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Notes from our Inbox

This is a recording of the Annual Meeting of the Massachusetts ME/CFS & FM Association on Sunday, October 26, 2025 which includes a talk by research scientist Beth Pollack. Please visit https://massmecfs.org/events/annual-meetings/annual-meeting-2025/ for more information about the event.

Beth Pollack discussed aspects of ME/CFS, Long COVID, and co-occurring conditions that profoundly impact patients yet remain under-researched and frequently overlooked. She provided an overview of the current research landscape and findings, shared insights from emerging research at MIT, and highlighted new collaborative projects with her colleagues that are advancing our understanding of these topics.

Focus areas included common comorbid conditions; hypermobility and connective tissue damage; spinal pathologies; environmental sensitivities; reproductive conditions, and more. Her talk synthesized what is currently known, identified critical gaps in understanding, and illuminated the next steps and opportunities for more comprehensive research that can inform clinical care.

Beth Pollack is a Research Scientist in the Department of Biological Engineering in the Tal Research Group at MIT, where she leads research on ME/CFS and the overlaps among infection-associated chronic illnesses. Her work focuses on understudied pathologies that significantly impact patients, with the goal of accelerating knowledge, clinical research, and treatments. She is currently a collaborator on four clinical studies on infection-associated chronic illnesses, and also serves on two NIH RECOVER working groups focused on Long COVID therapeutics and clinical trial design.

Beth was chair of the NIH ME/CFS Research Roadmap subgroup on Less Studied Pathologies, was previously a senior researcher at Harvard, and in 2024 was named a United States Leader by the Obama Foundation. Committed to increasing understanding and awareness of chronic illness, she has been interviewed by The New York Times, The Atlantic, The Guardian, NPR, and other publications.

If you found this recording, or others on our channel, helpful, please support MassME: https://massmecfs.org/donate/

Chapters
0:00:00 Welcome - Creighton Ward
0:03:37 Annual Report - Susan Buckley
0:12:36 Introducing Beth - Phil Chernin
0:14:11 Main Presentation - Beth Pollack
1:25:15 Audience Q&A - Beth Pollack & Leah Williams
1:36:34 Wrap-up - Creighton Ward

MassME 2025 Annual Meeting: Less Studied Pathologies across ME and Related Illnesses - Beth Pollack

The Boston Waterfront 5K fundraiser was a huge success! The weather smiled on us this year, and everyone had a great time before the race, on the course, and celebrating afterwards.

Perhaps most importantly, we exceeded our fundraising goal of $20,000. Team MassME was the second highest overall fundraising team at the event. And five of the top ten individual fundraisers were on Team MassME, including our own Phil Chernin in the top position!

Enormous thanks to all participants: team members, those who came out to cheer, those who got the word out and cheered from home, and of course, all 200 generous donors.

THANK YOU!

2025 Boston Waterfront 5K Recap

May 12th is International ME Awareness Day, also known as World ME Day.

International ME Awareness Day provides an opportunity to raise public awareness of ME/CFS and those living with the illness.

MassME arranged for several bridges in Massachusetts to be illuminated in blue on the night of May 12.

In Boston and Cambridge, the Zakim Bridge and the Longfellow Bridge were in beautiful blue lights. Also lit was the Burns Bridge in Worcester, and the Fore River Bridge in Quincy/Weymouth.

#MECFSAwareness, #GoBlueforMECFS, #GoBlueforME

May 12, 2025 Bridges In Massachusetts Light Up Blue for World ME Day

In this edition of Sunday Conversations, Sallie Rediske, MPT, provides a casual yet informative exploration of the functional implications of ME/CFS and hypermobile Ehlers-Danlos Syndrome (hEDS). She talks about the ways fatigue affects people with both ME/CFS and hEDS, highlighting the shared experiences and challenges faced in daily life and how to navigate the demands of both ME/CFS and hEDS. She also provides practical strategies to address mechanical issues associated with hEDS within the context of ME/CFS. Craniocervical instability (CCI) and occult tethered cord will also be included in the discussion as they are significant coexisting concerns for many with ME/CFS and hEDS. The presentation was followed by questions from the audience.

