#MEAction

#MEAction is asking folks who have ME / Long Covid to take action to spread the word:

- If you sent a pillowcase for the Millions Missing demonstration re-share it on social media and say why you wanted to tell your story.

- Share the #MEAction site on your social media, say what Millions Missing has meant to you.

- If you see a Millions Missing photo with a news story add a comment to explain more about the photo.

#MEcfs #LongCovid
#PwME #PwLC #MyalgicEncephalomyelitis
#MillionsMissing

Email from #MEAction

"Exciting news!! We have created a Home of the Millions Missing where we showcase our historical movement for ME.

We continue to see photos of our Millions Missing demonstrations on the National Mall and in front of the White House circulate throughout the media, and we want to make sure the world knows the full story of ME behind those protests!"

Full email here:

https://mailchi.mp/meaction/nih-comes-up-short-once-again-2271014

#MEcfs #LongCovid
#PwME #PwLC #MyalgicEncephalomyelitis
#MillionsMissing

Reminder that #MEAction hosts a weekly online writer's group, on Thursdays at 11 am Pacific Time, called "Writing for Our ME Lives" for people with ME.

The next one is Thursday, September 28.

Full details here:

https://www.meaction.net/event/writing-from-our-me-lives/2023-09-28/

#MEcfs #PwME #Writers #Writing

Reminder from MEAction:

Story of the Millions Missing
Preview Party
Sunday, Sept. 24
12 pm (noon) PT / 3 pm ET / 8 pm BST

Article with more about this event:

https://www.meaction.net/2023/09/20/previewparty924/

RSVP here:

https://www.meaction.net/event/join-us-for-a-preview-party/?mc_cid=ba424561f0

#MEcfs #PwME #MyalgicEncephalomyelitis #MillionsMissing #MEAction

"If you created a pillowcase, we’d love for you to send in a caption to add to it.

Email us a caption and image of your pillowcase (or description) to info@meaction.net.

Please limit the caption to 40 - 75 words (max 400 characters)."

Here's a link to an email from #MEAction with full details:

https://mailchi.mp/meaction/nih-comes-up-short-once-again-2270938

#MEcfs #LongCovid #MillionsMissing #PwME

3/3

Thread from #MEAction:

"Join us next Sunday, September 24th at 12 pm PT/ 3 pm ET/ 8 pm BST for a Virtual Preview Party for our new website featuring the Story of the Millions Missing.

The new site will go live on Sept. 25th.

We hope you will help us by sharing far and wide!"

https://www.meaction.net/event/join-us-for-a-preview-party/

1/3

#MEcfs #LongCovid #MillionsMissing #PwME

Time: Why You Should Rest - a Lot - If You Have #COVID19 (September 2022)

Informative article on PEM and pacing with among others Jamie Seltzer from #MEAction.

https://time.com/6215346/covid-19-rest-helps/

“I had no idea that I should try to rest as hard as I needed to rest,” she says.

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid @covid @covid19
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver

1/

A thread from #MEAction 🧵

"Since the beginning of #MillionsMissing, we have emphasized that your story matters. A story can change the world. An image can speak to our souls. Our collective action can effect change. #MillionsMissing is our drumbeat for telling those stories"

1/n

#MECFS #pwME #LongCovid #PwLC

#MEACTION GEORGIA SUPPORT CALL

https://www.meaction.net/event/meaction-georgia/2023-09-21/
People anywhere in the world are welcome.

1:00 PM EDT/6 PM in Great Britain & Ireland

Find the time in your time zone here
https://www.timeanddate.com/worldclock/fixedtime.html?msg=%23MEACTION+GEORGIA+SUPPORT+CALL&iso=20230921T13&p1=25&ah=1

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

@hosford42

This Pacing and Management Guide for ME/CFS (it also applies to many folks with Long Covid) might help. It has more info about PEM:

https://www.meaction.net/wp-content/uploads/2021/02/Pacing-and-Management-Guide-for-ME_CFS-9.pdf

I'm not always very articulate when trying to describe symptoms!

