Massachusetts CFIDS/ME & FM Association was one of seven ME/CFS patient organizations that signed this letter to the NIH Pathways to Prevention working group, asking for changes to the agenda for the meeting scheduled for December, 2014, and an extension to the public comment period following the issuance of the draft report. There has been no response to this letter to date.
Subject: LETTER TO P2P WORKGROUP MEMBERS FROM MECFS PATIENT ORGANIZATIONS
August 20, 2014
To the members of the Working Group,
We, the undersigned organizations representing ME/CFS patients across the U.S., are writing to express our concern about two issues. This is a follow up to a letter sent earlier (July 25, 2014) by others in the community who have highlighted the same issues.
1. We see a significant gap in the draft agenda for the P2P Workshop on ME/CFS. Specifically, discussion of case definitions has been relegated to a 20 minute presentation ("Case Definition Perspective") outside the context of the Key Questions and Panel discussion.
We strongly urge that the P2P Workshop Agenda be modified to include a full examination and public discussion of this original Key Question: Do the set of ME/CFS definitions encompass the same disease, a spectrum of diseases, or separate discrete conditions and diseases that do not belong together?
It is absolutely essential if the NIH expects to have the results of this study accepted by the ME/CFS patient and advocate community that this foundational question be given sufficient time for a full discussion. Existing data suggest that several of the case definitions identify patients with depression, deconditioning, other non-specified fatiguing conditions, as well as a disease characterized by post-exertional malaise. This lack of diagnostic sensitivity obscures the true nature of the disease described by patients by blurring the distinctions between disparate conditions. There is also a significant and real risk that uncareful use of various nonspecific definitions may lead to including people who have missed diagnoses of major medical diseases which are treatable if properly diagnosed.
We believe that discussion of existing research literature, the prevalence, natural history, treatments, gaps in research, and the rest of the agenda will only be effective if it is grounded in a thorough discussion and understanding of the problems and issues caused by the existence of multiple case definitions which are being used interchangeably. You can see the justification for this request here. It is unfortunate that the timing of the P2P study was not better coordinated with the Institute of Medicine study, which is considering this very question in depth.
2. According to the P2P timetable, the final report will be issued in draft format and open for public comment for two weeks between approximately Dec. 12 and Dec. 25.
Given the comment deadline coincident with the Christmas/New Year holiday period, and considering the disability of the ME/CFS patient population, we urge the group to provide accommodation for that disability by extending the comment deadline for an additional two to three weeks, for example until January 15, 2015, if the comment period begins on Dec. 11.
Granting this accommodation would not interfere significantly with the P2P process flow, but would enable the ME/CFS patient community more time to study the report and provide thoughtful, meaningful and necessary input. This will enable a better set of recommendations and would be much appreciated by the patient community, for whose benefit this study has been undertaken.
Charmian Proskauer, President
On behalf of the Massachusetts CFIDS/ME & FM Association
Also signed by six other ME/CFS patient organizations