This program is part of “Sunday Conversations with MassME,” a speaker series with discussion on a wide variety of topics. For more information on this and future Sunday Conversations presentations, please check out https://www.massmecfs.org/sunday-conversations

Chapters
0:00:00 Introduction
0:01:49 Sallie Rediske Presentation
0:51:20 Audience Q&A

Resources from the presentation
* The mast cell disease society - "Great information for mast cell issues for both patients and providers" https://tmsforacure.org/
* Bateman-Horne page on rehab professionals - "Excellent resource for understanding PEM for both patients and providers" https://batemanhornecenter.org/providers/mecfs/diagnosing-managing/rehab-professionals/
* Histamine elimination diet - "Dietary guidelines that can be used to start a low histamine diet and to initiate conversations with healthcare provider" https://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf
* 2017 Ehlers-Danlos diagnostic criteria for hEDS https://www.ehlers-danlos.com/wp-content/uploads/2019/09/hEDS-Dx-Criteria-checklist-1-Fillable-form.pdf
* Workwell Foundation PEM Timecourse https://workwellfoundation.org/wp-content/uploads/2023/01/WW-PEM-Timecourse.pdf
* Bibliography for the presentation https://drive.google.com/file/d/1jMYuK0PJR_zGWgMiO5NRBKZWAGUrx_6e/view?usp=sharing

Sunday Conversations April 2025 - ME/CFS and hEDS with Sallie Rediske

Requests and responses that we received from our community this year.

Notes from our Inbox

You may find it easy or challenging to relate to each of your doctors and other providers in ways that help you get what you need from them. Both doctor and patient contribute to that relationship, usually in different ways, based on our personalities, roles and expectations. This presentation and discussion aimed to offer you some tools that can help make that relationship both effective and fulfilling. The discussion was led by Ruth Axelrod, who drew on her career in healthcare and academia, as well as her personal health journey, to facilitate conversation.

This program is part of “Sunday Conversations with MassME,” a speaker series with discussion on a wide variety of topics. For more information on this and future Sunday Conversations presentations, please check out https://www.massmecfs.org/sunday-conversations

Chapters
0:00:00 Introduction
0:02:01 Ruth Axelrod Presentation
0:46:53 Audience Q&A
1:07:30 Concluding remarks

Sunday Conversations November 2024 - Your Doctor is Human Too! with Ruth Axelrod

This is a recording of a medical education mini-symposium on ME/CFS and Long COVID held at University of Massachusetts Chan Medical School on October 4, 2024.

The symposium, held in partnership with the Massachusetts ME/CFS & FM Association, features three presentations:
* Introduction to ME/CFS, Long COVID, and IACCs: Shared complexity and health inequity. Presented by Hayla K. Sluss, PhD. Dept of Medicine, UMassChan. RECLAIM study lead PI
* ME/CFS and Long COVID: Clinical Considerations from a Phase Perspective. Presented by Patricia Fennell, MSW, CSW-R. President and CEO of Albany Health Management Assoc. Inc.
* Unmasking PEM: Assessing disability and its pathophysiology using the 2-day Cardio-Pulmonary Exercise Test. Presented by Staci Stevens, MA. Founder of Workwell Foundation, and Todd Davenport, PhD, MPH. Professor, Chair in the Dept. of Physical Therapy, University of the Pacific. Chair, Long COVID Physio.

Chapters
0:00:00 Hayla Sluss - Introduction to ME/CFS, Long COVID and IACCs - Shared complexity and health inequity
0:42:11 Patricia Fennel - ME/CFS and Long COVID: Clinical considerations from a phase perspective
1:44:23 Staci Stevens & Todd Davenport - Unmasking PEM: Assessing disability and its pathophysiology using a 2-day cardiopulmonary exercise test
2:31:21 Staci Stevens & Todd Davenport - Questions from the audience
2:43:09 Hayla Sluss - Conclusion

ME/CFS, Long COVID, and other IACCs: What They Teach Us - UMass Chan Medical School presentation

This is a recording of the Annual Meeting of the Massachusetts ME/CFS & FM Association on Saturday, October 26, 2024 which includes a talk by clinician, researcher, educator, and author Patricia Fennell, MSW, LCSW-R. Please visit https://massmecfs.org/news-events/905-2024-annual-event-a-powerful-paradigm-for-living-with-chronic-illness for more information about the event.

Living with what was then commonly referred to as Chronic Fatigue Immune Dysfunction Syndrome (or its popular pseudonym, “Yuppie Flu”), Patricia had experienced the disbelief, dismissal, fear, and isolation familiar to many of us. Drawing from her professional experience, she developed strategies and solutions for “taking back her life,” and then shared them. In her work as research scientist, clinician, and educator, Patricia describes a powerful paradigm for understanding how ME/CFS challenges one’s very sense of self and role in society and, more importantly, how to go about accepting and managing those challenges. We spoke with Patricia about her experience applying her methods to her clients, her experience teaching other health professionals in a variety of disciplines to use these methods, and how things have changed in the last three decades for those living with ME/CFS.