#MEcfs #LongCovid #PEM #MEAction

The monthly #MEAction support group for partner caregivers is tomorrow

Sunday, September 3rd
12 pm PT / 3 pm ET / 8 pm BST

Caregivers who are spouses, partners, or significant others of people with ME/CFS, Long Covid, and associated conditions are invited to join.

https://www.meaction.net/event/me-partner-caregivers-support-group/2023-09-03/

#MEcfs #PwME #LongCovid #PwLC #Support #Caregivers

@LLS

I don't think it's possible to completely avoid PEM with pacing (too many variables). And your list of activities looks pretty intense for someone who has ME! (I can't climb stairs without getting PEM)

However, there are various methods that folks with ME have tried that may help (heart rate monitoring and others).

There is a Pacing and Management Guide on this #MEAction web page:

https://www.meaction.net/stoprestpace/

I hope it is helpful!

@mecfs

#MEcfs #PwME #StopRestPace #Pacing

"#MEAction and Long COVID Justice Issue Press Statement about NIH Failure of Long COVID"

Talks about issues with planned NIH RECOVER clinical trials.

Article:

https://www.meaction.net/2023/08/23/meaction-issues-press-statement-about-nih-failure-of-long-covid/

Press release:

https://www.meaction.net/wp-content/uploads/2023/08/RECOVER-clinical-trials-press-release-.pdf

@mecfs @longcovid

#MEcfs #LongCovid #Research #Advocacy #NIH

“#MEAction’s Summer Work Heats Up”

https://www.meaction.net/2023/08/16/meactions-summer-work-heats-up/

#MEAction posted an update about their work, including working with Mayo Clinic on medical education, urging the US Congress to establish a COVID-19 Task Force, working with media outlets to improve coverage of ME/CFS and Long Covid, and many more projects.

#CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #mecfs @mecfs

From #MEAction -

"DHSC interim delivery plan on ME/CFS"

Information about the survey and other FAQs.

Please direct any questions to MEAction. If you scroll to the bottom of the page you can post comments on the meaction.net website.

https://www.meaction.net/2023/08/10/dhsc-consultation-faq/

#MEcfs #PwME #NHS #UK

#MEAction Network

#MEAction had the pleasure of partnering with Shannon Williams-Bramburger of Nourish Therapeutic Yoga to provide a 30 minute, virtual yoga class this summer that was crafted specifically for people with ME.

Still approach cautiously & #StopRestPace.

https://youtu.be/gKbEnTHD3mc

#pwME #MECFS #MyalgicEncephalomyelitis #LongCovid #yoga #spoonie @mecfs @longcovid @yoga @spoonies

"#MEAction’s Summer Work Heats Up"

A report on many ongoing projects - here's just a sample:

- transforming medical education at Mayo Clinic
- serving as a panelist for Project ECHO
- advocating for Congress to establish a COVID-19 Task Force

https://www.meaction.net/2023/08/16/meactions-summer-work-heats-up/

#MEcfs #LongCovid #ChronicIllness #NEISvoid #Advocacy

can't help but laugh in a grunp way every time #MEcfs things immediately switch to talking about long covid, combined with things saying "zomg its so weird how similar long covid is to ME" because its not like post viral illness with PEM (and everything else) could be the same fucking thing.

still grunpy about world ME day where #MEaction ONLY had speakers talking about long covid.

y'all dun wanna be us but you are us. welcome to unlife and poverty ✌🏽

From #MEAction for Severe ME Day:

"Severe ME Artist Project 2023 — Gallery"

"The Severe ME Artist Project 2023 features work from those within the severe ME community and is in recognition of Severe ME Day on August 8th.

We had over 150 submissions, and we are blown away by this response – thank you!"

https://www.meaction.net/2023/07/31/severe-me-artist-project-2023-gallery/

#MEcfs #PwME #SevereME #SevereMEday #Art #Video #Writing

@mecfs

#MEAction Network

We are honored to share the Severe ME Artist Project 2023 in honor of #SevereMEDay. Thank you to all who submitted their work for this project and holding space for all who could not participate.

