A monthly speaker series on a wide variety of topics

Please join us on the 3rd Sunday of each month at 4:00 P.M. on Zoom

Free and open to everyone

Presentations will be recorded for later viewing

May Topic:

"Fibromyalgia”

Presented by Paul Monach, M.D.

Sunday, May 15, 2022 at 4:00 P.M.

This Conversation will present an overview of Fibromyalgia: symptoms, risk factors, diagnosis, overlap with other syndromes (CFS/ME, IBS, small fiber neuropathy, and others), and treatment, as well as the pathophysiology, and an introduction to the emerging literature on biomarkers and brain imaging.

Millions Missing 2022 Virtual Event on May 12th

#MEAction is organizing a global virtual event for International ME/CFS Day on May 12th from 1:00pm - 3:00pm (ET).

RSVP here to join this community event to share stories, gain insights and connect with others.

Other events in May include a Virtual Artist Salon on May 16th from 3:00 - 4:30pm (ET), a Virtual Choir, and training events for sharing your story, taking a compelling photo, and writing a letter.

Watch the Millions Missing 2022 page for more details and mark your calendars for September when #MEAction will organize collective action events to raise awareness and push for change.

"From Chronic Injustice to Health Equity" Video Replay Available

JD Davids, a longtime health justice activist living with ME and Long COVID, presented “From Chronic Injustice to Health Equity: Learning from the HIV movement and disability justice to confront ME/CFS in the time of Long COVID” on April 20. This meeting was produced by MassME for the U.S. Action Working Group.

JD discussed current strategies for shifting the narrative on ME, Long COVID and complex chronic conditions, using lessons from HIV activism, disability justice, community mobilization, and alliance building from his decades of movement work.

Long Covid Could Change the Way Researchers Study Chronic Illness

An excellent article appeared in the Sunday Washington Post Outlook section that looks at how patients -- both ME/CFS and Long Covid -- are advocating for more voice in how the $1.15 billion Recover research gets done, and also advocating for more inclusion of existing research on ME/CFS.

"The CDC spent decades dragging its feet on research into ME/CFS." Featured in the article are Tony Komoraoff, Lucinda Bateman, and activist JD Davids.

ME/CFS Filmmaker Needs Help Creating a Public Service Announcement

The PSA is called “Iceberg” and it will be a professionally produced 30-second animated and live action commercial. The goal is to inform the public about how they may obtain a diagnosis, access critical information, sign up for research studies, contribute to ME causes and participate in a global registry.

Special Appeal from Producer, Chesley Heymsfield: Everyone deserves to know if they, or someone they love, has ME. With Covid-19 developing in some people into ME, there is an opportunity for us to raise awareness. The support that we obtain from individuals, foundations and corporations directly impacts our ability to raise awareness. We need your help!

To learn more and for ways to get involved, visit www.DoYouHaveME.com

ECHO Webinar Series

The Long Covid and Fatiguing Illness Recovery Program ECHO continues their monthly webinar series with the following programs:

May 12, 2022:  History of ME/CFS led by Dr Bateman.
June 9, 2022:  ME/CFS Patient Perspective.

Register here for all events

Recordings of past presentations are available on their website.

In addition, a 45-minute, self-paced Long Covid and Fatiguing Illness Recovery Program quarterly short course is now available.

CDC ME/CFS Stakeholder Call
May 13, 2022 at 3:00pm (ET)

The next CDC ME/CFS Stakeholder Engagement and Communication Conference Call takes place on  Friday, May 13th at 3:00pm (ET). Elizabeth Unger (CDC) will present updates and Stephen Gluckman (University of Pennsylvania) will talk about "The Management Options (yes, there are management options) for People with ME/CFS."

No registration is required. Simply click on the zoom link to join the call or dial 1-669-254-5252 or 1-646-828-7666, and enter the Meeting ID: 161 023 4560 and Passcode: 55637917.

Prevalence and Economic Impact of ME/CFS

A new article in Fatigue: Biomedicine, Health and Behavior provides an updated estimate of the prevalence of ME/CFS in the U.S.

Authors Arthur A. Mirin, Mary E. Dimmock, and Leonard A. Jason calculated the new estimates taking into account COVID and its post-acute sequelae (also know as Long COVID).

They found that the prevalence of ME/CFS could rise from a previous estimate of 1.5 million and an annual economic impact of $36 to 51 billion, to between 5 and 9 million, with an economic impact of $149 to $362 billion. These costs include lost income and medical expenses, but not disability benefits and required social services. Nor does it take into account the wages lost to caretakers.

Doctor Discussion Guide for Managing Chronic Fatigue Syndrome

Chronic fatigue syndrome (ME/CFS) can involve dozens of symptoms that range from mild to severe. Asking the right questions during your conversation will help you know what to expect and how to better navigate your condition.

VeryWellHealth published a Doctor Discussion Guide you can download which can help to better communicate better with your physician.  

Run Down: An Endurance Athlete's Race Against Chronic Fatigue

A powerful new memoir about ME/CFS has just been published and is available on Amazon. Michael Gallagher describes his shocking descent from orthopedic surgeon and triathlete to bedbound patient. John Kelty, from #MEAction, says "I give it thumbs up... the book is Long-Covid aware and I found it to be very interesting, it tackles his ME honestly and I think very bravely, and covers many other of his lifetime of successes and failures.  Michael is a doctor ... and that gives an interesting insider perspective of how the medical profession fails people with ME." 

Two Educational Opportunities for Healthcare Professionals

The University of Utah and the Bateman-Horne Center are starting a new medical education program on Long Covid and post-viral syndromes. This series is for healthcare professionals only and will cover the basics of diagnosis and treatment, as well as discussion of case studies. The program started April 19th and continues through November. Let your healthcare providers know about this opportunity. More information. 

More continuing medical education (CME) on Long Covid and post viral syndromes, including ME/CFS, on Tuesday, May 24th at 6:30 P.M. (ET) by Brayden Yellman from the Bateman Horne Center. The goal is to increase provider awareness of and knowledge about post viral syndromes. Cost is $75-100 and participants can earn CME credits. Learn more and register here.

In Case You Missed It...ME/CFS News Segment

A year ago MassME member Rivka Solomon was featured on the PBS NewsHour's popular “Brief But Spectacular” segment. Over 1.2 million people watched this 4 minute video that offers an introduction to ME/CFS and Long Covid. Share it with your friends and family!

New Covid-19 Featured Ally: Generation Lyme

Generation Lyme is a 501(c)3 non-profit that brings patients and supporters together, to build strong bonds, lasting friendships, and the feeling that no Lyme patient has to go through it alone. They are young and hip and host a series of podcasts and live video events that are fun and informative.

Lyme Disease Prevention

Did you know that a Lyme disease rash is NOT USUALLY a bull's eye?

Johns Hopkins Lyme Disease Research Center has a Lyme webpage with important information to help educate yourself and your loved ones with pro-active preventative measures to minimize your Lyme disease risk.

Want to Get Involved?

We have need for volunteers to help with counseling new patients and families, and providing physician referrals. For more information, please visit our Patient Services Information page.

We are also looking for a volunteer to help with scheduling and content selection for our Instagram and Facebook pages. Contact us if interested.