USA: Massachusetts ME/CFS & FM Association news

[Trish]

MECFS is diagnosed based on symptoms. If you meet the symptoms criteria (for 6 months), then you have disease. MECFS is agnostic as to the trigger.

I understand and agree with that, but I think there are still questions over whether LC may turn out to be biologically a distinct enough subgroup of people who fit ME criteria to end up with different diagnostic tests and treatments. For example the spike protein may be affecting organs like the lungs and brain in ways that ME triggered by other viruses don't have.

 

[RedFox]

It's not at all wrong for Dr. Komaroff to refer to the connections between ME and LC as "emerging." It's a condition that's less than three years old. That's an eternity for people who are suffering, but not long for science. LC is far newer than most other diseases, which are probably as old as time. There are still only a few studies showing a significant proportion of people with long Covid have ME.

 

[bobbler]

I understand and agree with that, but I think there are still questions over whether LC may turn out to be biologically a distinct enough subgroup of people who fit ME criteria to end up with different diagnostic tests and treatments. For example the spike protein may be affecting organs like the lungs and brain in ways that ME triggered by other viruses don't have.

and of course that rarely have those with ME been studied before they had it for a number of years in the way LC people have because they are a group who all have a designated point of getting ill, and it is relatively similar [timing] for them all. It might be a case of 'mapping back' some of the ME stuff where our 'early days' stuff is missing once there is a point where the two look approx the same rather than taking someone who had ME for 20yrs and comparing them to someone with LC for 1yr.

 

[bobbler]

I just found this, about post-polio syndrome which I didn't know existed (was thinking about the aftermath of polio epidemics when I searched): https://www.christopherreeve.org/li...f-paralysis/post-polio-syndrome-poliomyelitis

It's interesting to think that there are indeed already situations where there are some who have 'stages' of recurrence or things wearing out etc.

I wonder whether this PEM mapping is really key, along with much better symptom histories from patient's mouth instead of 'interpreted' where the detail is lost. We don't know for ME when people get more severe whether it is just virus, bad luck, or ongoign over-exertion for a long time. That's terrible really - because patient's know and can say, they've just had their voice removed from them/aren't believed by most when they make this assessment.

These could help point towards what is going on with a few clues that might be lightbulb, but also make mapping more possible to other conditions, different progression pathways etc.

 

[Jaybee00]

Did anyone watch this?

 

[Jaybee00]

Cort Johnson write-up



https://www.healthrising.org/blog/2022/11/03/komaroff-chronic-fatigue-syndrome-long-covid/

 

[Jaybee00]

“Komaroff hoped that Abilify’s manufacturer would pick up the tabs for a large Abilify ME/CFS trial.”

Nope. Abilify is no longer under patent. However, possible, for Rexulti and Vraylar.

 

[Mij]

"Komaroff listed only 3 things found in ME/CFS (ion channelopathy, exhausted NK/T-cells, craniocervical instability) that have not been found yet in long COVID – perhaps for lack of looking".

Does anyone have a figure on how many people diagnosed with ME had craniocervical instability? n=3 was my last count.

 

[ahimsa]

Selected readings from The Long Haul, with Ryan Prior and Cynthia Adinig

Sunday, January 22, 2023, 4 p.m. EST

Please join us as journalist and ME patient Ryan Prior reads excerpts from his new book, The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever, released November 2022 by Post Hill Press. He will be joined by marketing specialist and Long COVID advocate Cynthia Adinig, whose experiences obtaining treatment are discussed in the book. Rivka Solomon, long-time ME/LC advocate and MassME member, will host the meeting.

Following the readings, Ryan and Cynthia will respond to questions and comments from the audience. The entire program is expected to last about 75 minutes. A recording of the presentation will be available after the event.

Event is free and will be recorded for later viewing. Register here:

https://www.massmecfs.org/news-events/66-sunday-conversations/832-sunday-conversations-jan2023

 

[ahimsa]

Note: Due to professional licensing issues, you must be a Massachusetts resident to attend this group.

Announcement from The Massachusetts ME/CFS and FM Association:

Young Adult Support Group for those with ME CFS, FM, Lyme, Long Covid, and Chronic Illness - Feb. 18, 2023

https://www.massmecfs.org/component/civicrm/?task=civicrm/event/register&reset=1&id=134&cid=

Saturday, February 18th at 10:30 A.M. ET on Zoom

This drop-in Virtual Support Group is interactive and provides a safe space for patients to share stories and experiences, ask questions, and offer one another support.

This class is free for members. There is a $10 suggested donation for those that can afford to contribute. A contribution of $25 or more will include membership for the year.