Gallery & Video: https://meaction.net/2023/07/31/severe-me-artist-project-2023-gallery/

#SevereME @severeme #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @mecfs

Thursday, August 17 #MEACTION GEORGIA SUPPORT CALL
https://www.meaction.net/event/meaction-georgia/2023-08-17/

Open to people around the world.

1pm EDT/6 PM Great Britain & Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=August+17+%23MEACTION+GEORGIA+SUPPORT+CALL+&iso=20230817T13&p1=25&ah=1

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME
@mecfs

"#MEAction Calls for ME & Long COVID to be Part of COVID-19 Task Force"

News item:

https://www.meaction.net/2023/07/25/meaction-calls-for-me-long-covid-to-be-part-of-covid-19-task-force-act/

MEAction is asking folks to write a letter urging Congress to establish a national task force to investigate the COVID-19 outbreak. They have signed on to Marked By Covid’s open letter to Congress calling for the bill’s passage.

@longcovid
@mecfs

#COVID19 #MEcfs #LongCovid #USA #USPol

For some helpful Long Covid information, and resources on pacing and management, see this #MEAction web page:

"Stop. Rest. Pace"

https://www.meaction.net/stoprestpace/

#COVID #LongCovid #StopRestPace #MEAction

#MEAction will now host Body Politic’s advocacy work as a project. "As more people with Long COVID begin to be diagnosed with ME, and as Long COVID research opportunities still continue to thrive, this joining of forces is an opportunity that we believe will be very beneficial to us all."

https://t.ly/l5rC2

@mecfs @longcovid #longcovid #mecfs #MyalgicEncephalomyelitis #pwme #pwlc #PostCovid #PostCovid19 #cfs #cfsme #PwMEs

Très bonne nouvelle dans le militantisme des maladies chroniques, la fusion de deux collectifs puissamment subtils, politisés avec une finesse contemporaine : "#MEAction & @itsbodypolitic : We Are Stronger Together" https://mailchi.mp/meaction/nih-comes-up-short-once-again-2270677

From the #MEAction group:

"You have 4 more days to submit your work to be included in the Severe ME Artists Project!

We are asking that all work be submitted by the end of the day on Tuesday, July 25th!

If you need help, please message us or email info@meaction.net. "

https://www.meaction.net/2023/06/30/severe-me-artists-project-2023/

#SevereME #MEcfs #MyalgicEncephalomyelitis #Art

#MEaction has pissed me off and now I am even more exhausted.

read a rando comment sayin "ppl with #MEcfs are so much more than ill"

maybe you are but i'm not. i'm sick all the time. it is all of me. it strangles me. i hate it. i am only a sick person. i live an unlife. i'm lucky that i can still think, be on a computer, can watch movies, etc. I can and probably will get worse.

meh.

#MEcfs

#MEaction has a fucking insultingly short deadline art thing for folks with Severe ME https://www.meaction.net/2023/06/30/severe-me-artists-project-2023/

not sure they know anything about copyright either.

I'm not fuckin doing it. fucking like a 2 week deadline? what the fuck were they thinking.

#MEcfs #DisabilityLifestyle is sometimes being kept out of participating in your own group due to the disability they claim to support.

From #MEAction:

"Attention people with Severe ME: the deadline to submit your art is July 25th.

#MEAction's Severe ME Artists Project 2023 will feature work from those within the severe ME community and will be in recognition of Severe ME Day on August 8th."

Details here:
https://www.meaction.net/2023/06/30/severe-me-artists-project-2023/

#MEcfs #SevereME #MyalgicEncephalomyelitis #Art #Artists

"#MEAction UK submits a rapid response to the JNNP in support of NICE."

