USA: Massachusetts ME/CFS & FM Association news

They are told that they are suffering from stress; that they are depressed or anxious. The implication is that their condition is psychosomatic; meaning that their emotions are manifesting as physical symptoms. This is a very invalidating experience that adds insult to injury.

It is a lot worse than that. It is adding serious injury to serious injury.
 
https://www.massmecfs.org/news-events/66-sunday-conversations/877-sunday-conversations-feb2024

Massachusetts ME / CFS & FM Association

Sunday Conversation for February:

Small Group Discussions

"Living with co-morbidities or other serious illnesses"

Sunday, February 18, 2024, 4 p.m. Eastern Time [9 PM in Great Britain & Ireland)

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,
or Ally/Caregiver, wherever you think you fit!

This topic was suggested by several respondents in our recent survey!

Register now!

**Registration closes one hour before the event begins, so register now!**



COMING UP!
“Co-morbidity” is a fancy name for a diagnosable condition that can
exist side-by-side with another diagnosable condition.

People diagnosed with ME/CFS, Fibromyalgia, or Long COVID commonly
have other diagnosable conditions as well. It is important to
recognize these, because having additional diagnoses may allow your
health care provider to prescribe additional treatments, and insurance
may cover certain tests or treatments for these conditions.

In our Sunday Conversations series for 2024, we hope to include
programs describing specific co-morbid conditions that are common in
ME/CFS, Fibromyalgia, and Long COVID. You may have already heard of,
or been diagnosed with, some of these co-morbidities. We hope the
information in the next several Sunday Conversations will be useful to
you!

March 17 - Dysautonomia

April 21 - Mold 101

To be continued...
 
Next up in the Sunday Conversations series:

“Dysautonomias 101: More Than Just POTS”

Sunday, March 17, 2024, 4 p.m. Eastern Time

https://www.massmecfs.org/news-events/66-sunday-conversations/881-sunday-conversations-mar2024
Massachusetts ME/CFS & FM Association said:
“Dysautonomias” refers to the generic term encompassing all disorders of the autonomic nervous system.

In this edition of Sunday Conversations, Peter Cariani will give a brief overview of the autonomic nervous system and what can go wrong. He will also describe the role of dysautonomias in ME/CFS, FM, and other chronic conditions, what causes these conditions to be self-sustaining, what medical specialties treat dysautonomias, and add his own thoughts about diagnosis and treatment.

Hayla Sluss, Ph.D., is Moderator and Discussant.
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Registration required. A recording will be available after the event.

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...ore+Than+Just+POTS&iso=20240317T16&p1=43&ah=1
 
ahimsa said:
Next up in the Sunday Conversations series:

“Dysautonomias 101: More Than Just POTS”

Sunday, March 17, 2024, 4 p.m. Eastern Time

https://www.massmecfs.org/news-events/66-sunday-conversations/881-sunday-conversations-mar2024


Registration required. A recording will be available after the event.

Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=Dysautonomias+101:+More+Than+Just+POTS&iso=20240317T16&p1=43&ah=1
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The slides and a recording are now available:
https://www.massmecfs.org/news-events/66-sunday-conversations/881-sunday-conversations-mar2024

https://twitter.com/user/status/1772708803013738557
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Next up in the Sunday Conversations series:

“Improving Pain Care Through Education and Policy”

Sunday, June 23
4 p.m. Eastern Time

https://massmecfs.org/news-events/66-sunday-conversations/891-sunday-conversations-jun2024
Massachusetts ME/CFS & FM Association said:
In this edition of Sunday Conversations with MassME, we will continue our series on comorbidities with a focus on pain. A panel of three presenters from the Massachusetts Pain Initiative (MassPI) will present on the work their organization does to improve the lives of people suffering from pain through knowledge, education, and policy reform.

Cindy will discuss her role in past and current legislative actions, both locally and nationally. Cindy is an advocate for effective pain management as she suffers with chronic pain herself.

Michele, a pharmacist, will focus on medications: "Ins and Outs of Medications for Pain and Symptom Management"

Jackie is an NP and has worked in pain management for over 20 years. Her focus over the last 10 years has been on the neuroscience of pain. She teaches patients with persistent pain about how pain actually works and how to use this knowledge to influence the nervous system to adapt and change. She will talk about pain neuroscience and about solutions that use neuroplasticity to influence the reorganization of neural networks.
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Find the time in your time zone here:

https://www.timeanddate.com/worldcl...ucation+and+Policy&iso=20240623T16&p1=43&ah=1

Registration link:

https://massmecfs.org/component/civicrm/?task=civicrm/event/register&reset=1&id=185

A recording will be available after the presentation.
 
