We had a successful trip to Washington, DC for Advocacy Day and the NIH conference, we are planning a Millions Missing Event on Boston Common on Saturday, May 11 from 1 to 3 pm, Brigham and Women's Hospital is conducting a research study on fibromyalgia pain, and NIH is seeking your input on how to advance research.
On April 3rd, eleven members of the Massachusetts ME/CFS and FM Association visited Capitol Hill in Washington DC for the Third Annual ME/CFS Advocacy Day. Six additional people joined in by phone. The purpose of the event, which was organized by Solve ME/CFS Initiative and #MEAction, was to meet with Congressional Offices to raise awareness about the millions who suffer from ME/CFS. We asked for their help to support DoD and HHS appropriations language which would provide more research funding for ME/CFS. The team visited all 11 Massachusetts offices (2 Senators and 9 Representatives) and met with Representatives Joseph Kennedy, Jim McGovern and Lori Trahan in person. Meanwhile, almost 200 other advocates from all over the US had 130 other meetings with congressional offices. It was inspiring to see blue Advocacy Day T-shirts all over Capitol Hill.
On Thursday, April 4th and Friday, April 5th, several of us attended the NIH Conference "Accelerating Research in ME/CFS" at the NIH campus in Bethesda, MD. The conference was open to researchers, clinicians and people with ME/CFS. Nearly 300 people attended in person and another 600 watched the videocast (watch the videos here for Day 1 and Day 2). More than 30 presentations covered a wide variety of research ideas and sophisticated scientific techniques. We heard about the NIH intramural study which is pursuing a deep dive into a small cohort of carefully defined people with ME/CFS and healthy controls. This is the kind of study that can only be done at NIH with its vast resources of scientists and technology, and is starting to yield preliminary results. We also heard about preliminary results from the three NIH-funded collaborative research centers at Columbia, Cornell and Jackson Laboratories. And we heard from other big names in the field funded by the Open Medicine Foundation like Ron Davis and Jose Montoya at Stanford, and Jonas Bergquist at Uppsala University. The good news is that there is a lot going on and the science is high quality. The bad news is that there are still multiple possible models of what causes ME/CFS, including immune dysfunction, neuroinflammation, metabolism dysregulation, problems with the central and autonomic nervous system, issues with the microbiome, and more. We need far more research in order to make progress towards a diagnostic biomarker, treatments and, hopefully some day, a cure. In fact, NIH is seeking input on how to advance ME/CFS research. You can enter your responses here until May 1st.
Two other particularly encouraging things about the conference were the focus on new investigators and the focus on clinical practice. Young investigators were invited to a full day workshop before the conference and presented posters at the conference. They learned about how to apply for grants and how to build a career doing ME/CFS research. Now we just need the funding to see them continue in the field. Part of the conference was a panel discussion among expert clinician's, each of them focusing on a different approach to treatment. Like the research, clinical approaches center on may different possible bodily dysfunctions. Fortunately, expert clinicians are working together to develop consensus treatment guidelines and develop medical education modules to disseminate them to health care practitioners.
We hope to see you on Boston Common, near the Brewer Fountain (near Park Street T Station), on Saturday May 11 from 1 to 3 pm to raise public awareness about ME/CFS. Bring a poster or a pair of shoes to symbolize what you or a loved one with ME/CFS is missing since falling ill. If you have a red Millions Missing T-shirt, please wear that. If not, wear something red. This event is cosponsored by us and #MEAction. You can register here, or contact us if you want more information.
Brigham and Women's Hospital is conducting a research study on pain management in fibromyalgia. The purpose of the study is to examine the pain-relieving effects of a transcutaneous electrical nerve stimulator (TENS) device call a Quell for people with fibromyalgia. The Quell is a battery powered device with rechargeable batteries and is strapped to your upper calf with a velcro band. Patients will be assigned to one of two treatment groups by chance: (1) High Intensity or (2) Low Intensity group. Participation involves two meetings, filling out three questionnaire packets, and wearing the Quell device at least two hours every day for three months. If you are interested, please contact Limeng Wan at LWan2 at partners dot org or 617-732-9858.
The ME/CFS Working Group at NIH has issued a Request for Information: Soliciting Input on How Best to Advance Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research. You can submit responses in a webform here to a series of questions about research priorities, strategies to increase the number of researchers, strategies to increase collaboration among researchers, and approaches to help people with ME/CFS better participate in research, among others. The deadline for responses is May 1st, 2019.
We are always in search of more people to help with our activities. We particularly need assistance with organizing events, updating our website, and maintaining our database. If you want to volunteer, please let us know, either by responding to this email or through the Contact Us form on our website. Or join one of our volunteer phone calls on Monday, April 22th or Monday, May 6th at 12 noon (dial 712-775-8962, then enter 698-286). And, of course, we always welcome financial support for our activities in advocacy, education and patient services.
Leah Williams, Association President