"In the article ‘Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis’ published in the Journal of Neurology, Neurosurgery & Psychiatry on 10th July 2023, the authors claim NICE invented a new definition of ME. These claims are unfounded as NICE used the Institute of Medicine (IOM) criteria which is now 8 years old …"

#MEcfs

From #MEAction

"REMINDER! We plan to create something with the pillowcases sent in for #MillionsMissing. We are still working out the details.

If you couldn't send in a pillowcase before but would like your pillowcase to be included in our upcoming project, mail one by August 1st."

EDIT: Deleted a broken link. See photos from May 12 event for ideas - https://meaction.smugmug.com/MillionsMissing-2023/

Remember to send pillowcase to new address! (see attached image)

#MEcfs #PwME #LongCovid #PwLC #MillionsMissing #Art

@LauraJMG @lesliewhat

Not sure if you are interested but #MEAction is going to do a project with the Millions Missing pillowcases. Anyone who could not make one in time for the May event can send one now. Deadline August 1st.

See https://disabled.social/@ahimsa_pdx/110522291436705368

(which reminds me, I should do another reminder)

From #MEAction UK:

"Response to the Guardian article 11 July 2023"

"MEAction UK was shocked to read the article ‘ME/CFS guidance that discourages exercise is flawed, say researchers’ published on 11th July 2023. The article covers an attack on the 2021 NICE guideline for ME/CFS by a group of researchers who have focused on treating ME with their pet therapies."

Read more here: https://www.meaction.net/2023/07/11/meaction-uks-response-to-the-guardian-article-11-july-2023/

#MEcfs #PwME #MyalgicEncephalomyelitis

#MEACTION GEORGIA SUPPORT CALL July 20

https://www.meaction.net/event/meaction-georgia/2023-07-20/

People from around the world are welcome
1:00 pm - 2:00 pm EDT/6 PM in Great Britain & Ireland

Find the time in your time zone here
https://www.timeanddate.com/worldclock/fixedtime.html?msg=%23MEACTION+GEORGIA+SUPPORT+CALL+July+20&iso=20230720T13&p1=25&ah=1

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME
@mecfs

@lesliewhat

Right?? I really wanted to do pillowcases for Carita and me, but couldn’t muster the cognitive or physical energy in time for it. Next year perhaps.

The #MEAction folks are amazingly creative. I don’t know how they do it, honestly—but I’m so thankful for their efforts.

From #MEAction:

"Severe ME Artists Project 2023"

This project will showcase artwork from those in the severe ME community for Severe ME Day (August 8th)

Whether your art form is writing, photography, drawing, video, or other media you can participate. You can also submit past artwork created before you got sick. Details for submission at the link.

Please submit only one piece.

Deadline = Tuesday, July 25th

https://www.meaction.net/2023/06/30/severe-me-artists-project-2023/

#MEcfs #SevereME #MyalgicEncephalomyelitis #Art #Artists

More from #MEAction:

"Staff Share Their First-Hand Experiences from #MillionsMissing 2023"

Comments from Shalida Dobbins, Jaime Seltzer and Laurie Jones.

https://www.meaction.net/2023/06/28/staff-share-their-first-hand-experiences-from-millionsmissing-2023/

#MECFS #LongCovid #POTS #Dysautonomia #NEISvoid #Disability #Activism

@mecfs @longcovid

From Ben HsuBorger at #MEAction:

​​”Bed activism” at the Washington Monument & A Politics of Care

"… for me, protesting at the Washington Monument this past May 12th was a different—even surreal—experience."

https://www.meaction.net/2023/06/30/bed-activism-at-the-washington-monument-a-politics-of-care/

#MECFS #LongCovid #POTS #MillionsMissing #Activism #Disability

@lorq Agreed, Long Covid is real, and it's also serious.

I've been worried about increased cases of post-viral illness since March 2020, though I was not calling it Long Covid at the time.

I've had ME/CFS since 1990 and it was triggered by a virus. Many Long Covid patients meet the ME/CFS diagnostic criteria.

