- Last Updated: 08 December 2015 08 December 2015
What's in this newsletter?
3 Important Announcements
1) May 2 Research Roundtable — Register now!
Register now for our spring event on May 2, 2015 at Newton Wellesley Hospital—Research Roundtable, a review of the exciting new research being funded by Solve ME/CFS Initiative (SMCI), one of several privately funded research organizations doing work in the area of ME/CFS.
Registration is now open for the Research RoundTable on May 2, 2015, at Newton Wellesley Hospital from 1 - 3:30 p.m., with check-in beginning at 12:30 p.m.Members attend free! To save time, become a member or renew your membership now.
Learn more and register for this exciting event!
You can register multiple participants
If you received an email invitation from SMCI, please Register here
Getting there and parking
- Newton-Wellesley Hospital is located at 2014 Washington Street, Newton, Massachusetts, near the intersection of Routes 16 and 128 (I-95), one mile south of the Mass Pike (I-90).
- The location is accessible by public transportation including The Ride
- There is a cost for parking; valet parking at a discount is available to those with a handicap placard
We are also looking for volunteers to help on the day of the event – please let us know if you can help via Contact Us
2) Please tell us! Early onset symptoms survey
Are the new IOM diagnostic criteria accurate for early onset illness? What were your first symptoms of ME/CFS?
Let us know in our new 3-minute survey!
Summarized results will be used to inform the CFSAC IOM Working Group. The survey will be open until midnight (U.S. Eastern Time) April 17, 2015.
3) Help fund ME/CFS Research - Spring 2015
“Remarkably little research funding has been made available to study the cause of ME/CFS, mechanisms associated with the development and progression of the disease, or effective treatment, especially given the number of people affected.” ~Institute of Medicine Report Brief
We all fervently wish and hope there will be more money for research on ME/CFS—the causes, treatments and possible cures. The National Institutes of Health have provided pitifully small amounts of research funding every year, and everyone hopes that will change as a result of the Institute of Medicine (IOM) and NIH’s own Pathways to Prevention reports, both of which call for substantial increases in funding for ME/CFS.
While we are working for this, smaller, privately-funded research foundations are raising money and carrying out their own research programs with the help of excellent scientists and clinicians.
Massachusetts CFIDS/ME & FM Association is pleased to participate in these efforts. This year, the pooled contributions from our Spring Funds For Research campaign will be donated to the research program of the Solve ME/CFS Initiative.
In the News
Five Things People With CFS/ME Would Be Happy Never to Hear Again (and What We'd Like You to Say)
Insights from our friends across the pond.
Exploring the impact of the name of a disease
There are a number of factors that can alter the manner in which a disease and its patients are treated. The opinions of patients, clinicians and policymakers can all have an impact, but to what extent are these affected by the name of a disease?
Musings about names and SEID.
Institute of Medicine Report Follow-up
Dr. Ellen Clayton, chair of the IOM study: Diagnostic criteria for ME/CFS, was the featured speaker at a briefing in Washington D.C. sponsored by SMCI on March 25, 2015. You can view both a video and a text version of the presentation.
ME Association (UK) responds to IOM report
On 10 February 2015, The Lancet published an editorial covering the Institute of Medicine report into ME/CFS, their proposal to introduce a new name for both CFS and ME: systemic exertion intolerance disease/SEID and new clinical diagnostic criteria, and the PACE trial. In this article, the ME Association responds.
Research News – ME/CFS
Is ME an autoimmune disease? Posted March 24.
The Role of Antiviral Therapy in Chronic Fatigue Treatment Posted March 25.
Mega Chronic Fatigue Syndrome Project Begins Posted Oct. 11, 2014, worth re-reading.
Dr. Ron Davis is committed to solving the Chronic Fatigue problem. He says “The millions of suffering ME/CFS patients are owed an apology and a concerted urgent effort to find effective treatment.”
ME and CFS Mortality Study
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.
If you are interested in participating, please use this link to access the survey.
Note: We have posted this study in the newsletter previously, but it’s open till Oct. 9, 2015 and we wanted to give others a chance to participate.
Research on Fibromyalgia - you can help
Fibromyalgia research study at Tufts includes Tai Chi activities and fMRI studies. Are you local to the metro Boston area? A clinical trial is recruiting patients. Call the number on web site for more information.
How well does your doctor communicate with you? Conducted by two researchers at the University of Louisville, this study is open to participants regardless of location. They hope that the results of this survey will help health care providers recognize the importance of using positive communication with women with fibromyalgia.
Research News – Fibromyalgia
Taking care of yourself
Fibromyalgia and Chronic Pain Life - Spring, 2015 Edition
This magazine covers many aspects of FM including self-care, medications, and sleep.
Ways to Get Involved with Massachusetts CFIDS/ME & FM Association
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. 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 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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