Feb. 10: Live videocast: IOM Report Presents New Diagnostic Criteria for CFS
Members of the authoring committee will present their findings and recommendations at a public briefing beginning at 11 a.m. EST on Tuesday, Feb. 10, in Room 100 of the National Academies’ Keck Center, 500 Fifth St., N.W., Washington, D.C. Those who cannot attend may view a live video webcast of the event.
Feb. 23: PCOCA conference call
The next CDC Chronic Fatigue Syndrome (CFS) Patient-Centered Outreach and Communication Activity (PCOCA) Conference Call will be held on Monday, February 23, 2015, EST. Jose Montoya, MD, is the key speaker. His topic is "Stanford ME/CFS Initiative: Collaboration, Innovation and Discovery." Get more information.
P2P final report to be issued soon
The Final Report of the 2014 Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome should be posted soon. We hope it will incorporate the many suggestions made by patients, advocates, and ME/CFS organizations including the Chronic Fatigue Syndrome Advisory Committee. Watch this page for the report.
Comments given to P2P panel by our members (and others)
The "official" comments from the CFSAC to the P2P Panel are now available for viewing on line. Two of our Association members were active participants in the Working Group that handled this project.
Our Association’s comments (prepared and approved by our Board of Directors and co-signed by the Connecticut CFIDS & FM Association) are also posted online along with comments from over 70 other individuals and organizations in the P2P Library on OccupyCFS.
Advocates from all perspectives have actively engaged in discussions and actions around the IOM and P2P initiatives. Messages have ranged from "STOP!" to "Let's do whatever we can to Get It Right." Which tactics work, or do we need them all? What, actually, are we trying to achieve? Read more in this month's President's Letter.
Case definitions matter!
Question: Do you have fibromyalgia? Answer: It depends on how you define fibromyalgia. A new study from Scotland compares three case definitions for fibromyalgia, and points to issues with all of them. See a discussion of this study.
Wrong name, real illness
Read the excellent review article, "Chronic Fatigue Syndrome: Wrong Name, Real Illness," by Miriam E. Tucker published in Medscape Rheumatology, January 8, 2015. You need to create an account for Medscape, but registration is free. This article is worth the extra step to read.
Patients react to “Fear of exercise” theory
Patients and advocates express their OPPOSITION to a recent study in the Lancet Psychiatry that reworks data from the original PACE study to suggest that fear of exercise must be tackled in the ME/CFS population.
On the Morbid Fascination of Psychiatric Morbidity
Although written in 2002, this editorial is highly relevant to recent trial data regarding “fear of exercise.” Dr. Gurwitt is a retired Psychiatrist who serves as a Board member for the Massachusetts CFIDS/ME & FM Association. In a new postscript to his original article he reiterates the need for a national voice for ME/CFS patients.
Expanding the study of ME/CFS
Congratulations to the Solve ME/CFS Initiative for receiving a $500,000 Catalyst Research Program Award through the Dr. Ralph & Marian Falk Medical Research Trust. According to SMCI's blog, the organization will partner with Drs. Lucinda Bateman, founder and director of the Fatigue Consultation Clinic, and Patrick O. McGowan of the University of Toronto to expand the epigenetic study of myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) originally funded by SMCI in 2012. Learn more.
In Memorium – Vanessa Li, age 34, Feb. 4, 2015
Vanessa, a vibrant though often bed-bound young woman, was a leader in the patient community to raise money for Dr. Ian Lipkin’s microbiome research at Columbia University. Sadly, we add Vanessa’s name to the growing list of those taken by this terrible illness. The many ME/CFS patients who have died either directly or indirectly as the result of their ME/CFS point to the need for more research on mortality in ME/CFS.
Research on mortality and ME/CFS
Researchers at DePaul University are looking to investigate issues related to ME and CFS mortality by hearing directly from surviving family members, friends, and/or caregivers of individuals who had ME or CFS and are now deceased.
The purpose of this study is to document the severity and consequences of ME and CFS. Participants will be asked to complete a confidential online survey and will be given the opportunity to volunteer for an additional in-person or phone interview. The online survey portion is expected to take up to 1 hour of a participant’s time. If you are interested in participating, please use this link to access the survey.
Help improve ME/CFS care – participate in this survey sponsored by CFSAC’s Centers of Excellence Working Group
Have you had difficulty getting access to medical providers who can diagnose and treat ME/CFS? Have you been frustrated with the quality of care you have received from medical providers around ME/CFS? If so, please take 15-20 minutes to answer this survey. Results will be used to establish the need for Centers of Excellence for ME/CFS, a required first step in applying for NIH (or other) grant to develop the Centers. Use this link to access the survey.
What you can do to help yourself (#3 in a series)
#3) Work with your health care provider. Yes, FM and ME/CFS are complicated illnesses that require time, patience and understanding. For doctors without much experience with ME/CFS or FM, your set of symptoms may seem overwhelming and not amenable to dealing with in a 15-minute appointment. But a doctor's ignorance of an illness is not a license to be dismissive of the patient. Here are some suggestions.
Can you volunteer a few hours a month? Here are some specific ways you can help our Association! For these activities, you don't have to live in Massachusetts.
If you can help in any of these ways, please Contact Us or email. You need basic computer skills and ability to work independently. Your contribution of time and skill will make a difference!
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