The Massachusetts ME/CFS and FM Association (MassME) seeks a planning consultant. After more than 40 years of service we stand at a crossroads. The consultant will help us assess our path for evolution and sustainability. They will help us evaluate: 

• The current service and education landscape for ME/CFS, Long COVID, and other Infection-Associated Chronic Conditions (IACCs) in Massachusetts and nationally
• The most pressing needs of our ME/CFS and related communities 
• Opportunities for partnerships and collaborations with aligned groups
• MassME’s unique brand and value, and current and potential contributions 
• Funding opportunities

The position is 100 hours over six months for a total of $10,000. The start date and schedule are flexible. Target completion is December 2026. 

Key responsibilities: Investigation and research, likely to include interviews and a survey; evaluation and planning sessions; findings analyzed and reported to the Board along with recommendations. Consultant will be guided and supported by MassME board and staff. 

Qualifications: Expertise in the patient advocacy nonprofit space; background/experience in a related health care field; experience with strategic analysis, organizational planning, and building collaborations; strong communication skills. Persons with lived experience or familiarity with ME/CFS, Long COVID, or other chronic illnesses preferred.

MassME is a patient-led nonprofit organization that supports people living with ME/CFS and related conditions by connecting them and their families to supportive resources and each other, and by educating and advocating to improve and expand the ME/CFS healthcare and social service infrastructure in Massachusetts.

Please send your letter of interest and resume by May 31 to kathrynr@massmecfs.org. Questions via email are welcome. 

Sunday Conversations May 2026

Wireless Risks & Safer Technology Solutions

Sunday, May 17, 2026

4:00 pm ET on Zoom

Cece Doucette will be discussing the health effects of using wifi, cellular phones, and smart meters. National Grid and Eversource are installing smart meters throughout the Commonwealth of Massachusetts. Telecommunications companies are installing wireless antennas in residential and commercial areas. Other states are doing the same and have passed legislation to opt-out of smart meter installation.

"Smart" meters for electric, solar, water, gas and propane are being installed in residential and commercial areas. Children, pregnant women, the elderly and anyone with an existing health compromise often experience symptoms of Electromagnetic Radiation (EMR) Syndrome first, but many previously healthy ratepayers are affected after smart meters are installed.

Please join Cece Doucette to learn the science, symptoms, medical recommendations, and what you can do to protect your home, loved ones and pets!

Sunday Conversations is a free program and all are welcome.

This program will be recorded for later viewing.

We are excited to announce that our Millenial/Gen Z Meet Up Group is growing!

We welcome young adults from the entire Northeast region.
MA, ME, NH, VT, RI, CT, NY, NJ, and PA!

International ME Awareness Day

May 12th is International ME Awareness Day. Established in 1993, the day honors the lives of those affected by ME/CFS. The date was chosen for its association with Florence Nightingale, who spent the last fifty years of her life with an ME-like illness triggered by a bacterial infection. By marking this day we can raise public awareness of ME and associated illnesses and advocate for informed clinical care and increased research funding. 

If you are looking for actions to take to mark this year's Awareness Day, here are a few suggestions..

• Use social media to raise awareness. Post your own story or amplify MassME's posts.
• Join #MEAction's Frail and Furious campaign to help protect our community's access to Medicaid.
• If you are a Massachusetts resident, join an action to document how the lack of medical education is harming us. Send advocacy@massmecfs.org an email with 3 to 5 sentences describing the harm you or someone you know has suffered because a doctor or other health care provider did not have adequate knowledge about ME/CFS. We'll send this on to the Massachusetts Dept of Public Health's Bureau of Healthcare Safety and Quality, with the eventual goal of getting ME/CFS on national medical licensing exams.

Receive Updates from the NIH ME/CFS Information List

Management of the NIH ME/CFS information list to receive updates on ME/CFS research, news, and telebriefings is moving to RTI International. To continue receiving updates, or to subscribe, click here.

National Listening Session on New Rule for Home and Community-Based Care

The Centers for Medicare and Medicaid Services is holding a listening session on Tuesday, May 19 at 1:30 pm ET on a new rule (effective January 2028) that would allow states to provide home and community-based care (HCBS) without first requiring a determination of a need for institutional level care. You can provide written comments before or after the listening session and/or spoken comment during the session. More information is available here including an informational bulletin (see page 21). Click here to register.

PolyBio Spring Symposium on Long COVID Research

The PolyBio Spring 2026 Symposium, a free webinar with updates on Long COVID and related disease research from the research consortium, will take place Friday, May 22 from 11:00 am to 6:00 pm ET. Register here.

International Conference on Multiple Chemical Sensitivity

The Environmental Health Association of Quebec is hosting a free, virtual conference on multiple chemical sensitivity (MCS), a common comorbidity with ME/CFS, on May 7 and 8. Day 1 focuses on the evolving scientific and clinical understanding of MCS and Day 2 focuses on practical action. Learn more here and register here.

New Facebook Group for Fibromyalgia Patients

The Fibromyalgia Support Network (Canadian-based but with a global reach) has created a public Facebook group. Join here.

LIFT Trial

The LIFT Trial is a double-blind, placebo-controlled investigation of pyridostigmine (aka:Mestinon) and low dose naltrexone (LDN)

Time required: 3 months, 3 onsite visits, 4 virtual visits 

Study tasks: sub-maximal exercise test(s), biweekly questionnaires and brain games, blood draws

You may be eligible to participate if:

• You are male or female, between 18 and 75 years of age (inclusive)
• You meet Canadian Consensus Criteria (CCC) for diagnosis of ME/CFS and demonstrate
• orthostatic intolerance
• Your symptom onset at least 6 months before enrollment
• You can adhere to the study requirements for the length of the study
• You have a functioning smartphone

You can contact the study coordinator Johanna Squires at jsquires1@bwh.harvard.edu to learn more. 

CONTACT US

Massachusetts ME/CFS & FM Association is a 501c3 non-profit registered in the state of Massachusetts. 

Massachusetts ME/CFS & FM Association

PO Box 390459

Cambridge, MA 02139-0459 

617-471-5559  contact@MassMECFS.org

© ::Massachusetts ME/CFS & FM Association::. All Rights Reserved
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