- Last Updated: 12 October 2016 12 October 2016
No, it's not political! The surprise is that this is our 3rd "monthly" newsletter this year (time flies, but how did this happen?). Please Contact Us to let us know if these longer newsletters are useful, or if you prefer the briefer special announcements.
“ME/CFS: A surge of interest and knowledge” – Saturday, Nov. 5, 2016, 1 p.m.
Please see details and Register now to attend the program with Dr. Anthony Komaroff.
This event is filling up fast. Register now to reserve your place. Please note important travel advisory.
Patient Day at IACFSME conference, October 27th, Ft. Lauderdale, FL
Not sure yet if you want to attend the IACFS/ME's 12th International Scientific Conference? Here are two additional late-breaking events on October 27th:
- Advocacy Roundtable, 5 p.m., hosted by Charmian Proskauer and Mary Dimmock. Anyone interested may participate (location to be announced in the program). The conference is a rare occasion for patients, caregivers, researchers, and clinicians from all around the US and the world to meet face-to-face. This session allows anyone interested in advocacy to learn about and discuss issues affecting the community internationally.
- Free screening of "Forgotten Plague", directed by Ryan Prior and Nicole Castillo, 6:30 p.m. Hailed a "Must-See Documentary" by the Huffington Post, this movie tells the story of ME/CFS through interviews with patients, clinicians, and researchers. After Ryan Prior came down with ME/CFS in 2006, he embarked on a journey to find out why the CDC and medical system had neglected his disease, leaving millions sidelined from life. The film chronicles Ryan's journey, allowing us to follow along.
REGISTER BEFORE OCTOBER 27 AND SAVE $25-$50! Visit the conference website for more information and to register for the meeting. There will also be a separate pre-conference session hosted by the Institute for Neuro Immune Medicine Oct. 26. Visit www.nova.edu/nim for more information. Spread the word!
New Guidelines for the management of Fibromyalgia
New Guidelines for the management of Fibromyalgia have been published by the European League Against Rheumatism (EULER). Most valuable is a listing of the various possible treatments and the evidence for the effectiveness of each. The strongest evidence is for patient education and non-pharmacologic intervention, but the recommendations also emphasize the need for an individualized approach. The authors caution, however, that the "size of effect for many treatments is relatively modest," and that further research is needed to determine optimal treatment strategies and improve patient outcomes.
Fibromyalgia Pain Study is Recruiting - Boston metro area
This study is still recruiting patients as of October 2016.
This is a brain imaging study of pain responses. The study includes 5-14 assessment visits, lasting from 2-3 hours each. You may be eligible if you are 18-65 years old, are either generally healthy or have fibromyalgia, do not have a serious heart condition or certain other medical conditions, are not taking certain types of medications, and are not pregnant. There is no cost to you for any of the procedures and compensation up to $500.00 is provided.
The research takes place at the Brigham & Women’s Pain Management Center, 850 Boylston St, Chestnut Hill, and at the MGH Martinos Center
for Biomedical Imaging. For further information, please contact the study coordinator Olivia Franceschelli at 617-732-9718 or by email at ofranceschelli :at: partners.org.
ME/CFS Genes Study
The Institute for Neuro-Immune Medicine, under the direction of Dr. Nancy Klimas, is conducting an exciting new research study creating a Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome genetic database, linked to online symptom and function questionnaires, to utilize for future research discovery. The intention of this database is to allow investigators the possibility of nearly limitless research opportunities, such as identifying biomarkers used for establishing diagnoses or correlations between symptom clusters and specific genetic variations among people. If you have been curious to learn about your genetic ancestry, you can use the same results to further research on ME/CFS!
Focus Group on Post-Exertional Malaise – NIH via Workwell Foundation
Dr. Brian Walitt, lead investigator of the ME/CFS Intramural Study, has extended an invitation to Workwell Foundation to help recruit patients for a focus group on post-exertional malaise. If you are a person diagnosed with ME/CFS and have post-exertional malaise, please consider enrolling in this study/focus group. The information gained from the focus group will be used to improve interviews and questionnaires about ME/CFS.
- Millions Missing Massachusetts. Check out story and photos from recent events in Boston and Northampton, MA
- Millions Missing – patient stories. Two personal stories written by long-time ME/CFS activist/advocate and Association member Rivka Solomon were published in influential online publications in conjunction with the Millions Missing September event, one in Huffington Post and one in thehill.com. We know that stories like these are very effective in helping the public and our legislators understand the impact of this disease on real lives.
- Advocates meet with Acting Assistant Secretary of Health, Dr. Karen DeSalvo. This meeting was very positive, and Dr. DeSalvo has committed to a follow up meeting in the near future.
- CFSAC charter was renewed. Renewal of the charter for the Chronic Fatigue Syndrome Advisory Committee happens every two years. This renewal was notable in that three seats on the Committee are now designated for patients. The public can nominate persons to participate. The required Federal Register notice has not yet been issued, so we don’t know when nominations can be offered, but watch for the announcement.
- Congressional letter in support of ME/CFS gathered 55 signatures. Thanks to a prompt and concerted effort by many advocates across the U.S., the letter to NIH Director Dr. Francis Collins urging more funding for ME/CFS research, sponsored by Reps. Zoe Lofgren and Anna G. Eshoo of California, was signed by 55 members of the House of Representatives. Learn more and see the full letter.
- Our Association was represented at the recent stakeholder meeting sponsored by the CDC. The purpose of the meeting was to advise the CDC on updates to its webpages and other medical education materials about ME/CFS. About 60 individuals attended, including patients, researchers, clinicians, medical educators, and representatives from various government agencies. This is the first time such a group has been assembled to advise the CDC on ME/CFS.
- "Metabolic features of chronic fatigue syndrome" by Robert K. Naviaux et al, published this summer in the Journal of the National Academy of Sciences, is a potential game-changer. Read an easy-to-understand but in-depth analysis of the paper’s findings and its implications. Read the full paper.
- A large population-based study from Norway shows that children with ME/CFS have more other medical conditions than children with another chronic illness (Type 1 diabetes mellitus) or healthy peers. In particular, they have often been diagnosed with infections prior to their ME/CFS diagnosis. The authors also note that "The long time spans observed from the first diagnosis of weakness / general tiredness in primary care to a specialist health care diagnosis of CFS/ME might indicate that the treatment of these patients is sometimes not optimal." Indeed. See the full paper.
- And more publicity about the discredited PACE trial. Science writer Julie Rehmeyer shows just how bad the study was. She also presented these findings to North America's largest gathering of statisticians.
- A Race to Produce the First Drug for Chronic Fatigue Syndrome? Jarred Younger Talks.
- With patient advocacy, FDA approves drug for muscular dystrophy without a large clinical trial; could Ampligen be next?
Donate now or during our Annual Appeal
Members can join or renew at any time during the year, and make a donation in any amount at that time, but our Association formally fund-raises only twice a year – in the spring we raise money for research, and at the end of the year we raise money to fund our operations for the coming year. We are an all-volunteer organization, so every dollar we get goes to fund our work. If you value what we do, please consider a donation in any amount. If you receive our formal “annual appeal” letter, please respond as generously as you can. Thank you to all our members and donors, who make our work possible!
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