In this month's newsletter: announcing our annual event, two research studies, a CDC stakeholder call, a reminder to contact your US Representative about H.R. 7057, a volunteer spotlight, and support groups. Read on for details.
In partnership with the Open Medicine Foundation (OMF), we invite you to join us on October 24th for our annual meeting, featuring a presentation entitled “Research Update 2020 – Accomplishments, Goals & Clinical Connections.” This virtual event will include an update on MassME's activities, followed by brief presentations by researchers from the Harvard ME/CFS Collaboration and OMF, and a panel discussion. Information on how to register will be coming soon.
Leonard Jason's group at DePaul University is starting a research study on youth who have had COVID-19 and have not recovered. The goal is to learn more about their experiences so that they can compare them to other illnesses, such as myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). The research team has been studying ME and CFS for decades. Participation in the research involves completing an online questionnaire by both the child and a parent. More information and the questionnaire can be accessed at https://redcap.is.depaul.edu/surveys/?s=AARRAR9JTX. Please feel free to contact Chelsea Torres (ctorre45 at depaul dot edu) with any questions, or if you would like to be contacted about future research opportunities.
This research study investigates whether a method of non-invasive brain stimulation, transcranial Direct Current Stimulation (tDCS), combined with physical exercise can help pain processing in adults with fibromyalgia. The study requires 22 visits over 4.5 months to Spaulding Rehabilitation Hospital Network in Charlestown, MA. They offer $15 compensation per visit for your participation. Requirements include having fibromyalgia for more than 6 months and being 18-65 years old. You can find more information at their website, https://rally.partners.org/study/fibro, or this flyer. If you have any questions, please contact Luna Vasconelos Felippe at lvasconcelosfelippe at partners dot org.
[Editor's Note: Since this study involves aerobic exercise, it may not be appropriate for people who have both FM and ME/CFS.
The CDC will give an update on their ME/CFS activities and Maureen Hanson (Cornell University) will give a presentation on her research into immune dysfunction in ME/CFS. You can join the call directly at this link https://adobeconnect.cdc.gov/ra1o95oszrnl/ or you can dial in at 1-888-391-6584, Participant Code: 2051049. If you need closed captioning, use this link and enter the Event ID: 4537697.
Ask your US Representative to Co-sponsor H.R. 7057! Introduced by Rep. Jamie Raskin (D, Maryland), The Understanding COVID-19 Subsets and ME/CFS Act (H.R. 7057), will authorize a $60 million ($15 million/year over 4 years) program expansion for ME/CFS research at the National Institutes of Health (NIH) and expand public and medical ME/CFS education initiatives. The bill currently has 32 co-sponsors, including Rep. McGovern and Rep. Lynch in Massachusetts (see the full list here). Please ask your US Representative to join them. You can use this form to quickly contact your Representative.
This month we want to highlight our new volunteer, Roshan Kumar, who has hit the ground running with his very well-attended Research Club presentations. Roshan is a research scientist at a startup biotech company in Cambridge where he develops therapeutic antibodies to treat cancer and autoimmune diseases. Roshan’s wife, Radha, was sick many years ago, then got better so they started a family. Then two years ago, she had a relapse and is very sick again.
Through all the ups and downs and dealing with the medical system, Roshan has always been inspired by the courage of people who deal with this disease every day. He wanted to try to use his background and experience to help in some way. Learning about the latest research and trying to communicate it to the patient community seemed like a good fit and a way to educate himself about ongoing efforts to better understand and treat ME/CFS. We are so grateful to Roshan for sharing his expertise.
Open Discussion Support Group: Saturday, September 19th, 10:30 AM (EDT)
Join us for open discussion. Please register here. After registering, you will receive a confirmation email containing information about joining the meeting.
Do-It-Yourself (DIY) Support Group Continues: Sunday, September 20th, 5:00 PM (EDT)
This is the second in a four-part series, presented by a person with ME/CFS, on navigating tests and treatments, and on how to work with doctors to get help. A variety of tools will be shared in monthly zoom meetings and on Slack in the new #support-health-diy channel where we welcome discussion. Please register here.
Research Club: Sunday, September 27th, 5:00 PM (EDT)
Join us for a presentation from 2019 Solve ME/CFS Initiative Ramsay Grant recipients Liisa Selin and Anna Gil from the University of Massachusetts Medical School. Their recent research, “Altered T cells in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)“ has yielded some fascinating preliminary data. The abstract for this research study can be found here: https://solvecfs.org/liisa-selin-and-anna-gil/. Come hear researchers from our own backyard! Register here.
Questions? Comments? Need assistance? Email Jeanne Perrin, Support Group Coordinator, at supportgroups at massmecfs dot org or Direct Message (DM) her on Slack.
We need your help to provide patient services, update our social media, plan our next event, and advocate for more research funding, among many projects. Join our next volunteer phone call on Saturday, October 10th at 12 noon (Video and audio: https://us02web.zoom.us/j/395006189?pwd=S3o2OUpTa0VOU0VPWWVCYU81YXNhQT09, Meeting ID: 395 006 189, Passcode: 301622). Or get in touch through the Contact Us form on our website. And, of course, we always welcome financial support for our work to improve health care and support services for people affected by ME/CFS and FM.
Leah Williams, Association President