This is a letter to the community from #MEAction, Solve ME/CFS, and MassCFIDS about our recent U.S. congressional work.
We want to clarify an important issue about our recent advocacy work.
After two years of fierce advocacy by our community, we are thrilled that Senator Ed Markey of Massachusetts has now introduced a tri-partisan Senate resolution (S. Res 508) to raise awareness of, and encourage more immediate government response to, ME/CFS. This key congressional action is the result of a collaborative effort on the part of three organizations: #MEAction, Solve ME/CFS Initiative, and the Massachusetts CFIDS/ME & FM Association.
In the process of introducing the resolution, one line was inadvertently changed. Unfortunately, that change replaced some of our original suggested language with new language that added ambiguity to the text. This ambiguity understandably resulted in confusion and upset in our community.
Since there is now a line in the resolution that can be read in multiple ways, we want to take this opportunity to clarify our intent. Our intention in referencing the 2015 Institute of Medicine (IOM) report Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness has always been to get Senators on record as 1) supporting the IOM’s finding that ME/CFS is a devastating, biological, multi-system disease, and 2) supporting the IOM’s clear call to federal agencies to increase biomedical research. Our intent was not to support the IOM’s suggested name change to SEID or the IOM diagnostic criteria.
Because there is ambiguity and confusion, we wish to now be extra clear: Neither our advocates, our organizations, nor members of the Senate are pushing for the NIH to rename the disease nor to adopt the IOM diagnostic criteria. Our goal is to revise the language to reflect this when subsequent versions of this Resolution are introduced in Congress, in order to make the original intent clear.
We are so proud of this continuing collaborative effort to build support for S. Res 508, also called “A resolution supporting the goals of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome International Awareness Day.” While a resolution does not carry the force of law, the passage of S. Res. 508 would be a critical tool in our efforts to raise awareness on Capitol Hill and improve and accelerate the response of US federal agencies to the crisis of ME/CFS.
On behalf of,
Solve ME/CFS Initiative
Executive Committee of the Massachusetts CFIDS/ME & FM Association
Goodbye to graded exercise therapy but concerns about physical activity programmes – Community Discussion
There were significant concerns about the recommendation of a physical activity programme in the draft ME/CFS guideline, even with the caveats attached. The recommendation that a physical activity programme should be considered if patients would ‘like’ to start one, was felt to imply that there is a choice or a desire involved, rather than increased physical activity being impossible for many.