More info on the connection between Long Covid and ME/CFS is on this #MEAction "Stop. Rest. Pace." web page:

https://www.meaction.net/stoprestpace/

#COVID #LongCovid #MEcfs #StopRestPace

Reminder from #MEAction

"REMINDER! We plan to create something with the pillowcases sent in for #MillionsMissing. We are still working out the details.

If you could not send in a pillowcase before but would like your pillowcase to be included in our upcoming project, mail one by August 1st."

See original pillowcase page for ideas: https://millionsmissing.meaction.net/pillowcase-decoration-project/

Remember to send your pillowcase to new address! (see attached image)

#MEcfs #PwME #LongCovid #PwLC #PillowStory #MillionsMissing

They also have another shirt design. It has #MEAction written across the center with the slogan "Bold action - it's in our name" written in the circle surrounding #MEAction

Available in a variety of colors and styles.

https://www.bonfire.com/meaction-bold-action-shirt/

#MEcfs #PwME #LongCovid #PwLC #StillSickStillFighting #MillionsMissing

New "Still Sick Still Fighting" shirts from #MEAction :

"We now have new tie-dye colors & a recycled tee to go with the organic & tank options we included in the last batch.

The current batch ends in one week from today!"

https://www.bonfire.com/still-fighting-millionsmissing-2022/

#MEcfs #PwME #LongCovid #PwLC #StillSickStillFighting #MillionsMissing

From #MEAction:

"We were thrilled to see the Boston Globe run a front-page story about ME/CFS and Long COVID recently, thanks to the hard work of our New Hampshire State Chapter, which pitched the story and directed journalists to ME experts.

Our MEAction New Hampshire chapter did an amazing job pitching … a story about how ME fits into the story of Long COVID, which they published on their front page above the fold!"

https://www.bostonglobe.com/2023/05/23/metro/how-learning-treat-long-covid-can-help-those-struggling-with-chronic-fatigue-syndrome-well/

#MEcfs #LongCovid #PwME #PwLC

Ending this short thread with a few links with more resources:

#MEAction - "Stop. Rest. Pace."
https://www.meaction.net/stoprestpace/

CDC - "What is ME/CFS?"
https://www.cdc.gov/me-cfs/about/index.html

Edit: Video is from the Bateman Horne Center - https://batemanhornecenter.org/

#MEcfs #LongCovid #PEM #StopRestPace #PwME #PwLC #CDC #BatemanHorne

#MEAction Georgia Support Call
Thursday, June 15
1:00 pm to 2:00 pm EDT

Regular monthly support call (3rd Thursday of the month)

All people with ME/CFS are welcome. No previous attendance needed.

Topics vary from month to month, no preparation is required.

https://www.meaction.net/event/meaction-georgia/2023-06-15/

#MEcfs #PwME #Support #MEAction

The #MEAction 2023 fundraiser is currently at 33% of their goal of raising US $100,000 (£80,400) by June 30th.

If you're able to donate here are two links:

1. Indiegogo:

Use this link to get perks (t-shirt, mug) for different donation levels.

Note: indiegogo asks for a tip - this is optional!

https://www.indiegogo.com/projects/millionsmissing-2023#/

2. MEAction website:

Use this link if you want to make a direct donation to the group.

https://www.meaction.net/support-meaction-2023-fundraiser/

#MEcfs #LongCovid #MillionsMissing #Fundraising #Charity

Post 2 of 2:

"If you want to share your pillowcase with your story online once your pillowcase is finished please tag us on social media when you share!"

FYI, they mean twitter or insta, no fediverse account yet.

"A huge thank you to #MEAction Maryland for hosting our pillowcases!"

Original pillowcase project link has ideas:

https://millionsmissing.meaction.net/pillowcase-decoration-project/

Remember to use new address when sending pillowcases!

Deadline Aug 1st

#MEcfs #PwME #LongCovid #PwLC #PillowStory

@mecfs @longcovid

Post 1 of 2

New pillowcase project announced on #MEAction Instagram account:

"…we wanted to let you know that we will create something with these powerful pillowcases. We are still working out the details, but we are excited for what is to come.

