“Unrest” shows in the Boston area on October 12 at the Globe Docs film festival. Tickets are going fast. Get yours at 2017 GlobeDocs Film Festival. We are exploring possibilities for other screenings in Massachusetts. If you would like to help arrange a screening in your area, please Contact Us. The U.S. broadcast of Unrest will be on PBS's Point of View in early January. Check local listings for day/time.
Save the date – Saturday, November 4, 2017 for our Association’s annual public program, taking place at the Newton-Wellesley Hospital in Newton, MA. This year’s speaker is Linda Tannenbaum of the Open Medicine Foundation, who will update us on the latest results from their research. Registration for this event will open soon.
“Living with ME/CFS, Tom Camenzind’s Story.” White House Chronicle with Llewellyn King aired a special segment on ME/CFS this past weekend. The episode features Mark and Dorothy Camenzind, parents of Tom Camenzind, who is paralyzed by ME and can only communicate with his parents through sensors attached to his fingers. Solve ME/CFS Initiative CEO Carol Head is also interviewed.
Here is a link to the episode on Vimeo.
It is also available on the "White House Chronicle" web site whchronicle.com, along with a related essay, A Disease That Cries Out for Research as Many Suffer Silently. Llewellyn King is also produces ME/CFS Alert, a series of videos on topics related to ME/CFS, available on YouTube.
ME/CFS and Physical Therapy. Have you looked for a physical therapist who knows something about ME/CFS? The Real Story About Chronic Fatigue Syndrome is the featured article in the September issue of PT In Motion, published by the American Physical Therapy Association. The article states “Research shows that the condition, once ridiculed as imaginary, is a true physiological disease” and tells PTs, “Here's what to look for, and how PTs are helping those who have it.” This is an article you can print and take to your physical therapist.
Several important milestones in ME/CFS research happened this summer which have been quite well publicized. In case you missed them…
The Stanford Cytokine Study
“In an effort to find the cause of chronic fatigue syndrome, researchers have identified 17 immune molecules whose concentrations in patients’ blood correlate with disease severity.” Cytokine signature associated with disease severity in chronic fatigue syndrome patients, Jose G. Montoya et al., June 28, 2017.
For a concise summary of this work, see Blood markers of chronic fatigue syndrome could pave the way to a diagnostic test, published by StatNews, July 31, 2017.
For possible long-range implications, see Scientists Edge Closer To Elusive Lab Test For Chronic Fatigue Syndrome, by Mimiam E. Tucker, Health News from NPR, July 31, 2017.
Special issue on the PACE Trial, Journal of Health Psychology, July 31, 2017
PACE was a trial of therapies for patients with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), a trial that has been associated with a great deal of controversy.
The Journal editor, David Marks, states in the Introduction to Special Issue on the PACE Trial, “ME/CFS research has been poorly served by the PACE Trial and a fresh new approach to treatment is clearly warranted. On the basis of this Special Issue, readers can make up their own minds about the scientific merits and demerits of the PACE Trial. It is to be hoped that the debate will provide a more rational basis for evidence-based improvements to the care pathway for hundreds of thousands of patients.”
American psychologist and Professor of Health Psychology James Coyne, long a critic of the PACE trial, has written a commentary, What to look for in the Special Issue of Journal of Health Psychology concerning the PACE trial.
Finally, a very recent paper which analyzes patient experiences with the PACE recommended treatments, graded exercise therapy and cognitive behavioral therapy, and pacing. Spoiler alert: Pacing gave the best results. GET and CBT, not so much….Myalgic encephalomyelitis/chronic fatigue syndrome patients' reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys, Keith Geraghty, et al. Journal of Health Psychology (Preprint), August 29, 2017.
Open Medicine Foundation (OMF) Community Symposium on the Molecular Basis of ME/CFS, August 12, 2017
This conference brought together a dozen world-renowned scientists who are part of the collaborative team at the Chronic Fatigue Syndrome Research Center at Stanford University. The community symposium updated patients and the public on progress towards understanding the molecular basis of ME/CFS and the team’s plans for the future.
As announced in the August OMF newsletter, you can now read about the details in two pieces published by Raeka Aiyar, who emceed the symposium:
Full video of the day is posted here.
If you are interested in a specific aspect of this research, Melbourne Bioanalytics posted the full list of speakers with start times of each presentation in the video.
Low Dose Naltrexone - Possible Treatment for FM?
ME/CFS/FM Blogger Cort Johnson has been following studies of low dose naltrexone for several years. In this review of Dr. Jarred Younger’s April 18, 2017 paper, Reduced Pro-Inflammatory Cytokines after Eight Weeks of Low-Dose Naltrexone for Fibromyalgia, he puts this work in the context of the role the immune system may play in Fibromyalgia. An Immune Disease? Low Dose Naltrexone (LDN) Fibromyalgia Study Suggests FM Has Inflammatory Side by Cort Johnson, July 10, 2017
Keep your eye on…. Upcoming clinical trial for possible new treatment for Fibromyalgia?
Mass General researcher investigating possible fibromyalgia vaccine, July 27, 2017. The California company EpiGenetics markets a diagnostic blood test for Fibromyalgia. Dr. Bruce Gillis, CEO of EpicGenetics, has made a research gift to the Immunobiology Laboratory at the Massachusetts General Hospital directed by Denise Faustman, M.D., Ph.D., to pursue clinical research regarding a direct treatment for fibromyalgia. Dr. Faustman’s laboratory has been working with a vaccine that alters protein abnormalities in white blood cells, the same abnormalities identified by the EpiGenetics blood test.
With funding from Dr. Gillis, Dr. Faustman is now working on securing Food and Drug Administration approval for a clinical trial to test the vaccine's effectiveness in Fibromyalgia patients. They hope to start recruiting a year from now.