"Using wearable technology to measure and manage Long COVID and ME/CFS"

Sunday, May 21, 2023, 4:00 P.M. ET

Recording, slides and other resources from Dr. Selinger’s presentation,

"What Every Provider Should Know About ME/CFS (and How Their Patients Can Help Them Learn)" can be found here.

The full recording is divided into chapters for easier viewing. Feel free to share the link with family, friends, and especially (if you feel it is appropriate) with your health care providers.

Four bridges in Massachusetts will be illuminated in blue on Thursday night, May 11th to raise awareness for World ME Day. Lights will be turned on 45 minutes prior to sunset and off at sunrise.

Check out these bridges that will be lit in blue!

• Zakim Bridge in Boston

• Longfellow Bridge in Boston/Cambridge

• Fore River Bridge in Quincy/Weymouth

• Burns Bridge in Worcester

We encourage you to take pictures and tag us @MassMECFS

Massachusetts Legislature Resolution to Establish a Long COVID Commission

Representatives Mindy Domb of Amherst and Jon Santiago of Boston have put forward a resolution "providing for an investigation and study by a special commission relative to Long COVID related needs" in Massachusetts. This commission would study and recommend ways in which the State could better provide for the needs of those with post-infectious chronic illness, such as public awareness, medical education, social services, data collection, and financial support.

Phil Chernin of MassME testified before the Public Health Committee hearing on May 4 to support this resolution. Written testimony is still being accepted, and this opportunity will be open until the resolution moves forward. We encourage all Massachusetts members to write in support. Be sure to reference Resolution H.2147.  Rep. Domb encourages those submitting testimony to also email their testimony to her at mindy.domb@mahouse.gov. 

#MEAction is partnering with Body Politic for #MillionMissing 2023. The main US event will be held at the Monument on the National Mall in Washington D.C. on May 12th, featuring a press conference and an art installation - rows of cots with pillowcases sent in by those living with ME and Long COVID, to illustrate that the pandemic is not over for millions of Americans. You can watch the livestream of the press conference, and participate by posting on social media.

For details visit the Millions Missing website

Many thanks to all of you who participated in Solve ME's Advocacy Week, either by joining the meetings or sharing on social media. This year the Senate meetings were held in person on Capitol Hill on April 18th, followed by virtual meetings with House Representative offices on April 20th. The 'ask' this year was for both senators and representatives to support the Care for Long COVID Act (S. 801 and HR 1616). The Act aims to help those living with Long COVID, ME/CFS, and other post-infection associated illnesses by accelerating research, improving treatment, educating healthcare providers, and developing partnerships between community-based organizations, social service providers, and legal assistance providers. 

Susan Buckley represented MassME at the two Massachusetts Senate meetings, which were also attended by Emily Taylor and Oved Amitay of Solve ME. In Massachusetts the ME/CFS community can be thankful for the continued stalwart support of Senator Markey, who is sponsoring the Care for Long COVID Act in the Senate. Virtual meetings were held with five MA congressional offices. A huge thank you to Leah Williams and Rivka Solomon who helped lead these meetings, as well as to everyone who joined in this effort and thoughtfully shared their stories.

If you participated in Advocacy Week meetings in April, virtual or in-person, or would like to find out more about what happened, join Emily Taylor of Solve ME for an hour of recap and discussion at the Advocacy Café on Friday, May 12 at 3 pm ET (coinciding with World ME Day).

No registration is required. Mark your calendar, then join at this link. 

We thank all our MA Advocates for making this lobby day a success!

CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call May 17th

The CDC will hold a conference call on Wednesday, May 17th at 3:00 PM ET. Hear updates about CDC activities from Beth Unger and a presentation about the Stop ME/CFS study at Kaiser from Jake Skarbinski. To join the call, click on this link, click on Launch Meeting, enter your email address and name, and click on Join Webinar. Instructions for joining by phone and for asking questions are here.

FEMA National Advisory Council Seeks New Members,
Holds Listening Sessions

The Federal Emergency Management Agency (FEMA) is seeking new members for its National Advisory Council, including people with expertise in the area of disabilities. The Advisory Council advises FEMA on all aspects of emergency response. Wouldn't it be great to have someone from our community at the table? Applications are due May 21st.

FEMA is also holding a series of listening sessions to get stakeholder input on the impact of disabilities, among other things, on resilience in the face of emergencies. Advanced registration is required and attendance is on a first-come, first-served basis. Upcoming sessions are Tuesday, May 9th at 3:00 PM ET,  Thursday, May 25th at 1:00 PM ET,  Tuesday, June 6th at 1:00 PM ET, and Thursday, June 15 at 3:00 PM ET.

