In this month's newsletter:
MassME will hold our 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. More details soon.
Restrictions on who is eligible for in-home COVID-19 vaccination (with J&J one-dose vaccine) have been relaxed. Now in-home vaccinations are available for anyone who is unable to get to a vaccine location. It’s no longer necessary that you require ambulance transportation to get to a medical appointment in order to sign up to receive in home vaccination. Persons who are homebound, lack transportation, or for other reasons are unable to get to a vaccine location are eligible.
Learn more here or call the Intake Line at 833-983-0485, Monday through Friday, 9 AM to 5 PM. Representatives are available in English and Spanish and have access to translators for over 100 languages.
Massachusetts Vaxmillions Giveaway! As a bonus, anyone who has been fully vaccinated can register today for your chance to win one of five $1 million prizes or $300,000 scholarship grants (age 12 – 17). If you register by July 22 you will have a chance in all 5 weekly drawings July 29 – August 26 (registration closes on August 19 for the final drawing). Register here.
After decades if ignoring ME/CFS, the prestigious New England Journal of Medicine (NEJM) has published a Perspective by Stephen Phillips and Michelle Williams noting that, “Experience with conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, post-treatment Lyme disease syndrome, chronic Epstein–Barr virus, and even the 19th-century diagnosis of neurasthenia could foreshadow the suffering of patients with long Covid in the months and years following infection." Read "Confronting our Next National Health Disaster - Long Haul Covid." A big thank you to Dr. Phillips, Dr. Williams and the Editorial board of NEJM. For more of Dr. Phillips, check out the lecture he gave to our membership back in May, "The Hazards of Underlying Infections."
The Medical Board of California July Newsletter includes an article called "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID: What Every Physician Needs to Know." If you need something to print out for your health care provider, this is a highly respected source. A huge thank you to Art Mirin and MEAction for years of advocacy to get this published.
Join the NIH-funded mega project, All of Us, to characterize and track the health of one million people in the US for up to ten years. We want to make sure that ME/CFS, FM, POTS, MAST, post-treatment Lyme and related diseases are well-represented in this massive health database. Register here. The sign up process takes about two hours and a key point is that there are no questions about ME/CFS. There is one question about fatigue, and several places to enter "Other," so be sure to include ME/CFS there. NIH will ask for access to your electronic health record and may ask for blood, urine and/or saliva samples for laboratory and DNA tests. Any sample collection will be free to you.
Check out the new post from Nurse Patti on "Could Long COVID bring greater awareness to ME/CFS?" Patti Purcell, M.Ed. BSN, RN, is writing a blog for our website on children and ME/CFS. She brings 30 years of experience, 26 years as a school nurse, to the topic.
The Synagogue Council of Massachusetts held a fantastic zoom event in June on how to promote inclusivity post-pandemic using the adaptations made during the pandemic shutdown. Our very own Rebecca Redner and Rivka Solomon were on the panel. The video and other resources are posted here. Please share widely, especially with your congregation leaders and boards, as this information is applicable to all faiths. This event was a follow-on to Rivka's outstanding essay in the Washington Post about engaging with her synagogue via Zoom during the pandemic.
Patient-led research triumphs! An article about Long COVID, "Characterizing long COVID in an international cohort: 7 months of symptoms and their impact," has been published in the Lancet and presents the results of a survey of 3,762 long haulers. Highlights of the article are summarized on this twitter thread by the first author, Hannah Davis.
Solve ME/CFS Initiative is offering a three part lecture series on Long COVID. The first one, "Long COVID: What do we know so far?," was July 1st and you can watch the recording here. The next one will be in September. Details will be posted here.
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 just email us at volunteer at massmecfs dot org and let us know what you are interested in doing.
Summer Break: Support and discussion groups will be taking a summer break in August. See you in September.
Another Summer Break: There will be no newsletter in August. Talk to you in September.