Mark your calendars:

MassME Annual Meeting

October 28, 1-3 pm ET

We are excited to announce that Pulitzer Prize winning science writer Ed Yong  will be the guest speaker at our Annual Meeting this fall.

Yong's coverage of Long COVID and ME/CFS in The Atlantic has been groundbreaking, and has shaped and changed the public narrative around these illnesses.

More details coming soon!

Yong published his most recent article on July 27: "Fatigue Can Shatter a Person." With the tagline, "Everyday tiredness is nothing like the depleting symptom that people with Long COVID and ME/CFS experience" this article explores post-exertional malaise — the signature trait of ME/CFS — and two potential explanatory pathways.

If you missed our kickoff event, you can learn more about MassME's history by watching the recording.

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

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

NEW TIMES! Join us on Monday nights @ 7 pm and Wednesday afternoons @ 3:30 pm! 

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.

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

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.

Bringing Research to Boston and Beyond with StudyME

@Open Medicine Foundation’s StudyME registry is helping expedite research for ME/CFS, Long COVID, Fibromyalgia, and other post-infection illnesses by connecting interested participants with the researchers who conduct studies in these areas. Stand up and be Counted! 

Join the All of Us Research Program at NIH

The NIH is enrolling 1 million people in the U.S. in its All of Us Research Program aimed at building one of the most diverse health databases ever. This database will be used by researchers to study how biology, lifestyle, and environment affect health, and could potentially lead to treatments and cures for diseases.

It is particularly important that people with ME/CFS, Long COVID, post treatment Lyme disease, POTS, and dysautonomia sign up so that we are well represented in the database.

You can learn more and sign up here. The study lasts for 10 years and includes health surveys, possibly sharing your electronic health record, and possibly providing biological samples (blood or urine). You can say no to any part of the study.

NIH ME/CFS Research Roadmap Webinar Series Kickoff – August 25, 2023

The first ME/CFS Research Roadmap webinar will take place on August 25, 2023, from 10:00 am – 2:00 pm ET. Focusing on how ME/CFS impacts the nervous system, presenters will describe current research, knowledge gaps, and future research opportunities in this area. There will be Q&A sessions during which attendees can ask questions and contribute ideas. Researchers, clinicians, advocates, those living with ME/CFS, and anyone invested in or impacted by ME/CFS are encouraged to attend. The webinar will be recorded and posted online after the event for future viewing. Please visit the webinar series event page for details about the agenda and speakers, and upcoming webinars. Registration information is forthcoming. 

Looking For Information on Current ME/CFS Research? 

Check out MapME/CFS.  This online search tool provides access to research results across many biological disciplines from studies that are focused on advancing our understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).

CONGRATULATIONS to ME/CFS Advocates in Minnesota!

A group of dedicated advocates helped to craft legislation that establishes a comprehensive, statewide monitoring and support program for individuals suffering from Long COVID, ME/CFS, Dysautonomia, and POTS.  The legislation is included in the state's 2023 Omnibus Health Care bill, signed by the Governor and implemented as SF2995, Section 50: Long COVID and Related Conditions Assessment Monitoring. (Pg 213)

The legislation is supported by funding for the Minnesota Department of Health in the order of $3.14M per year for each of the next 4 years. 

New Clinic Takes Radical Departure From the Norm - and we should benefit

The Metrodora Institute is a new medical and research center in Salt Lake City focusing on patient care and advancing treatment options for neuroimmune axis disorders like ME/CFS, Long COVID, and POTS. The intent is to provide a new multidisciplinary blueprint for healthcare, and to embed research and discovery directly into the patient care process. Read full article here and watch the video here.

Art Mirin at the NAS Workshop on Chronic Conditions in Women

Chronic debilitating conditions are a significant burden on the health of women, in part because of longer life expectancies. The National Academies of Sciences, Engineering, and Medicine convened a committee of experts to review the literature on chronic debilitating conditions in women; describe current knowledge and gaps in evidence; and provide a research agenda for the future. The committee will hold its third public meeting virtually on August 9, 2023 from 12—3 p.m. ET. Invited speakers will explore various topics relevant to understanding chronic conditions in women, including prevention, biological and social determinants, multimorbidity, research funding landscapes, research gaps, and future considerations. The meeting will also include a panel on patient lived experiences. Listen to the whole thing or tune in at 1:50 PM (ET) to hear our friend Art Mirin, the expert on unequal funding for women's health. Register here.

Energy Impairment, Not Just Fatigue

Thanks to Ed Yong for making us aware of Chronic Illness Inclusion, a British organization dedicated toward “a world in which our experience of disability is heard, believed, and understood, our rights as disabled people are upheld, and our lives have equal value”.

Check out this fascinating article on what they have termed “Energy Limiting Chronic Illness”.

In Case You Missed It: Video Recording of CDC Stakeholder's Call

A webinar recording of the May 17, 2023 CDC Stakeholder's Call has been posted. The call featured a presentation titled, “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-like Illness Following COVID-19 in a Large Integrated Health System: Findings from the STOP ME/CFS Study” by Dr. Jacek Skarbinski, Department of Infectious Diseases, Kaiser Oakland/Richmond, California. It also featured program updates from Dr. Jennifer Cope and a question-and-answer session with Drs. Skarbinski, Unger, and Cope. 

Have you seen a doctor, or other healthcare provider, that you would recommend to another patient? 

Finding a physician or other healthcare provider knowledgeable about these illnesses is, next to the illness itself, one of the most daunting tasks a patient and family can face.

MassME has compiled a database, largely based on patient reports, of physicians and other healthcare providers that we can recommend to patients for illness evaluation and treatment.

We need your help in identifying physicians/medical providers – both PCPs and medical specialists, as well as other healthcare professionals who will do their best to evaluate and treat these illnesses. 

If you saw a doctor who was biased or non-responsive you also could let us know, so that we could avoid referring to him or her.

Click here for our Provider Recommendation Form. All submissions are anonymous.

On behalf of patients and our Association –  thank you!

Would you like to be featured in a Spotlight?

We feature physicians, researchers, patients, caregivers, and those who help people who live with ME/CFS and FM.

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