ME/CFS and Long COVID:
Emerging Similarities and Why it Matters
Featuring Dr. Anthony L. Komaroff

Saturday, October 22, 2022

1:00 - 3:00 P.M. ET on Zoom

Dr. Komaroff will talk about “The Emerging Parallels Between ME/CFS and Long COVID”. He will describe not only how the symptoms are similar but also how the two conditions share many of the same physiologic abnormalities and the opportunity Long Covid provides to advance our understanding of ME/CFS and to support clinical trials.

This event is a part of the Association's 2022 Annual Meeting of the Membership.

Anthony Komaroff, MD, is the distinguished Simcox-Clifford-Higby Professor of Medicine at Harvard Medical School and Senior Physician at Brigham and Women’s Hospital in Boston. He has published over 230 research articles and two books. From 1997-2015 he was editor in chief of the Harvard Health Publications Division of Harvard Medical School, the division responsible for disseminating all of the medical school’s health information for the general public. He has been publishing research papers on myalgic encephalomyelitis (ME) since the late 1980s, and currently serves on the National Institutes of Health’s advisory council for ME/CFS research.

The presentation will be recorded for later viewing.

Please Note: Sunday Conversations is not having an event in October. Please join us for the Annual Meeting on Saturday, October 22!

The videos, slides, and other resources from past events are available on the Sunday Conversations Page. 

Massachusetts Offers at-Home COVID19 Prevention Tools (Vaccination and Evusheld) and at-Home Treatments (Bebtelovimab and Remdesivir)

Massachusetts has created a portal for people to access COVID19 vaccinations and Evusheld (monoclonal antibody treatment) at home.

Evusheld can be used in place of the vaccine, or in addition to the vaccine. It involves two injections (at the same time) of two different coronavirus antibodies and provides pre-exposure prevention for people with compromised immune systems or who have had an earlier bad reaction to a COVID19 vaccine. It is typically administered every 6 months. You do not need a doctor's order to receive Evusheld. You do need to create an account on the portal.

You are eligible for Evusheld if you test negative for COVID19. If you test positive for COVID19, you can instead request (on the same website) treatments to fight the infection, such as a different monoclonal antibody (Bebtelovimab) or an antiviral IV (Remdesivir).

Brain Scan Research Study of Myalgic
Encephalomyelitis/Chronic Fatigue
Syndrome (ME/CFS)

The VanElzakker lab at MGH is looking for Boston area participants for a neuroimaging study. Their goal is to determine if neuroinflammation could be one of the causes of ME/CFS. They hope to better understand the mechanisms behind why this illness happens, with the aim of creating better diagnostic tools in the future. Email dsaadi@mgh.harvard.edu if you want to learn more or if you are interested in participating.

IACFS/ME Conference Summaries

If you missed attending the IACFS/ME Conference 2022 in July, you can now catch up on the latest research through publicly available conference summaries. See reports from Miriam Tucker at Medscape, Cort Johnson at Health Rising, ME Research UK, plus twitter threads from the Patient-Led Research Collaborative and Science for ME. 

YouTube Video: ME/CFS Alert Episode 132

Watch Dr. Ken Friedman's new interview with Llewellyn King in the ME/CFS Alert series (28 minutes). In it, Dr. Friedman discusses his current research on Post Active Phase Infectious Syndromes (PAPIS), where many diseases, including Lyme and Long Covid, have post-infection symptoms that are similar to ME.

Protest at the White House Garners Attention

Protesters with ME/CFS and Long COVID gathered in front of the White House on Monday, September 19, including people from Massachusetts. Their message to President Biden is that the pandemic is not over. The protest was covered in many media outlets, including MedPage Today, The Hill, and Time.

MIT MAESTRO Study

Not only is long Covid helping to advance research in ME/CFS, it is also having an impact on Chronic Lyme.  Check out the MAESTRO research project at the Massachusetts Institute of Technology (MIT).

Advances in Medical Education

#MEAction and the Mayo Clinic Rochester have won a grant to improve the diagnosis and treatment of ME/CFS. The project includes developing a Continuing Medical Education course, developing a dedicated webpage with a diagnostic algorithm and management recommendations, and developing materials for patients. The webpage will be available to all Mayo Clinic providers and to external subscribers. The involvement of #MEAction ensures that the information will be accurate and the patients with ME perspective will be taken into account.

"Recognizing Long COVID/POTS/ME/CFS in Students" webinar with Dr. Peter Rowe

For school nurses, providers caring for pediatric populations, and families with young people who are ill with these conditions.

Wednesday October 12, 2022 from 4:30 - 6:00 P.M. ET. Cost: $25, 1.5 Contact Hours for nurses.

Provided by the Northeastern University School Health Academy (NEUSHA). Click for more information and to register.

New Course For Doctors

A new course on treatment strategies for Long COVID and Lyme is being offered by Invisible International. The course is free. CME accreditation is pending 

Each month we feature a story from a MassME member. We will hear from patients, caregivers, and those who help people who live with ME/CFS and FM. It is our hope that through sharing our experiences, we will gain connection, validation, and perhaps feel a little less isolated.

We would love to hear from you!  If you wold like to share your story, please email us.

Can you spare some time to become a Patient Services Volunteer?

Patient Services at MassME provides patient education, mutual support, and health care provider and resource agency referrals. Our program assists patients through one-on-one and group support, and also through our social media.

Using our health care provider data base we respond to patient and family requests for referrals by phone and email. At the same time we provide patient education, answer questions, and inform patients about disability and home care resources.

Volunteers will be given full assistance and support in learning how to make referrals and using our educational materials. We can take into account the amount of time a volunteer can contribute. If you would like to assist patients and their families, our patient services program is one way you could provide real help.

We have a variety of volunteer opportunities for you to share your unique talents.  Visit our Volunteer Page for more information.