- Last Updated: 29 December 2015 29 December 2015
Meetings this Month
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.
NIH Pathways to Prevention – ME/CFS report and comments
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.
Does Advocacy Work?
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.
In the News
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.
- In a well written statement, the ME Association challenges the conclusions of the Lancet paper.
- Responses to the Lancet paper from patients and advocates were published in the British Medical Journal.
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.
How you can help yourself and others
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.
- Go to your appointment prepared and take a copy of the IACFS/ME Primer if you can.
- Be respectful, and expect the same in return.
- Offer partnership – you need to work as a team to find the best ways to treat and manage your illness. If you can create a partnership, you have helped to educate one more doctor, and that in itself is a huge contribution. If you cannot create a good partnership, you many need to look for a new health care provider.
- If you have not received a diagnosis, but think you might have ME/CFS or FM, keep an open mind. It’s possible you have another condition that is treatable, possibly even curable! Your doctor needs to explore all possibilities to give you the best care possible.
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.
- Help with "physician referrals" - communicate with patients who need help finding a doctor, perhaps four to six times a month. Response times are flexible. We provide training and ask for at least a 6-month commitment.
- Outreach to medical professionals - research medical/health care professional meetings in Massachusetts and find out if we can set up a table to distribute information on ME/CFS to doctors and other health care professionals.
- Update our database – contact those whose email is bouncing, by postcard or phone. We don't want to lose touch with anyone!
- Work with one of our teams - advocacy, website, or communications.
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!
Amazon Smile Contribute funds to our Association at no cost to you! A portion of the sales price of most items you buy from Amazon.com will be sent to our Association every quarter. To set this up, click on Amazon Smile above, or click on the Amazon Smile graphic on our home page. Search for Massachusetts C F I D S Association in the charities list, and be sure to put spaces between the letters C F I D S. Then start your shopping from smile.amazon.com.
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