 

[ahimsa]

Here's the next event in the "Sunday Conversations" series:

"The Broken Mishkan: Performance and Community Conversation with Sara Nesson"

Sunday, March 19
4 pm Eastern Time / 1 pm Pacific Time

Find the time in your timezone here:
https://www.timeanddate.com/worldcl...n+with+Sara+Nesson&iso=20230319T16&p1=43&ah=1

Mishkan is Hebrew for “sacred space.” The Broken Mishkan is a 23-minute theatrical work that follows author Sara Nesson’s compelling journey toward wholeness after being diagnosed with ME/CFS. From swimming New Hampshire lakes to chanting psalms with nuns in a California forest, in a story spiced with humor and Jewish mysticism, Sara celebrates the poignant connections between art, healing, wilderness, and blessing.

The 23-minute presentation will be followed by a period of conversation, with the entire program expected to last less than an hour. A recording of the presentation will be available briefly after the event, but only for those who registered for the event, and will not be posted to the MassME website.

Sara Nesson (http://saranesson.com/) is an artist, writer, and performer who learned to draw after losing her good health. A lifelong creative, she has led candlelight services in churches, performed with A Traveling Jewish Theatre, mentored Jewish teenagers, and traversed the United States as a travel writer. She is currently at work leading an initiative to build visibility and equity for artists living with chronic illness or disability in Marin County, California.

Register here:

https://www.massmecfs.org/component/civicrm/?task=civicrm/event/register&reset=1&id=142

 

[ahimsa]

March Newsletter from the Massachusetts ME/CFS and FM Association:

https://www.massmecfs.org/component/civicrm/?task=civicrm/mailing/view&id=1237&reset=1

Includes information on their "Sunday Conversations" series (see previous post) and a series of Young Adult Support Group meetings

Important note about support group meetings: "Due to professional licensing requirements, we are only able to offer this program to Massachusetts residents."

 

[ahimsa]

Massachusetts ME/CFS and FM Association has posted a recording of the June 18 session of their "Sunday Conversations" series on their YouTube channel.

"ZOOM through 40 years of ME/CFS with MassME!"

Join us to see how MassME has stayed alive and relevant for 40 years. We’ll fly through four decades of change around this misunderstood and stigmatized disease. Learn about our unique patient-led organization that has influenced progress and now helps patients more than ever.

This lively program will combine important history and good-to-know facts with a bit of fun and an interview with one of MassME’s treasures.

One hour long. I have not watched it.

 

[Dolphin]

https://www.massmecfs.org/news-events/66-sunday-conversations/857-sunday-conversations-aug2023

Join MassME for an August Sunday Conversation! We are looking forward to meeting you on Zoom. Summer is a time for informal gatherings and socializing. Let's get to know one another, and have a chance to ask questions and share experiences!

After a brief welcome and introduction, we will gather together in small groups for moderated conversations about two topics of interest to our community.

“Living with chronic illness: How to you find meaning in your life?”
“Pacing: Personal approaches and what works for you?”

When you register, you can select which topic that you would like to explore with others. All are welcome - come to learn, share or just listen.

Based on your previous feedback, we will allow 40-45 minutes for a group discussion on your chosen topic. We'll return to the full group for a brief "de-brief" before signing off.

This is a live event via Zoom. It will not be recorded.

Living with Chronic Illness
Sunday, August 20, 2023
4 - 5 p.m. Eastern Time

Register now!

 

[Hutan]

Latest MassME newsletter is out

17 September - webinar by a Long covid clinician

We will discuss what is known to date about the biology of Long COVID, the approaches taken in caring for Long COVID care in existing clinics, and what is known about the overlap between ME/CFS and Long COVID.

Jason Maley is an Assistant Professor of Medicine at Harvard Medical School and Lecturer at the Massachusetts Institute of Technology. He works as a pulmonary and critical care physician and is Director of the Long COVID clinic at Beth Israel Deaconess Medical Center in Boston.

This Zoom event will be recorded.

28 October - webinar by Ed Yong

Ed Yong is a celebrated science journalist who cares deeply about accurate, nuanced, and empathetic reporting; clear and vivid storytelling; and social equality. His coverage of ME/CFS and Long COVID for The Atlantic has been groundbreaking. Yong’s work has contributed to a changing public perception of these illnesses, moving us toward a public health agenda that recognizes the serious nature and commonalities of infection-associated chronic conditions, and supports advances in research and clinical care.

Mr. Yong will share how he came to the subject of ME/CFS and Long COVID and what has motivated him to dig so deeply and tenaciously into them. He will share his thoughts on what is yet to be explored about ME/CFS from a journalistic perspective, and how science journalism contributes to changing perceptions.

