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Sunday Conversations July 2026 |
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Community Conversation Temperature Management Challenges Sunday, July 19, 2026 4:00 pm ET on Zoom |
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It's hot out there! But managing temperature is a daily challenge all year long for many with ME/CFS, Long COVID, and dysautonomias. A dysregulated autonomic nervous system can cause two common symptoms. Thermostatic instability brings fluctuations of body temperature throughout the day, or unstable internal weather. Heat and cold sensitivities bring an inability to adjust to fluctuations in external temperatures, or intolerance to external weather.
This month, please join us for a community conversation about practical methods for managing temperature, both internal and external. Bring your curiosity and your own experience, bring recommendations for methods and devices for managing the heat and the cold, or just bring your notepad to write down helpful tips from others. Let's share our hard-earned weather wisdom.
Sunday Conversations is a free program and all are welcome!
Community Conversation meetings are not recorded. Useful links and resources will be shared on the event page after the meeting. |
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Did you miss our June meeting on Pacing? Community Conversation events are not recorded but here are some resources to help with "Managing Your Energy Envelope". |
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We are excited to announce that our Millenial/Gen Z Meet Up Group is growing! |
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We welcome young adults from the entire Northeast region. |
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Boston Waterfront 5K Walk / Run / Roll |
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MassME will participate again in the wonderful Boston Waterfront 5K event on September 12. This year we have options for in-person or virtual participation. We can also find someone to run on your behalf.
Team MassME participates in this event to raise funds for our programs and increase public awareness of ME/CFS and Long COVID. The course is beautiful, and telling our stories in this context can be powerful. Also, we have a lot of fun! So check your email in the next few days for an invitation to participate. Please join us!
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Unbound: A Dance Film by Sarah Nesson |
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MassME members will be familiar with the work of Sarah Nesson. She presented her previous works, Broken Mishkan and Body of Water, at Sunday Conversations events. Her new film, Unbound, will premiere online on Wednesday, July 29th, at 6:30 pm. Register here, and learn more about the film in our Spotlight article below.
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Severe ME Artists Project 2026 |
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MEAction announces their Severe ME Artists Project 2026 to showcase artwork by those within the severe ME community and to recognize Severe ME Day on August 8. Writing, photography, drawing, video (under 2 minutes) or any other medium is welcome, including art created before one became severe.
Email sMEartistsproject@meaction.net for submission instructions. The deadline is July 24.
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Take a Deep Dive Into the Work of the Selin Lab and Collaborators |
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Liisa Selin, PhD (UMass Chan) and her collaborators, Anna Gil, PhD (UMass Chan), Roshan Kumar, PhD (HiFiBio) and Ayano Kohlgruber, PhD (Boston Children’s Hospital), are making progress uncovering the links between the immune system and ME/CFS and Long COVID. Solve ME provided the initial seed funding via a Ramsay Grant. Cort Johnston at Health Rising has written a summary of the current results and history of this project based on a Solve ME webinar in April.
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RECOVER Webinar on Clinical Trials |
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Join NIH's RECOVER (REsearching COVID to Enhance Recovery) program for a webinar on clinical trial results in pursuit of Long COVID treatments, focusing on neurological and autonomic symptoms, on July 14 at 12:00 pm ET. Panelists will discuss how the trials were designed, how the specific interventions were chosen and how the community was engaged in the process. Register here.
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That WIRED Article |
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Last month WIRED Magazine published an article, "The Painful Truth About Long COVID" on mind-body practices and neuroplasticity as treatments for Long COVID. There has been strong community backlash to Alan Levinovitz's article, and public responses include an excellent rebuttal by Todd Davenport republished by The Sick Times, and a long post by David Tuller in Virology Blog. MassME is preparing a response.
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Celebrate Disability Pride Month Through Storytelling |
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Join MEAction's Narrative Working Group for a Writing Workshop to celebrate Disability Pride Month on July 9 at 2:00 pm ET. Writing prompts will be inspired by disability pride, identity, joy, resilience, and community. All are welcome to participate, whether you are a long-time writer or have never shared your words. Register here.
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Dysautonomia International Conference |
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Dysautonomia International is holding their annual conference in Houston, TX from July 9 to July 12. Join researchers, health care professionals, patients, and caregivers to learn about the latest research, diagnostics, and treatments. Find the conference program here. You can attend in person or via livestreaming (registration fee $150, registration link).
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Find a Patient Advocate through Solace |
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Patient Advocates provide support and advocacy for navigating healthcare, insurance, disability applications, and access to services. They can coordinate care, organize records, appeal denials, and follow up until a problem is solved. Solace is a private for profit company that can match you with a patient advocate. Most or all of the cost is covered by Medicare or many Medicare Advantage plans. Contact Solace here.
Please note that this is for information only and not an endorsement by MassME.
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Sara Nesson is an artist and storyteller, whose works A Body of Water and The Broken Mishkan beautifully portray what it means to come to terms with chronic illness. Once an active kayaker, long distance swimmer, and dancer, Nesson brings her background as a dramatist to her monologues exploring the loss, limitations, and reconciliation of a life with ME/CFS.
Now in a new project, Nesson not only returns to dance but to deeply collaborative work. Her new short film, Unbound, follows a thread of movement from one individual to another. Each of the people in the film live with ME/CFS and/or Long COVID; some are trained dancers while others are not. The participant’s contributions are uniquely their own, but all wordlessly express both constraint and vitality.
In a conversation with us about this extraordinary film, Nesson said that she had long been yearning to tell a story about chronic illness without words, simply through bodies.
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Massachusetts ME/CFS & FM Association is a 501c3 non-profit registered in the state of Massachusetts. |
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Massachusetts ME/CFS & FM AssociationPO Box 390459Cambridge, MA 02139-0459
617-471-5559 contact@MassMECFS.org |
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© ::Massachusetts ME/CFS & FM Association::. All Rights Reserved |
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https://massme.monkeypod.io/mailcoach/webview/campaign/a22f8491-17f7-43d0-bb65-f02ad184fc60 ::unsubscribeLink:: |