USA: Massachusetts ME/CFS & FM Association news

Yeah, it didn't look that great to me, either. I didn't include this item in our weekly news brief.

 

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

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

 

The slides and a recording are now available:
https://www.massmecfs.org/news-events/66-sunday-conversations/881-sunday-conversations-mar2024

 

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

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

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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.)

https://www.youtube.com/watch?v=Oh2XvxHwrxM

 

Thanks. A very interesting and level-headed talk indeed.

 

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."

https://www.youtube.com/watch?v=Oh2XvxHwrxM

 

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