USA: Massachusetts ME/CFS & FM Association news

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.

 

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.

 

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.

 

Did anyone watch this?

 

Cort Johnson write-up

https://twitter.com/user/status/1588523710793003008


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

 

“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.

 

"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.

 

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

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

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

 

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.

 

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

Register here:

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

 

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."

 

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!"

https://www.youtube.com/watch?v=vyjBFD6AseQ

One hour long. I have not watched it.

 

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!

 

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

 

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/