November 2023

In this month's newsletter:

• Recording Available! ME/CFS: Changing the Narrative
• Upcoming Events
• Newsworthy Events and Links
• Spotlight: Melissa Kulig
• Make Your Mark with MassME

Hundreds from around the world attended our Annual Event with Ed Yong!

The video recording, slides, and other resources are available now.

To sign up for Ed's newsletter, click here.

For a full list of Ed's articles, click here.

What Sociology and the Illness Narratives Can Teach Us About Living with Chronic Illness

Sunday, November 19, 2023, 4:00 P.M. ET

Helen McGunnigle is a graduate of Hampshire College where she studied pre-medical sciences and conducted an ethnographic study of college students living with contested chronic illness (including chronic or post-treatment Lyme disease syndrome, ME/CFS, and fibromyalgia) for her senior thesis.

In this Sunday Conversation, Helen will highlight the findings from this research project, exploring the early histories of these illnesses and what exactly makes them so contested. Following this discussion, she will lead a conversation on the impacts of living with chronic illness.

A recording will be available after the event.

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 - Fall Session

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 Fall 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.

NIH NINDS Webinar on ME/CFS Research Roadmap: Immune System, November 30, December 8, and January 5

The National Institute of Neurological Disorders and Stroke (NINDS) at NIH is holding a series of webinars to explore the current state of research on ME/CFS, discuss knowledge gaps, and suggest future research opportunities.

The next one is on Chronic Infections and will take place on Thursday, November 30th from 11:00 AM to 3:00 PM (ET). Hear updates from Dr. Michael Peluso, Dr. Maureen Hanson, Dr. Anthony Komaroff, and Prof. Simon Carding. The webinar is open to the public and will provide the opportunity to ask questions and make comments. Register here. 

Also mark your calendar for December 8th when Dr. Paul Hwang will present his groundbreaking research on a protein that disrupts mitochondrial functioning and is found in ME/CFS patients. Register for the December 8th webinar here.

Dr. Beth Pollack at MIT will be presenting on Less Studied Pathologies at the January 5th webinar. Register for January 5th here.

Agendas for December 8th and January 5th will be posted soon.

Study of Brain Blood Flow in Severe ME/CFS Patients

Michael VanElzakker at General Hospital/Harvard Medical School is conducting a functional magnetic resonance imaging (fMRI) study of blood flow in the brain. They are looking for ME/CFS patients as well as healthy controls who are related, or live with them.

See the flyer for more information, including compensation. If interested, email HBUES@mgh.harvard.edu.

For our readers near New York City:
Mount Sinai ME/CFS Blood Draw Study will do home blood draws

Dr. Putrino at Mt. Sinai and Dr. Iwasaki at Yale have added an ME/CFS cohort to their study titled "Identifying the immunological signatures associated with post-acute COVID-19 syndrome". They are seeking participants who were diagnosed (or had a suspected diagnosis) with ME/CFS before 2020 and healthy controls.

They are interested in identifying the immune response via immunological signatures associated with the following populations: Long Covid, healthy controls, Covid-recovered controls, Vaccine Injury, and ME/CFS. This is done through blood and saliva sample collection. The sample collection can be done at Mt. Sinai or at home within a 50 mile radius of New York City. If you are interested in participating, please contact Mackenzie Doerstling at PRcovid@MountSinai.org.

Open Medicine Foundation has announced their first clinical trial: The Life Improvement Trial (LIFT)

This is a randomized, double-blind placebo trial that will investigate two particular drugs: Pyridostigmine (commonly known as Mestinon) and low-dose naltrexone (LDN) separately and together as a combination. The primary focus is to assess the effectiveness of these drugs in reducing symptoms like brain fog, fatigue, post-exertional malaise, and postural orthostatic tachycardia syndrome (POTS).

David Systrom, MD, and Jonas Bergquist, MD, PhD are the lead investigators and will be recruiting from their patients in the Boston area as well as participants who have signed up through OMF's StudyME as needed. 

This trial is planned to start before the end of the year. We will publish more information when the trial begins recruiting patients.

"Everyone gets tired now and again, but this felt as if my limbs were made of lead."

It happened in the aisle of canned vegetables.  Normally I zoom through this aisle and I despise canned vegetables, but on this day in September of 2017, it felt like something was pushing my cart toward me from the front.  I stopped and assessed that I needed to lay down as soon as possible, which wasn’t a good idea in the middle of a grocery store.

I decided to check out even though I hadn’t finished my shopping.  Feeling okay as I carried my bags of groceries to my apartment building I assumed nothing was wrong.  My 3rd floor walk up was a challenge for all the tenants as there are many short stairs in the old building.  But as soon as I entered my kitchen and closed the door, I landed on the floor, fruit, packages and frozen meals scattering all over the floor.  As I laid there on my stomach watching my microwave dinners melt I realized that this had never happened before.  Everyone gets tired now and again, but this felt as if my limbs were made of lead.

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

Do you love Sunday Conversations?

Would you like to help plan Sunday events in 2024?

Our wonderful Sunday Conversations team is looking for interested people to participate in planning and producing these monthly events. We are already talking about new approaches and topics for the coming year. If you have ideas and would like to give back to the community we are looking for YOU! You don’t have to live in Massachusetts – our team currently has members from California and Pennsylvania, as well as Massachusetts.

We meet on the 2^nd and 4^th Thursdays of each month at 5 pm ET, and produce an event on the 3^rd Sunday afternoon of most months. Tasks are varied: contacting and working with potential speakers, publicity/writing, technical (running Zoom, creating/updating web pages, posting video), creating graphics, hosting/moderating events, and making sure that everything gets done on time! If you want to use or expand your skills, this is a great team to join!

If you are interested in finding out more, or in trying this out to see if it might be a good fit for you before making a commitment, we invite you to sit in on planning for our November meeting. Contact Us and someone will get back to you promptly.

We look forward to meeting you!

The Sunday Conversations team

Patients, caregivers, advocates: join the MassME Board! 

You can help lead our Association and make a difference in the lives of thousands of people in Massachusetts and beyond. Board service is rewarding—you learn from and bond with others as you contribute to the organization’s mission. We seek a diverse board of people with passion and a broad range of professional and personal experiences.  Curious? Click here for more information.