February 2024

In this month's newsletter:

• Meet our 2024 Board of Directors
• Upcoming Events
  
  • Sunday Conversations
  • Young Adult Support Group - Winter Session
• Volunteer Opportunities
• Senate HELP Committee
• Newsworthy Events and Links
• Spotlight: Ellen Breslin

Congratulations to our new 2024 Board!

President:  Susan Buckley, B.E.S.

Treasurer: Leah Williams, Ph.D. 

Clerk: Kathryn Ruhf, M.Ed., M.S.

Board Member: Patricia Woods, R.N., M.S.N.

Board Member: Hayla Sluss, Ph.D. 

Past President: Phil Chernin, B.S.

Click here to read the bios

Please join us for small group discussions on living with ME/CFS AND common co-morbidities or other serious illnesses. We will divide into groups based on age/stage of life: Young Adult; Adult; Seniors/Aging; Parent, Caregiver, or Ally; wherever you think you fit! This topic was suggested by several respondents in our recent survey!

Registration closes one hour before the program begins.

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 - Winter 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.

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.

There is one registration for the entire session.  Once registered, you are welcome to attend as many meetings as you like.

Make an impact!

We are seeking volunteers to help organize a medical symposium on ME/CFS and infection-associated chronic illness this fall. Help us line up speakers, organize the hybrid in-person and virtual arrangements, and get the word out!

We are also looking for people to join a MassME@40 team pursuing broader initiatives in provider outreach this year. 

If you would like to help, please contact us.

Senate HELP Committee holds Hearing on Long COVID

On January 18th, the Senate Committee on Health, Education, Labor, and Pensions (HELP) held a  full committee hearing, Addressing Long COVID: Advancing Research and Improving Patient Care. A recording is available, as well as the written testimony of the patient and expert witnesses. ME was mentioned multiple times by both patients and experts as an associated illness that can provide a basis for understanding LC and existing potential treatment avenues, but also as an illness that has suffered from severely inadequate research funding. One of the expert witnesses, Dr. Zayed Al-Ali, called for a new NIH center for infection-associated chronic illness as a way to focus and adequately fund research attention. It's heartening to see supportive responses from our New England Senators, long-time ME champion Ed Markey (Massachusetts), HELP Committee Chair Bernie Sanders (Vermont), and Maggie Hassan (New Hampshire).

NIH RECOVER Seminar, February 13, 12 - 1:30 PM

The NIH RECOVER study holds regular virtual seminars to share research findings with the broader community, including other researchers and the public. The next seminar, Understanding Neurological Manifestations of PASC and Cerebral Vascular Injury, is Tuesday, February 13 from 12 to 1:30 PM (ET). Register here.

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NIH Seeking Feedback on ME/CFS Research Roadmap Priorities

You can submit public comments on the NIH ME/CFS Research Roadmap Priorities until March 8, 2024. Comments may include input on how the draft research priorities could be enhanced, new research questions that could be included, or challenges that the current research priorities may face.

NIH held a series of webinars on 8 different research topics and developed a set of research priorities based on the discussion. You can find the 8 research areas here and the videos of the webinars here. To submit comments, click on a research topic then click on Submit Your Idea at the top. You will need to create an account with NIH to submit comments. To see other submitted comments, click the Ideas tab right below the banner.

Measuring Disability at the Census Bureau

The US Census Bureau is proposing a major change in the way it measures disability that could significantly reduce the count of disabled persons. Join the Urban Institute's Disability Policy Initiative and Disability and Philanthropy Forum for a discussion on the need for an accurate count of disabled people in the US and the policy implications of the Census Bureau's changes. Register for the meeting here, and read a report from disability scholars on the proposed changes here.

Presentations by Dr. Peter Rowe on February 9 and 16 on the latest ME/CFS Research

Dr, Peter Rowe, Johns Hopkins University, will give virtual seminars on Orthostatic Intolerance and Brain Blood Flow on Friday, February 9, 2-3 PM (ET) and on Biomechanical Issues, Neuro-anatomic Problems and Mast Cell Activation on Friday, February 16, 2-3 PM (ET). Register here. The presentations are organized by RemissionBiome.

New UMass Chan Study on Long COVID and ME/CFS Biomarker and Potential Treatment

UMass Chan Medical School researchers Liisa Selin, MD, PhD, and Anna Gil, PhD, have just published a paper on similarities in immune system dysfunction as a potential biomarker among people living with long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The paper also reports on a small study with a novel treatment that showed improved immune markers and a decrease in reported symptoms. Read the UMass Chan press release here.

Spotlight on AMMES (American ME and CFS Society)

AMMES continues to run one of the few programs that provide direct support to individuals. Their Financial Crisis Fund distributed more than $60,000 in 2023 to severely ill ME/CFS patients for housing, food, medical expenses and other basic needs. AMMES also maintains a list of recommended doctors and treatments based on reader input,as well as a list of clinical trials and summaries of current research. You can subscribe to the free  AMMES newsletter here.

Patient Centered Outcomes Research Institute (PCORI) Seeking Member for Advisory Panel

The  Patient Centered Outcomes Research Institute (PCORI) studies the effectiveness of clinical research. They have 5 advisory panels and are looking for new members including patients with lived experience. They are particularly seeking someone with Long COVID experience. Applications are due by March 29, 2024 and there will be a town hall on February 14 to learn more.

Important INIM Updates

News from the Institute for Neuro-Immune Medicine (INIM, Nova Southeastern University, Florida)

• Watch the latest episode of the Hope & Help for Fatigue and Chronic Illness podcast focusing on how external factors (mold, environmental toxins, microbiome) can play into chronic illness.
• Are you in South Florida and suffering from long COVID? Join the COVID-19: Understanding the Post-Viral Stage (COVID UPP) research study at INIM. The study consists of online surveys every 3 months for 3 years to track symptoms and disease progression. Take the survey here to test eligibility.
• Save the date for this year’s INIM ME/CFS Conference - Talks That Move The Needle! This conference will be held at the NSU Innovation Center on May 10th, 2024 from 10:00 AM - 5:00 PM and will be accessible virtually. The conference will consist of a variety of presentations, panel discussions, and breakout sessions geared for researchers, clinicians and people with ME/CFS. The conference will also highlight research on Gulf War Illness.

Dysautonomia Advocacy Day  

Dysautonomia International invites US patients, family members, clinicians, and allies to join us on Tuesday, March 12, 2024 for Dysautonomia Advocacy Day in Washington, DC! Join hundreds of advocates as we meet with members of Congress to raise awareness about dysautonomia and advocate for the needs of our community!

Details an be found here.

Advocacy Week 2024 (Virtual): April 15th to 19th, 2024

Register now for Solve ME's annual Advocacy Week. Senate Advocacy Day is Tuesday, April 16th and will be virtual this year. House Advocacy Day is Thursday, April 18th and will be virtual. Advocacy Week will also include an advocacy training day and opportunities for community connection.

"My symptoms seemed to match with a diagnosis of ME/CFS rather than depression."

For almost 20 years I have struggled with fatigue, cognitive dysfunction, and other symptoms which, until several years ago, were attributed to depression and anxiety, although these diagnoses never seemed accurate to me.

Looking back, I can pinpoint the changes in my health to fourth grade, when over a period of about two years I stopped doing competitive gymnastics, competitive softball, and horseback riding, all sports which I loved doing. Over the years, my condition has slowly deteriorated from there with short periods of slight remission.

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