representation from our illness, laying the foundation for a good outcome.
I have been pretty ill in recent months, so I have been stingy with my energy. It has been difficult to post a lot about what is happening in our illness. With this NIH Workshop in mind, and the other governmental initiatives occurring in ME/CFS, I want to encourage patients to engage positively in federal work on our illness. We have had 25 years of inaction by the federal health agencies, and that hasn’t been good for us. All of us have asked for a serious commitment to ME/CFS by the federal government. That is what President Obama promised my wife. These initiatives – the FDA Drug Development Workshop, NIH Pathways to Prevention Workshop, Institute of Medicine Diagnostic Criteria Panel, the CDC’s 5 year Clinical Assessment Study – are all steps toward a stronger federal response. All of these initiatives are not an accident – they are the result of years of work by many of our patients and advocates, to change the federal approach for the better. Patients educated the FDA last spring in a way that has never happened before, and we have the same opportunity at the IOM meeting coming up. The IOM has strong representation on the ME/CFS Committee because patients engaged in it. We need to mix our expert clinicians & scientists with new experts in relevant fields of biomedical research to change our health. I welcome all of these initiatives and know that we will have to do hard work on the details. We won’t agree with everything in these processes or outcomes, but we need government support and action to improve diagnosis, treatment and understanding of ME/CFS. I continue to believe we need to Unite to make the most of new government attention and that 2014 will be a turning point in so many ways. Happy New Year to every one who suffers from ME/CFS. I promise we will move forward together in 2014!