Institute for Neuro-Immune Medicine ME/CFS Conference

NSU Florida INIM 2023 Conference will be held on May 19, 2023, with both in-person and online registration. Feature speakers Dr.Nancy Klimas, Dr. Irma Rey, Dr. Travis Craddock, and Dr. Jackie Junco will discuss Clinical and Research Solutions to Complex Problems, including 'What ME/CFS taught us about COVID Longhaulers' and 'Epstein Barr virus and ME/CFS reactivation'.

You may attend in person or by Zoom. Register for free. 

Update on the NIH's Intramural Study

ME patient and former Washington Post reporter Brian Vastag, who was one of the patients who participated in Dr. Avindra Nath's in-depth study at the NIH, has posted an excellent status report on the study and results. (Posted on the social media platform Mastodon.)

STAT News on the NIH's RECOVER Initiative

STAT News published a damning article on the glacial pace and lack of transparency of the NIH's $1.1 billion RECOVER research program into Long COVID. The article also covers the controversy over the inclusion of an exercise trial in RECOVER's clinical trials.

Help the US Government Define Long COVID

Two important opportunities are open now for public comment on the definition of Long COVID. The National Academies of Science, Engineering and Medicine has a questionnaire on the US Government's working definition of Long COVID here. The questionnaire is open until May 12th.

In addition, the National Academies are requesting public comment on the definition of Long COVID through their portal. Public comments will be accepted until June 12th. Learn more about this National Academies project here and see the current government definition of Long COVID here. You do not have to be based in the US to participate.

Long COVID in the news

PBS NewsHour Video: Long COVID symptoms keeping many Americans from returning to work.

16 million Americans have Long COVID, and an estimated 4 million people say long COVID has significantly reduced their ability to carry out day-to-day activities. For many of them, that includes their jobs. 

Special Edition of WORK on ME/CFS and Long Covid

The latest volume of the journal Work: A Journal of Prevention, Assessment & Rehabilitation, has a special section on ME/CFS. This section was guest edited by occupational therapist Amy Mooney, who appeared in our Sunday Conversations series in February. This section begins with Amy’s editorial and then includes eight papers. 

New Paper by David Systrom's Group Dispels Myth that
Long COVID is Deconditioning

A new paper by David Systrom's group at Brigham and Women's Hospital reviews the evidence for real physiological changes underlying the symptoms of fatigue, post-exertional malaise, and orthostatic intolerance in Long COVID, dispelling the myth that Long COVID is due to deconditioning. Similarities with ME/CFS are highlighted.

New guidance on COVID-19 vaccinations

The FDA has issued new simplified guidance, making the updated bivalent COVID-19 vaccine available for more people.

Anyone over the age of 6 months who is unvaccinated, or had their vaccination or last booster prior to September 2022, is eligible for one dose of the new bivalent vaccine now.

If you are 65 years or older, and had one dose of the bivalent vaccine 4 or more months ago, you may get a second dose now. If you are immunocompromised, you can get a second dose after only 2 months.

As always, contact your health care provider for advice or to answer any questions.

The Charles River Community Health Center is having a free COVID-19 vaccine clinic at the Waltham Boys& Girls Club, 20 Exchange St, Waltham, on Saturday May 19th from 11 A.M. - 5 P.M. Open to all people 6 months or older. No appointment, insurance, or ID is necessary.

Dysautonomia International International Conference and Advocacy Day

Dysautonomia International will hold their 2023 conference in Washington D.C. July 14 - 16. This will be followed by their Advocacy Day on Capitol Hill on July 17. Expert speakers will be presenting on topics of interest to the ME community: POTS, autoimmune autonomic ganglionopathy, gastroparesis, autonomic neuropathies, Ehlers-Danlos syndrome, mast cell activation syndrome, Sjogren's disease, long COVID, chronic pain management, coping with chronic illness, and more. There will be a separate program for teens throughout the conference. The list of speakers can be found here. Learn more or register here.

May is Lyme Disease Awareness Month

Here are some non-profit organizations and research resources:

Project Lyme and Global Lyme Alliance are non-profits with a wealth of information and resources for patients.

You can find the latest research at the Johns Hopkins Medicine Lyme Disease Research Center and the Bay Area Lyme Foundation.

Locally, Harvard’s Lyme Wellness Initiative is hosting a virtual webinar, Optimizing life with Lyme disease: Transforming your personal story, on May 22nd.

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