The Chronic Fatigue Syndrome Advisory Committee (CFSAC) will be holding its first meeting of 2017 this Thursday and Friday, January 12 and 13, in person in Washington, DC. This will be the first meeting with the new DFO (Designated Federal Officer), Cmdr. Gustavo Seinos. CFSAC has had a checkered history in terms of effectiveness, but great progress has been made recently. We will be looking to the new DFO to continue that progress. Several representatives from our Association will be attending the meeting and also giving public testimony. It is also an opportunity for us to interact on a person-to-person level with our federal partners, convey our concerns and share our perspective on many issues.
Hours are noon to 5 p.m. ET on Thursday, and 9 a.m. to 5 p.m. ET on Friday. The meeting will be live streamed. Even if you can’t watch all of the meeting, please tune in and let your computer run so that you can catch as much as possible. Having significant numbers of patients and the public watching is an important statement in itself.
The link to view the meeting, and the agenda for both days, can be found here:
https://www.hhs.gov/ash/advisory-committees/cfsac/meetings/2017-01-12/index.html
Topics to be addressed are recommendations from the Stakeholder Engagement and Pediatric Working Groups, dissemination of medical information, and discussion of the May CFSAC recommendations. In addition there will be the usual agency updates (NIH, CDC, HRSA, SSA, FDA, AHRQ). Also, for the first time, the Department of Veteran Affairs and Department of Defense will be joining the CFSAC though they will not be giving any updates at this meeting. Public comment periods (for those who signed up by January 5th) begin at 2 p.m. on Thursday, and 10:30 a.m. and 1 p.m. on Friday.
Now on the VA website: “Veterans discharged under conditions other than dishonorable who served in the Southwest Asia theater of military operations, which includes the areas specified by regulation, but not Afghanistan, may be entitled to disability compensation for certain undiagnosed illnesses, certain diagnosable chronic disability patterns, and certain presumptive diseases ( as described below) even though these disorders did not become manifest during qualifying service. Veterans who served in Afghanistan on or after September 19, 2001, may be entitled to disability compensation for certain presumptive diseases.” The list of qualifying disabilities now includes Chronic Fatigue Syndrome and Fibromyalgia.
For more information, see http://www.benefits.va.gov/COMPENSATION/claims-postservice-gulfwar.asp. Thanks to Cort Johnson and Gaston Gingues for alerting us to this change.
Check out the top Fibromyalgia stories of the year here: http://nationalpainreport.com/a-year-in-review-2016s-top-fibromyalgia-stories-8832592.html
There is a lot to report here, but for this newsletter we will focus on just two (more next time).
Long-time advocate Mary Dimmock has partnered with Lennie Jason’s research team and mathematician Art Mirin to publish a paper that estimates ME/CFS DALY (disability adjusted life years) and compares that to NIH's analysis of DALY versus NIH spending for 69 categories of spending. The DALY is the World Health Organization's measure of disease burden that combines mortality and morbidity.
The abstract concludes: “This analysis demonstrates that federal research funding for this disease is far less than what would be expected by the burden of the disease. We conclude that the annual research funding for ME/CFS would need to increase twenty-five fold or more to be commensurate with disease burden. This level of funding would best leverage the growing interest of researchers and the significant scientific opportunities that exist to understand the pathology of this disease and to advance diagnostics and treatments.”
Estimating the disease burden of ME/CFS in the United States and its relation to research funding
J Med Therap December 2016. DOI: 10.15761/JMT.1000102 Dimmock ME, Mirin AA, Jason LA.
https://oatext.com/Estimating-the-disease-burden-of-MECFS-in-the-United-States-and-its-relation-to-research-funding.php
CDC Grand Rounds: Chronic Fatigue Syndrome — Advancing Research and Clinical Education
Unger ER, Lin JS, Brimmer DJ, et al. CDC Grand Rounds: Chronic Fatigue Syndrome — Advancing Research and Clinical Education. MMWR Morb Mortal Wkly Rep 2016;65:1434–1438.
This article, a follow up from the recent Grand Rounds presentation, is important because it discusses treatment and management, and may be an indication of how this topic may be addressed in the CDC’s revisions to the “CFS” pages of its website following the Stakeholder Roundtable meeting last September. Free full text: https://goo.gl/4BJbQX i.e. https://www.cdc.gov/mmwr/volumes/65/wr/mm655051a4.htm.
NIH is now targeting end of this month (January 2017) for the ME/CFS Funding Opportunity Announcements that we have been expecting for many months.
See the NIH announcement here:
https://www.nih.gov/research-training/medical-research-initiatives/mecfs/update-funding-opportunity-announcement-me-cfs-research-consortium
For those who are following the politics of Health Care, the New England Journal of Medicine has weighed in.
Perspective: Repealing the ACA without a Replacement — The Risks to American Health Care
Barack H. Obama, J.D.
January 6, 2017DOI: 10.1056/NEJMp1616577
http://www.nejm.org/doi/full/10.1056/NEJMp1616577
From advocate/activist Margaret Parlor in Canada: A senior Canadian researcher has been looking for genetic factors in people with ME/CFS for several years. His studies have already yielded promising results. The next stage of his study involves looking at identical twins where both twins have ME/CFS (“concordant”) or one of the twins has ME/CFS and the other does not (“discordant”). He has already found three sets of identical twins for his study but hopes to find more.
If you are identical twins with discordant or concordant ME/CFS, please contact me at This email address is being protected from spambots. You need JavaScript enabled to view it. (mefminfo @ mefmaction.com) to learn more about the study and what it would involve from you.