- Last Updated: 17 October 2021 17 October 2021
In this month's newsletter:
- MassME Annual Meeting: NIH Research Update, October 23, 12:30 PM
- Support Groups!
- Invisible Disabilities
- Long COVID Alliance
- October is Dysautonomia Awareness Month
- Heywood Hospital Grand Rounds
- 21st Century Cures Act 2.0
- NIH Telebriefing, October 22
- Learn More: IACFS/ME summaries, long COVID lecture, paper on severe ME/CFS
MassME Annual Meeting, Saturday, October 23, 12:30 - 4:00 PM ET
Join us for our virtual Annual Meeting on Saturday, October 23, 2021. We are delighted to announce that we will have presentations from researchers in the NIH-funded ME/CFS Collaborative Research Network, including Vicky Whittemore (NIH), Avi Nath (NIH), Ian Lipkin (Columbia), Derya Unutmaz (Jackson Laboratory), Maureen Hanson (Cornell), and Cindy Bateman (Bateman-Horne Center). Attendance is free for members, so join or renew today! Register here. Learn more here.
We are restarting our support group program! Our first offering will be a follow-on to the Do-It-Yourself (DIY) Club. Sharon Simas will lead a new discussion group on how we can look at recent ME/CFS research and work with our healthcare providers to consider these new findings and apply it to our care. The first session will be Tuesday, November 16. More support groups will start in January.
Support groups are free to attend and will be offered to our members who will receive an email with instructions for registering. Please note that receiving this newsletter does not automatically make you a member of the Association. You can join or renew your membership here. If you are already a member, thank you for your support. If you are unsure of your membership status, drop us a line at membership at massmecfs dot org.
The Dean Center for Tick Borne Illness at the Spaulding Rehabilitation Network offers support groups that may be of interest. They have an ongoing monthly meeting for people with Lyme disease. The next meeting is Thursday, November 11 at 1:00 PM on managing pain. Register here. On Wednesdays from 12:00 - 12:30 PM, the Dean Center offers a meditation and mindfulness session for people with chronic Lyme or Long COVID. Register here. Finally, a new support group for Long COVID is offered monthly on Thursdays at 3:00 PM. The next session is October 21 and will focus on managing anxiety and depression. Register here.
More than 200 people attended the Invisible Disabilities: Long COVID and Other Post-Infectious Chronic Illnesses event last month. This program was presented by the Health and Disability Partnership at the Massachusetts Department of Public Health, jointly with MassME. The program consisted of individual presentations from three people living with different post-infectious chronic illnesses and a discussion of the similarities and differences by the state's top epidemiologist (recently retired), followed by a panel Q&A. The panel was noteworthy for its diversity, both in terms of the participants and the illnesses represented. We will be releasing a video of this event later this month. Look for the announcement on our website and our YouTube channel.
Long COVID Alliance
MassME is a founding member of the Long COVID Alliance (LCA), a ‘network of patient-advocates, scientists, disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-viral illness.’ Members of the LCA have been very active in keeping Long COVID in the media, with recent articles and stories in Bill of Health (a Harvard Law newsletter), NPR, USA Today, and CNBC. In recent meetings of the LCA, members have been brought up to date on legislative measures such as the Centers of Excellence Act (HR 4292 and S2307) and discussed the proposal to revise ICD coding for ME/CFS. At the September meeting the group heard an excellent presentation by Amy Proal of Poly Bio Research Foundation on a paper she co-authored with Michael VanElzakkar (MGH/Harvard Medical School) on mechanisms by which RNA viruses – including SARS-COV-2 – have been connected to chronic illness. This paper was also presented at the recent IACFS/ME conference.
October is Dysautonomia Awareness Month
October is #DysautonomiaAwarenessMonth! Dysautonomia is an umbrella term to describe a group of medical conditions caused by malfunction of the autonomic nervous system (ANS) which regulates heart rate, blood pressure, digestion, kidney function, temperature control and much more. These conditions are common in people with ME/CFS and FM. To learn more and get involved, check out Dysautonomia International's website.
Heywood Hospital Grand Rounds on ME/CFS
We are delighted to announce that Dr. Anthony Komaroff, Brigham and Women's Hospital, will be presenting a Grand Rounds at Heywood Hospital in Gardner, MA on ME/CFS on October 27. Dr. Parul Monach, also from Brigham and Women's, will be presenting a Grand Rounds on FM early next year. These presentations were coordinated by our board member, Patricia Woods, RN. If you are connected to a medical institution and would like to have someone speak about ME/CFS or FM, please let us know through the Contact Us page on our website.
21st Century Cures Act 2.0
Representatives Fred Upton (R-MI) and Diana DeGette (D-CO) released a 21st Century Cures Act 2.0 discussion draft. This is the much-discussed follow-up to the 2016 21st Century Cures Act, which was designed to help accelerate medical product development and bring new innovations and advances faster and more efficiently to patients who need them. The new version will provide substantial funding for research and will focus on big difficult to tackle problems like long COVID (and ME/CFS). Learn more here. Please contact your congressional delegation and ask them to support the 21st Century Cures Act 2.0. Solve ME makes it easy with this online form.
NIH Telebriefing, October 22, 2021
NIH is hosting a telebriefing on ME/CFS research on Friday, October 22 at 3:00 PM ET. The main presenter will be Rakib Rayhan, M.D., Ph.D. (Department of Neurology, Medstar Georgetown University Hospital). Dr. Rayhan was the recipient of a fellowship award from NINDS (Investigating the neural correlates of fatigue in ME/CFS). During the call, participants will be invited to submit questions using the Q&A feature. Pre-registration is not required. Click here to join the Zoom seminar. Passcode is 816676. If you prefer to dial in by phone, call +1 669 254 5252 and enter the Webinar ID: 161 689 4211 and the Passcode: 816676.
IACFS/ME Conference Summaries. The International Association for CFS/ME conference in August was a huge success, bringing together researchers and clinicians from all over the world to discuss the latest research. If you missed the conference, the ME Association in the UK is publishing excellent summaries of some of the presentations here. Cort Johnson at Health Rising is also posting detailed and excellent summaries here.
Long COVID: What do we know so far? is a three part lecture series offered by Solve ME. The third lecture is Tuesday, October 19 at 1 PM ET (10 AM PT) and features Jill Jaycox (Yale University Medical School) and Carmen Scheibenbogen (Charite University Hospital, Germany). Register here. View the video of the first lecture here and the second lecture here.
A Comprehensive Examination of Severely Ill ME/CFS Patients has been published in the open access journal Healthcare by Ron Davis (Stanford University) and his colleagues. This article reports the results of a large multi-year study, funded by the Open Medicine Foundation, of severely ill ME/CFS patients and healthy controls and provides concrete, peer-reviewed evidence of the immense suffering of patients and the critical need for more research funding.
Volunteer with Us!
Looking for a way to contribute your talents and energy to an important cause? Look no further! Check out our volunteer page for great volunteer opportunities or email us at volunteer at massmecfs dot org and let us know what you are interested in doing.