USA: News from #MEAction

ME Action put out this newsletter yesterday:

https://mailchi.mp/meaction/why-the-press-wants-to-talk-with-meaction

Needless to say this is gibberish. Most forms of EDS are Mendelian. And regardless of whether you think that polygenic hypermobility should be classified as EDS III or not there is also no evidence of viruses causing or worsening EDS in this way. And, finally, it is simply wrong: viruses can't make collagenases.

(Yes, some viruses like HIV can alter host expression of various different matrix metalloproteinases, and cytokine release can also result in the upregulation of various MMPs. Some bacteria can make collagenases, although viruses can't. But all of that is a long way from "trigger EDS".)

Getting nonsense into National Geographic is not something to be proud of. Is there an advocacy organisation or charity that does have sensible views these days?

 

The evidence isn't particularly high-quality...

 

There is no research worthy of that name. They are citing Seltzer along with the hypermobility crowd like Jessica Eccles, Linda Bluestein, and some hunky physios. It is just the same old song.

It has infected the highest ivory towers of Mayo, Harvard, Sheffield, Brighton, Wimple Street...

 

It's a mess, isn't it. Specially as the medical professionals charities call on to talk to the media also have a tendency to make it up as they go along. They seem to think they have to talk up their 'expertise' in ME/CFS in order to justify holding the mic.

It's really frustrating when there are plenty of stories and angles that are compelling enough on their own.

 

From #MEAction:
A Very Modified Movement Class on 11/15

https://www.meaction.net/2024/11/01/a-very-modified-movement-class-on-11-15/

Find the time in your time zone here:

https://www.timeanddate.com/worldcl...d+Movement+Class&iso=20241115T14&p1=263&am=30

 

From #MEAction:
You’re Invited: The Beth Mazur Innovation Prize Fundraiser

https://www.meaction.net/2024/11/01/youre-invited-the-beth-mazur-innovation-prize-fundraiser/

 

This news item was posted on Oct. 10th but while I saw some mention of this on other threads I don't think it ever got posted on this thread (my searches here didn't find anything).

From #MEAction:

Urgent Action Needed: Demand NIH Fund the ME/CFS Research Roadmap!

https://www.meaction.net/2024/10/10...-demand-nih-fund-the-me-cfs-research-roadmap/

I know they are still looking for signatures because there have been posts on social media over the last couple of days.

Note: The link above is for US signees. There's a separate petition link for international signees.


EDIT: This link for US signees might be a better one for sharing on social media (different format)

https://win.newmode.net/fundmeroadmap

 

Saturday, November 16 CAREGIVER SUPPORT CALL ( for caregivers of people with ME (#myalgicencephalomyelitis), #LongCOVID and associated conditions)
https://www.meaction.net/event/me-caregiver-support-call-2024-11-16/

3:30 PM ET/8:30 PM in Great Britain & Ireland

Find the time in your time zone here
https://www.timeanddate.com/worldcl...AREGIVER+SUPPORT+CALL+&iso=20241116T1530&ah=1

 

I have not watched this video yet, just happened to see it listed on the #MEAction YouTube channel:

The Voice of the Patient Panel - #MEAction Georgia

https://www.youtube.com/watch?v=1oWNxE3DEQw

There is a transcript but I believe it was automatically generated, no human editing or proofreading, so probably full of errors.

 

#MEAction & Mayo Clinic Projects Continue – New Grant Awarded

https://www.meaction.net/2024/11/18/meaction-mayo-clinic-projects-continue-new-grant-awarded/
(line breaks added in quote below)

 

New episode for Chronically Complex podcast, Episode 9: The Pillow Writers:

https://www.meaction.net/chronically-complex-meaction-podcast/

Bluesky thread has more details = https://bsky.app/profile/meactnet.bsky.social/post/3lbkjf5gqec2t

 

Saturday, December 21

Caregiver Support Call ( for caregivers of people with ME (#myalgicencephalomyelitis), #LongCOVID and similar)

https://www.meaction.net/event/me-caregiver-support-call-2024-12-21/

3:30 PM ET/8:30 PM in Great Britain & Ireland

Find the time in your time zone:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=Saturday,+December+21+Caregiver+support+group&iso=20241221T1530&p1=179&ah=1