In this month's newsletter -- a new fundraiser, a new service to help people with ME/CFS (and allies) help each other, an article about ME/CFS in JAMA, two new clinical trials seeking participants, and announcements about an NIH telebriefing and Fibromyalgia Advocacy Day. Read on for all the details.
Leah (your Association President) and her friends, Liz and Holly, are running the Boston Athletic Association Half Marathon on Sunday, October 13th, 2019 as a fundraiser for the Massachusetts ME/CFS & FM Association. Please support our team and give now! Your donations enable our association's work to improve health care and support services for people affected by ME/CFS in Massachusetts.
Are you a healthy ally who likes to run? Join our team! You'll get camaraderie, training runs along the Charles River, and a free T-shirt. You can register for the BAA Half Marathon here. Then reply to this email to let us know you will join us.
AMMES Connect is the American ME and CFS Society’s brand new service. It is modeled after Craigslist, a popular classified advertisements website with sections devoted to jobs, housing , items wanted, services, community events, rides and free stuff, among others. AMMES Connect is similar in structure, but offers services tailored specifically to the ME/CFS community. If you need something, or have something to offer, check it out. You will need to register to use the AMMES website, but registration is free.
In a very exciting development, JAMA Network has published an article by Dr. Anthony Komaroff summarizing the April NIH Conference on ME/CFS and giving an update on the state of the field. JAMA has published very little about ME/CFS. They are one of the most widely read English language medical journals in the world and will expose a huge audience to the news that ME/CFS is a debilitating, biological disease that needs to be taken seriously. The article is well worth a read, and the more people who access it, the more likely the editors of JAMA will publish more ME/CFS articles. Thank you, Dr. Komaroff!
Dr. Robert Naviaux, UC San Diego, is seeking participants for a new research study. He needs women with ME/CFS, women with post treatment Lyme disease syndrome (PTLDS) and healthy controls. Participants must live within a two hour drive of San Diego, CA and be able to tolerate weekly blood draws for 1 month. Participants in this study will have priority in a planned Suramin trial next year. If you are interested, contact the Study Coordinator, Rachel Riggs, at rriggs at ucsd dot edu or 619-884-8021. The study starts in August, so if you are eligible, contact Rachel right away.
The Cornell ME/CFS Collaborative Research Center (CRC) is starting a study to use a two-day cardio-pulmonary exercise test (CPET) to invoke post-exertional malaise (PEM). CPET data, along with the analysis of blood samples drawn before and after, has great potential to reveal why exercise negatively affects ME/CFS patients and thus perhaps why patients are also impaired even before increasing their activity level. A total of 90 participants and 90 controls will undergo CPET testing. Participation will be split among three different sites (Ithaca, NY, New York, NY, and Los Angeles, CA). Scroll to the bottom of the NIH clinical trial page for contact information.
NIH will give an update on their ME/CFS research programs on Monday, August 19th, 2019, from 2 to 3 pm. The guest speaker is Dr. Elizabeth Unger from the Centers for Disease Control and Prevention. If you are calling from the US, dial 866-844-9416 and use the participant passcode 7178985.
The International Support Fibromyalgia Network (Support Fibro) is recruiting patients and their caregivers for Fibromyalgia Advocacy Day in Washington, D.C. on September 19, 2019. Registration is now open for those who want to participate. Training for all participants will be provided on September 18 and no experience is necessary. 'We need all of our fibromyalgia warriors to come together to help us advance priorities in research, new fibromyalgia treatments and better education for physicians who diagnose and treat the disease,' said Melissa Talwar, Executive Director, Support Fibro.
If you weren't able to attend the public symposium on June 8th introducing the Open Medicine Foundation (OMF)-funded ME/CFS Collaborative Research Activities at MGH and the Harvard Affiliated Hospitals, videos of all the presentations have now been posted here. Enjoy!
Can you help with our activities? We particularly need assistance with organizing events, revamping our website, and maintaining our database. If you would like to volunteer, please let us know, either by responding to this email or through the Contact Us form on our website. Or join our next volunteer phone call on Monday, August 12th at 12 noon (dial 712-775-8962, then enter 698-286). And, of course, we always welcome financial support for our work to improve health care and support services for people affected by ME/CFS.
Leah Williams, Association President