In this newsletter, we cover a reminder about National Advocacy Day (April 3) and the NIH Conference on ME/CFS (April 4/5), two new continuing medical education (CME) resources for health care providers, a summary of our successful event at Hampshire College on February 21, and activities at the Centers for Disease Control and Prevention (CDC).
Washington DC Lobby Day, organized by Solve ME/CFS and #MEAction, will take place on Wednesday, April 3, 2019. Anyone is welcome to travel to Washington for this big congressional advocacy event. You’ll meet with your own members of Congress and/or their staff. If you plan to attend in person, register with Solve ME/CFS - registration closes on March 6, 2019 -- and let us know. We may be able to help with travel expenses for MA attendees, especially if your US Representative is Lori Trahan or Bill Keating. We are also trying to find someone from Maine who can attend in person. If you are not able to travel to Washington, you can attend a meeting with your MA congressional representative by phone. Like last year, we will have meetings with all 9 US Representatives from MA, plus our 2 Senators. Please let us know if you would like to join by phone. Do not contact Solve ME/CFS or #MEAction about phone calls -- we are coordinating these separately. Another way to participate is to write a letter to your Senator or Representative, describing your personal ME/CFS story. If you send these letters to us at general at massmecfs dot org, we will hand deliver them on April 3rd.
The NIH Conference "Accelerating Research on ME/CFS" will take place April 4th and 5th on the NIH campus in Bethesda, MD. The conference is for researchers, but members of the public are welcome to attend and it will be videocast. Please register here to attend in person or remotely. Even if you can only watch part of the conference, we hope that you will sign up. This is an important opportunity for the patient community to underscore the need for more research.
Two new continuing medical education (CME) offerings will inform primary care physicians, and other health care providers, about the diagnosis and treatment of ME/CFS. The Michigan State Medical Society (MSMS) released two free, on-demand webinars for healthcare provideers. Lucinda Bateman, M.D., from Utah's Bateman Horne Center, an expert in the multisystem disease, presents "Update on Chronic Fatigue Syndrome Part 1: Clinical Diagnostic Criteria for Chronic Fatigue Syndrome/CFS now called Myalgic Encephalomyelitis or ME/CFS" and "Update on Chronic Fatigue Syndrome Part 2: Uniting Compassion, Attention and Innovation to treat ME/CFS." MSMS is nationally accredited, allocating CME credits to physicians across the United States. This program was jointly developed by Dr. Bateman and Lori Kroger, RN, President of Michigan's Patient Alliance for Neuro-endocrine-immune Disease Organization for Research & Advocacy, Inc. (PANDORA Org), a patient advocacy group. It's the first time nonprofit entities and patient groups outside the government have offered nationwide CME credits to increase clinicians' knowledge on how to diagnose and care for ME/CFS patients.
The CDC just released a CME course on Diagnosing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experts Weigh In, featuring Dr. Bateman, along with Dr. Natalie Azar, Dr. Nancy Klimas and Dr. Jose Montoya. You will need a free registration with Medscape to view the description of the course. The CDC course is accredited for both physicians and nurses. Please ask your health care providers to take these free courses.
Hampshire College hosted a screening of Unrest with a panel discussion and it was a huge success, with more than 85 attendees from the college and the surrounding community. The panel included Dr. Ron Davis of Stanford, his daughter Ashley Haugen, who is a Hampshire College alumna, Dr. Darren Lynch of Northampton Integrative Medicine and our dedicated advocate, Rivka Solomon. The audience was enthused, engaged, and thrilled to have this chance to interact with Ron Davis here in New England. Many thanks to Prof. Pamela Stone at Hampshire for helping to organize the event, and to #MEAction and the Open Medicine Foundation for promoting it. The presentation slides are available now and video of the panel discussion will be posted soon on our website.
Dr. Elizabeth Unger, Chief of CDC's Chronic Viral Diseases Branch, published a brief update on ME/CFS, highlighting the serious debilitating nature of the disease and the lack of information about it among health care providers. The CDC will hold a Stakeholder Engagment and Communication conference call on Monday, March 11 from 3 to 4 pm. Dr. Unger will give an update and Dr. Benjamin Natelson will give a summary of research on orthostatic intolerance. Members of the public are welcome to submit questions. Please see the website for the email address.
We are always in search of more people to help with our activities. We particularly need assistance with organizing events, revamping 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. And, of course, we always welcome finanical support for our activities in advocacy, education and patient services.
Leah Williams, Association President