Registration information to follow.
This event will be virtual, and attendance will be free for MassME members.

There are dates for their Young Adult Support Group - Massachusetts residents only

News of a new medical education course

A new Long COVID and Post-Viral Syndromes medical education course (ECHO) will start on October 5, 2023. These live sessions are for healthcare providers to learn more about assessment and management of cases involving Long COVID, ME/CFS and related comorbidities.

Attendees can earn CME credits. Learn more here.

Also promotion of a fibromyalgia study that looks possibly problematic. Thread here: USA Massachusetts:Spaulding Fibromyalgia study

 

[Amw66]

 

[ahimsa]

Next up in the Sunday Conversations series:

"What Sociology and the Illness Narratives Can Teach Us About Living with Chronic Illness"

November 19, 2023
4:00 pm Eastern Time

https://www.massmecfs.org/news-events/66-sunday-conversations/868-sunday-conversations-nov2023

Helen McGunnigle is a graduate of Hampshire College where she studied pre-medical sciences and conducted an ethnographic study of college students living with contested chronic illness (including chronic or post-treatment Lyme disease syndrome, ME/CFS, and fibromyalgia) for her senior thesis.

In this Sunday Conversation, Helen will highlight the findings from this research project, exploring the early histories of these illnesses and what exactly makes them so contested.

Following this discussion, she will lead a conversation on the impacts of living with chronic illness. A recording will be available after the event.

Helen McGunnigle is a current volunteer of Mass ME/CFS who helps run and develop the Sunday Conversations programming. She received her bachelor’s degree from Hampshire College and currently lives in Pennsylvania working as a clinical research coordinator.

Register here:

https://www.massmecfs.org/component/civicrm/?task=civicrm/event/register&reset=1&id=167

 

[Dolphin]

Next up in the Sunday Conversations series:

"What Sociology and the Illness Narratives Can Teach Us About Living with Chronic Illness"

November 19, 2023
4:00 pm Eastern Time

https://www.massmecfs.org/news-events/66-sunday-conversations/868-sunday-conversations-nov2023

Register here:

https://www.massmecfs.org/component/civicrm/?task=civicrm/event/register&reset=1&id=167

Recording now available:
https://www.massmecfs.org/news-events/66-sunday-conversations/868-sunday-conversations-nov2023

 

[ahimsa]

Next up in the Sunday Conversations series:

"It's Not 'All In Your Head' "
Multi-Modal Healing with Judy Tsafrir

Sunday, January 21
4 PM Eastern Time

https://www.massmecfs.org/news-events/66-sunday-conversations/874-sunday-conversations-jan2024

When a patient consults a physician and reports symptoms that refer to multiple unrelated organ systems which do not fit with known patterns or conditions, and when the laboratory tests that are conventionally run do not reveal any abnormalities, the conclusion is reached that they should see a psychiatrist.

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.

These patients are in fact often quite depressed and anxious because the inflammation that is affecting their entire body is also affecting their brain, and importantly, because living with disabling symptoms for which they cannot get any help creates feelings of desperation.

In my clinical practice, patients with this presentation are frequently suffering from Mast Cell Activation Syndrome (MCAS), the most common cause of which is environmental from mold toxins. Many of these patients also suffer from the connective tissue disorder, Ehlers Danlos Syndrome (EDS).

This talk will be a discussion of the multi-modal holistic approach that I take in my practice to the treatment of these three conditions (MCAS, Mold Toxicity, EDS) which so often manifest with depression, anxiety, insomnia, inattention, and brain fog and thus commonly result in referral to a psychiatrist.

 

[Laurie P]

Next up in the Sunday Conversations series:

"It's Not 'All In Your Head' "
Multi-Modal Healing with Judy Tsafrir

Sunday, January 21
4 PM Eastern Time

https://www.massmecfs.org/news-events/66-sunday-conversations/874-sunday-conversations-jan2024

I'm extremely disappointed to see the Massachusetts ME/CFS & FM Association giving this person a platform.

Judy Tsafrir, M.D.
Holistic Adult and Child Psychiatry in Newton, MA
https://www.judytsafrirmd.com/

My practice is dedicated to healing through integration of heart, mind, body, soul and the biosphere and Cosmos.

Holistic Psychiatric Services

• Holistic Psychiatric Evaluation/Healing
• Psychoanalysis and Psychotherapy
• Tapering from Psychiatric Pharmaceuticals
• Treatment of Environmentally Acquired Illness
• Treatment of Ehlers Danlos Syndrome
• Ketamine Assisted Psychotherapy
• Accelerated Resolution Therapy (ART)
• Astrology Consultations
• Tarot Consultations
• Body Intuitive Energy Healing Sessions