MassME April 2023 Newsletter - to post on website 2

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In this month's newsletter:

Upcoming Events
2023 Health Needs Assessment Community Listening Forum
Our Letter to RECOVER Clinical Trials
Re-post: MassHealth Renewals
Newsworthy Events and Links
Member Spotlight: Julie Bach

UPCOMING EVENTS

"What Every Provider Should Know About ME/CFS (and how their patients can help them learn)"

Sunday, April 16, 2023, 4:00 P.M. ET

In a combination presentation and interview, Dr. Selinger will talk about how he teaches medical students about ME/CFS, and present the key facts he would like all providers to know. He will also address the challenges of patients face if their providers are not well-informed about ME/CFS. This program is also relevant to other conditions with symptoms similar to ME/CFS.

This is a virtual event via Zoom. There is no fee for this program, as we are donation based. A recording will be available after the event.

REGISTER NOW FOR APRIL 16th SUNDAY CONVERSATIONS

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

SPRING SESSION - REGISTER ANY TIME!

Young Adult Support Group for those with ME/CFS, FM, Lyme, Long COVID, and Chronic Illness

Join us on Zoom the second and fourth Wednesday of the month at 3:30 P.M. ET.

In an effort to streamline the registration process, we are offering one registration for the entire Spring Session. Once registered, you are welcome to attend as many meetings as you like.

Spring Session Dates:

April 12th, 26th

May 10th, 24th

This drop-in Virtual Support Group is interactive and provides a safe space for patients to share stories and experiences, ask questions, and offer one another support.

The group is run by Kerry Lang, LMHC. Kerry is a MA licensed mental health counselor with experience leading groups and workshops for those with chronic illness, specifically those with Lyme disease, and more recently Long COVID and ME/CFS.

Please Note: Due to professional licensing requirements, we are only able to offer this program to Massachusetts residents.

What age is considered Young Adult?
Anyone over the age of 18 who self-identifies as a young adult, either through age or via the life challenges typically experienced by this population. Relevant topics of this group are challenges with college/higher education, starting a career, housing challenges, dating and/or starting a family, and social challenges.

REGISTER NOW FOR THE YOUNG ADULT - SPRING SESSION

2023 Health Needs Assessment Community Listening Forum

The Massachusetts Department of Public Health wants to hear from people in Massachusetts about the health care needs of disabled people in the Commonwealth to inform future initiatives.

MassME wants to make sure that people who are disabled by complex chronic illnesses such as ME/CFS, Long COVID, post-treatment Lyme, multiple chemical sensitivities, etc., and those with disabling symptoms such as dysautonomia, cognitive impairment ("brain fog"), etc., are able to have their voices heard.

We are holding two discussion sessions for small groups of 10-12 people, the first on Thursday April 20th at noon ET, and the second on Tuesday May 2nd at noon ET.

If you are a person who has become disabled due to one of these conditions, or a caregiver, and you live in Massachusetts, we invite you to participate. Registration will be capped at 16 for each session, so if you are interested, we encourage you to register soon.

Read more about this.

REGISTER FOR THE THURSDAY, APRIL 20th, 12:00 P.M. SESSION

REGISTER FOR THE TUESDAY, MAY 2nd, 12:00 P.M. SESSION

Our Letter to RECOVER Clinical Trials

MassME has joined other Long COVID and ME/CFS advocacy groups in expressing concern regarding the inclusion of exercise trials in the NIH's RECOVER initiative.This issue received coverage in Nature recently.

Read our letter here, written by Board member Hayla K. Sluss, Ph.D.

Re-post: MassHealth Renewals

Important news regarding MassHealth (Medicaid and CHIP) health coverage

All current MassHealth members will need to renew their health coverage to ensure that they still qualify for their current benefit. MassHealth members should update their addresses, report household changes, and read all mail from MassHealth.

For more information, visit the MassHealth Eligibility Redeterminations website.

NEWSWORTHY EVENTS AND LINKS

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 speaker 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.

Post-COVID POTS Clinical Trial

There is a post-COVID POTS clinical trial that is now recruiting at six different sites across the US including Harvard Medical School, Brigham and Women's Hospital, Boston, MA.

The inclusion criteria are basically a POTS diagnosis since COVID (nothing from before), and a positive PCR test. Details at clinicaltrials.gov or email clinicaltrials@argenx.com.

Clinical and pathological
overlaps that occur between Long COVID and ME/CFS

This 20 page report by the UK MEAssociation is packed with useful information comparing and contrasting ME and Long COVID.

Long COVID can trigger Chronic Fatigue Syndrome. What's the connection?

Listen to the NPR: On the Record episode with Dr. Alba Azola, a rehabilitation physician and co-director of the Johns Hopkins Post-Acute COVID-19 Team. Plus, Melinda Lipscomb and Whitney Fox share about their experiences living with ME/CFS. They are the co-chairs and co-founders of the Maryland chapter of #MEAction.

Long COVID in the news

In this Boston Globe article, Dr. Jeffrey Parsonnet, an infectious disease doctor who founded the Post-Acute COVID Syndrome Clinic talks about what is known about long COVID, and the questions scientists are working to answer.

Finding a Doctor

Invisible International offers insights into Why It Is So Hard To Find a Lyme Doctor. One could replace “Lyme” with “ME/CFS” and these insights would still apply.

Neuropsychiatric Lyme symptoms: A New Masterclass

Invisible International has just released an important medical education course on neuropsychiatric symptoms associated with Lyme disease, with treatment recommendations for specific manifestations.

MEMBER SPOTLIGHT

"I no longer harbor the suspicion that having the illness is my fault."

When I was finally, at age 52, confronted with a diagnosis of ME/CFS, the first years of living with that diagnosis were like driving in the dark in the rain. I didn’t know if I was going uphill or down, if I was approaching a stop sign or merging onto a freeway. Everything I tried to understand about this condition was obscured by a dark, rain-slicked windshield.

I didn’t even know what to properly call my condition: Chronic fatigue syndrome? Myalgic encephalomyelitis? Both? Nor did I understand which of the symptoms I was experiencing were included in the diagnosis. I didn’t know that difficulty sleeping was a part of it. I didn’t know about post-exertional malaise. I didn’t know if what I had was an autoimmune disorder or not. Needless to say, I had no idea how to go about getting well.

I only knew that I was exhausted, so much more so than my friends and colleagues. I knew that the harder I tried to get well the worse I got. Not knowing any better, I harbored a suspicion that whatever was happening to me was my fault.

To read the rest of Julie's story, click here.