A report from a recent fundraiser where "Team MassME" raised almost $14,000. The link below has photos from the event.

https://massmecfs.org/news-events/8...ccourt-foundation-s-2024-boston-waterfront-5k
Massachusetts ME/CFS & FM Association said:
The 5K Walk / Run /Roll at the Boston Waterfront was great success. There was great team spirit and lots of laughs among Team MassME participants on race day, despite the rain. We thank the McCourt Foundation, who organizes this event, for their welcome of partner organizations like MassME. Our team raised almost $14,000 for our programs and events that support people living with ME/CFS, FM, and Long COVID.

Thanks to all the participants, those who came to cheer us on, and those who generously donated. See you all next year!​
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Video of Patricia Fennell, MSW (Massachusetts ME/CFS &FM Association presentation)

"A Powerful Paradigm for Living with Chronic Illness" originally from October 26. 2024

Patricia Fennell's introduction and presentation begins at 15:28. (I found it helpful.)

 
Recording of "A Powerful Paradigm for Living with Chronic Illness, with guest speaker Patricia Fennell"

"MassME 2024 Annual Meeting: A Powerful Paradigm for Living with Chronic Illness, with guest speaker Patricia Fennell, MSW, LCSW-R,
clinician, researcher, educator, and author

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."

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

Mass MECFS & FM Association
2.17K subscribers

229 views 7 Nov 2024
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

https://twitter.com/user/status/1857918374002430032
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Next up in the Sunday Conversations series:

“Going into the new year, what are your hopes and dreams?”

Sunday, January 19
4 p.m. Eastern Time

https://www.massmecfs.org/news-events/66-sunday-conversations/913-sunday-conversations-jan2025
Massachusetts ME/CFS and FM Association said:
A community conversation focusing on positive visions for the coming year.

Join with others to generate a positive outlook for the future. Hopes are always with us; dreams can be for things big or small. Hopes and dreams can bring us joy. Let’s imagine together and be inspired!

We will meet on Zoom but most of the hour will be talking with others in a small group (Zoom break-out room). The most intriguing ideas can be reported to the entire group at the conclusion.
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Find the time in your time zone here:

https://www.timeanddate.com/worldcl...s+for+the+New+Year&iso=20250119T16&p1=43&ah=1

Registration link:

https://www.massmecfs.org/component/civicrm/?task=civicrm/event/register&reset=1&id=200
 
Two new online groups, targeted at specific age groups, hosted by the Massachusetts ME/CFS and FM Association:

NEW! Gen Z & Millennial Groups Feb/Mar/Apr 2025
Hey Gen Z and Millennials, we got you!

Register for one or both, the only restriction is where you live.

You must live in MA (Massachusetts) to attend the Wellness Workshop and New England for the meetup.
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Wellness Workshops will be held on Wednesdays (Feb 12, March 5, April 9) from 5:00 - 7:30 PM Eastern Time. More details here:

https://www.massmecfs.org/news-events/915-wellness-workshop-for-millennials-gen-z-feb-mar-apr-2025


New England Meetups will be held on Wednesdays (February 26, March 19, April 30) from 2:00 - 3:30 PM Eastern Time. More details here:

https://www.massmecfs.org/news-events/916-new-england-meetup-for-millennials-gen-z-feb-mar-apr-2025
 
Massachusetts ME/CFS and FM Association announced their new website design on Bluesky today.

Here's the text from their post:
We are excited to launch our new website today, marking International ME Awareness Day. You will find us in the same place — massmecfs.org — with a fresh new look and easier navigation to the information, resources, events, and services you need. Let us know what you think!

(Please note that we have moved content around as part of the site redesign, and existing bookmarks you may have had may be broken. We apologize for any inconvenience.)
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website = https://massmecfs.org/

Bluesky post = https://bsky.app/profile/massmecfs.bsky.social/post/3loytzmx32k2g
 
Mass ME/CFS
Sunday, May 18, 2025, 4:00-5:00 p.m. ET Presented by the Massachusetts ME/CFS & FM Association
All are welcome! Register at www.massmecfs.org

Sunday Conversations
Community Conversations
"Shared Paths: Connecting Through Similar Stages of Your Chronic Condition"
Sunday, May 18, 2025, 4 p.m. Eastern Time

This edition of Sunday Conversations will be a discussion with small groups. Participants will be grouped based on how long they have been living with their condition or the stage they are currently experiencing.

We invite you to share common themes such as: How are you coping right now? What strategies or supports have helped you at this stage? And how does this stage compare to other times in your illness journey?

The discussions will not be recorded.

Register for Sunday Conversations
https://form.jotform.com/243518011897157

9 PM in Great Britain & Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...Chronic+Condition"&iso=20250518T16&p1=43&ah=1

https://twitter.com/user/status/1922428471810064653
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