If you found this recording, or others on our channel, helpful, please support MassME: https://massmecfs.org/donate/

Chapters
0:00:00 Welcome - Amanda Mathiesen
0:05:02 Annual Report - Susan Buckley
0:15:27 Introducing Patricia - Phil Chernin
0:18:52 Main Presentation - Patricia Fennell
1:13:48 Audience Q&A - Patricia Fennell & Phil Chernin
1:49:08 Wrap-up - Amanda Mathiesen

MassME 2024 Annual Meeting: A Powerful Paradigm for Living with Chronic Illness - Patricia Fennell

Dr. Jill Crista is a pioneering naturopathic doctor, best-selling author, devoted educator, and creative innovator. Her superpower is to make complex medical concepts simple and digestible for the average person. In this edition of Sunday Conversations, Dr. Jill spent an hour with us answering our questions about mold illness: diagnosis/symptoms, treatments, and relation to ME/CFS.

This program is part of “Sunday Conversations with MassME,” a monthly speaker series with discussion on a wide variety of topics. For more information on this and future Sunday Conversations presentations, please check out https://www.massmecfs.org/sunday-conversations

Chapters
00:00 Introduction
02:20 Mold in our living situations
17:42 Symptoms of mold toxicity
34:10 Diagnostics and treatments
57:06 Concluding remarks

Sunday Conversations September 2024 - Mold Q&A with Dr. Jill Crista

Slides and other materials from the presentation can be downloaded here: https://massmecfs.org/news-events/66-sunday-conversations/891-sunday-conversations-jun2024

In this edition of Sunday Conversations, we continued our series on comorbidities with a focus on pain. A panel of three presenters from the Massachusetts Pain Initiative (MassPI) presente on the work their organization does to improve the lives of people suffering from pain through knowledge, education, and policy reform. Cindy Steinberg discussed her role in past and current legislative actions, both locally and nationally. Jackie Orent-Nathan talked about pain neuroscience and about solutions that use neuroplasticity to influence the reorganization of neural networks. Michele Matthews focused on medications and provided the "Ins and Outs of Medications for Pain and Symptom Management".

This program is part of “Sunday Conversations with MassME,” a monthly speaker series with discussion on a wide variety of topics. For more information on this and future Sunday Conversations presentations, please check out https://www.massmecfs.org/sunday-conversations

Chapters
0:00:00 Housekeeping
MassPI presentations
0:02:21 Cindy Steinberg: Local and federal advocacy work
0:14:14 Jackie Nathan: Pain neuroscience
0:33:03 Michele Matthews: Medications for pain management
Questions from the audience
0:58:08 Q&A: More about MassPI
0:59:46 Q&A: ME advocacy advice
1:00:49 Q&A: How many patients improve
1:02:41 Q&A: How to find a pain clinic
1:04:57 Q&A: Gabapentin/Neurontin
1:06:10 Q&A: Low dose naltrexone
1:08:45 Q&A: MCAS-friendly compounded medicines
1:10:46 Conclusion

Sunday Conversations June 2024 - Improving Pain Care with the Mass Pain Initiative

Slides and other materials from the presentation can be downloaded here: https://www.massmecfs.org/news-events/66-sunday-conversations/889-sunday-conversations-may2024

A growing body of evidence is linking heritable disorders of connective tissue, such as Ehlers Danlos Variants, with dysautonomia and mast cell dysfunction, which lead to chronic fatigue, brain fog, irritable bowel symptoms and pain syndromes. Dr. Maitland presented a brief review of the diagnosis and relationships of this clinical triad, MCAD, Autonomic dysfunction, and Disorders of connective tissue or hEDS. A better understanding of these relationships should lead to multi-disciplinary clinical therapies to help right this trio of modern day epidemics.

This program is part of “Sunday Conversations with MassME,” a monthly speaker series with discussion on a wide variety of topics. For more information on this and future Sunday Conversations presentations, please check out https://www.massmecfs.org/sunday-conversations

Chapters
0:00:00 Housekeeping
0:01:24 Anne Maitland Presentation
0:41:54 Audience Q&A
1:04:37 Conclusion and next month's talk

Sunday Conversations May 2024 - Are you M.A.D.? with Anne Maitland

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