Okay, that's all for today! If you made it all the way here, thanks so for reading! ❤️

Please share this information with others! Boost this thread, share links with friends & family, etc.

I'll end with a quote from Naomi Whittingham:

"No matter how isolated you might be, you are inextricably connected to the rest of humanity in ways you can’t fully imagine."

Source = https://alifehidden.com/2026/05/10/not-forgotten/

23/23

@mecfs @longcovid

#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay

I'm taking another break while I gather up and organize the final section of this thread, actions you can take to help folks with ME/CFS & Long Covid.

Stay tuned - I will be back a bit later to finish the thread!

16/n

@mecfs @longcovid

#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay

Want to discuss the science of ME/CFS & Long Covid with patients, doctors, researchers, other interested folks?

There's a moderated forum called Science for ME:

https://www.s4me.info/whats-new/

Full disclosure, I'm a forum member and one of the volunteers who do the "News in Brief" summary. It's posted weekly on Mastodon and Bluesky.

The forum also has subforums where patients can chat or share funny/silly stuff. Come join us! 😁

15/n

@mecfs @longcovid

#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay

Another ME/CFS research & advocacy group is Solve M.E.

https://solvecfs.org/

They hold Advocacy Week every year, meeting with government representatives to lobby for legislation that will help ME/CFS and Long Covid (research funding and other asks).

They also run the Ramsay Research Grant Program - since 2016, 37 studies have been supported by Ramsay Grants.

https://solvecfs.org/research/ramsay-research-grants/

14/n

@mecfs @longcovid

#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay #MedMastodon #SolveME

Another ME/CFS group is #MEAction. They've done great advocacy work over the years, including this protest in 2023. They put 300 cots on the lawn at the Washington Monument.

People with ME/CFS or Long Covid sent in pillowcases with personalized messages - you can see some of the pillows in this video.

Video from the event:

https://www.youtube.com/watch?v=FULqhB--k7k

Website:

https://storyofmillionsmissing.org/dc-protest/

This event got good press coverage.

13/n

@mecfs @longcovid

#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay

Next I'll list some of the ME/CFS groups which have resources for patients and clinicians.

I'll start with the Bateman Horne Center since I just mentioned them. They have online support group meetings twice a month.

They also have regular "Coffee" with a Clinician sessions where they talk about different ME/CFS issues.

Event calendar:

https://batemanhornecenter.org/events/

Home page:

https://batemanhornecenter.org/

12/n

@mecfs @longcovid

#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay

OK, I'm gonna take a rest break!

I'm trying to avoid PEM (post-exertional malaise), aka PESE (post-exertional symptom exacerbation)

Pacing is hard! It often fails due to some unplanned exertion which can't be avoided. And sometimes adrenaline takes over when I should be resting.

In short, it's easy to do too much and crash. Fact sheet about PEM:

https://www.s4me.info/threads/science-for-me-fact-sheets.43310/#post-606969

I'll be back later today! 😁

9/n

@mecfs @longcovid

#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay

What does #MillionsMissing mean?

Even mild cases of ME/CFS cause significant loss. So people with ME/CFS are "missing" from work, socializing, exercise, etc.

Moderate cases cause more loss so that people can rarely leave the house.

People with severe cases are in bed, rarely able to intereact with anyone.

As ME/CFS gets worse a person's life shrinks more and more.

The attached comic is by Kornelia Paulsen.

8/n

@mecfs @longcovid

#MEcfs #LongCovid #SevereME #MEAwarenessDay #WorldMEDay