If you could not send in a pillowcase before the #MillionsMissing deadline but would like your pillowcase to be featured in our upcoming project, you can still mail one by August 1st."

#MEcfs #LongCovid #MillionsMissing

@mecfs
@longcovid

#MEAction is doing another pillowcase thing! Must be recieved by 1 August

https://www.instagram.com/p/Cs69gSYLoFO/

#MEcfs #MyalgicEncephalomyelitis #PwME #LongCOVID

My pillowcase! https://youtu.be/4i2jgmRynhU?t=882

despite the annoying as fuck focus on longcovid on #WorldMEday, many, many of these are from people who have been sick for years and years.

20 goddamn minutes of fucking pillow cases. fuck. we are so sick.

#MEcfs #Disability #ChronicIllness #meAction #MyalgicEncephalomyelitis #PwME

The excellent film Unrest, about what life is like with ME/CFS (something I suffer from), is now available on YouTube to watch for free: https://www.youtube.com/watch?v=XOpyLTyVxco

Please share with friends & family who may not have seen it to help me raise awareness of this disease!

Thanks so much 💙 🙏

#MECFS #MyalgicE #ChronicExhaustion #ChronicFatigue #ChronicFatigueSyndrome #MEAction #MyalgicEncephalomyelitis #CFS #MillionsMissing

If you wanted to make a pillowcase but didn't send it, #meAction is doing this https://www.instagram.com/p/CsWF1zKOC7C/

It's only until 24 May unforunately but you can upload a photo of it there

#MEcfs #PwME

Washington Post article about part of NIH’s RECOVER initiative which includes studying exercise as potential treatment for long covid.

I've attached 2 screenshots, but this quote is a good summary:

“ 'Worst-case scenario, this would harm a lot of people,' said #MEAction’s U.S. advocacy director, Ben HsuBorger."

With all we know about PEM why do research on exercise as treatment? 😖

gift link: https://wapo.st/43j6duZ
#LongCovid #MEcfs #NIH #Research #RecoverInitiative

@mecfs
@longcovid

A reminder to rest from #MEAction:

"As a disability-led org, we are trying to set an example that rest is part of activism. This is hard when it feels like our world is on fire, but we know it is non-negotiable. We must balance putting our bodies on the line & building a sustainable movement."

#MEcfs #LongCovid #PwME #PwLC #ChronicIllness #StopRestPace

@mattgrayyes So sorry that you're running into PEM/PESE (post-exertional symptom exacerbation) - that's when pushing too hard causes a "crash."

If you haven't already seen it this #MEAction page has some helpful resources on pacing:

https://www.meaction.net/stoprestpace/

#LongCovid #MEcfs #PEM #ChronicIllness #StopRestPace

The "Pillow Writers" - an ME/CFS writing group - posted photos of pillowcases they sent in for the May 12th #MEAction event in Washington, DC.

https://pillowwriters.wordpress.com/2023/05/09/2023-pillowcases-meaction-demonstration-washington-dc/

#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #PillowWriters #Writers

Recording from Millions Missing 2023, the #MEAction & Body Politic livestream event on May 12:

https://www.youtube.com/watch?v=HuyeHvM8Usc

Some links for those who don't want to watch this video but do want to learn more about ME/CFS and its connection to Long Covid:

What is ME? https://www.meaction.net/learn/what-is-me/

Stop. Rest. Pace: https://www.meaction.net/stoprestpace/

#MillionsMissing #LongCovid #MEcfs #WorldMEDay #May12 #MEAwarenessDay

i hope my pillowcase ends up on their social media!! i wanna see it not in the house

wow. that thing has traveled more than i have in a few days than i have in a long time. and it gets to be outside :(

#DisabilityLifestyle #MEcfs #MEaction

https://www.youtube.com/watch?v=HuyeHvM8Usc

oh its been live streaming for an hour

brain forgot

#MEcfs #MEaction

Here's a preview of the #MEAction art installation at the Washington Monument. This is a still from a video posted earlier today.

Livestream at 11 am Pacific, 2 pm Eastern

https://www.meaction.net/event/millionsmissing-2023-watch-livestream-of-press-conference/

#MillionsMissing #StillSickStillFighting #MEAwarenessDay

#MEAction will be doing a livestream event later today, 2 - 3 pm Eastern Time:

https://www.meaction.net/event/millionsmissing-2023-watch-livestream-of-press-conference/

#MillionsMissing #MEcfs #LongCovid #MEAwarenessDay

This is today

#MEcfs #MEaction

Hello Fediverse 👋

Today is May 12, World ME Day, aka, ME/CFS Awareness Day!

https://millionsmissing.meaction.net/protest2023/

There'll be a lot of buzz on other social media, not sure about here...

Will you show ME/CFS and Long Covid folks (about 1/2 of them get ME/CFS) that you care by boosting posts tagged #MillionsMissing or #MEAwarenessDay ?

Thanks ❤️

#MEcfs #LongCovid #MEAwareness #MEAction #BodyPolitic

the #MEaction thing is is the 12th, 1100PST

There will be a livestreamed press conference and that's the day they're setting up the pillow case thing too.

It'd be cool if it matters to anynoe with the power to do something. Wouldn't that be neat? I'd love to spend another 20 years on this planet *and* not be sick, after the 20 years i have spent being sick. imagine.

https://millionsmissing.meaction.net/protest2023/

#PwME #MEcfs

@isagalaev I'll try to pass on your comment to the UK team.

The main page for Millions Missing 2023 - USA protest at Washington Memorial - does give some info & mentions the relationship with Long Covid: https://millionsmissing.meaction.net/protest2023/

"#MEAction will host #MillionsMissing 2023 in partnership with Body Politic to demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, and other infection-associated complex chronic diseases."

Update: Speaker list announced! 😁

📣 Millions Missing 2023 - Press conference and art installation

When: May 12, 11 am to 12 pm Pacific Time
Where: Washington Monument, Washington, DC

Art installation is rows of cots with pillowcases sent in by ME/CFS & Long Covid patients.

Press conference will be live-streamed, please RSVP below :blobthanks:

https://www.meaction.net/event/millionsmissing-2023-watch-livestream-of-press-conference/

#MEcfs #LongCovid #May12 #WorldMEDay #MillionsMissing #MEAction

Learn more about ME/CFS: https://www.meaction.net/learn/what-is-me/

@mecfs

Made pillowcase for the #MEaction thing and it should get there just in time hopefully

I am real fuckin tired now. Done with the day

#MEcfs #myalgicEncephalomyelitis #chronicallyill

#MEAction UK and Scotland plan an online photo campaign for Millions Missing

"We want to flood social media with powerful images that show the reality of life with ME and what people are missing, as well as the loss it also means for carers, families, schools and communities, and ask the question #CanYouSeeMENow?"

Two photo categories:

1) Your view with ME

2) Spaces people with ME are missing from

https://www.meaction.net/2023/04/14/join-the-uk-and-scotlands-digital-campaign-this-millionsmissing/

#MEcfs #PwME #May12 #MillionsMissing #UK #Scotland

A few more #MillionsMissing pillowcases, including designs some have had screenprinted and sent, especially if unable to write themselves.

More details on the May 12 protest and a range of ways to participate:
https://millionsmissing.meaction.net/protest2023/

#LongCovid #MECFS #MEAction #NEISvoid #BodyPolitic

#pwME and #pwLC have started sharing the pillowcases they’re sending to the #MillionsMissing protest on May 12, the day after the #Covid Public Health Emergency ends in the US. These will be part of an #art installation of rows of empty cots at the Washington Monument.

I was not prepared for how strongly this would evoke the #AIDS quilt.

Not too late to send one—
https://millionsmissing.meaction.net/pillowcase-decoration-project/

#LongCovid #PHE #MEAction #MECFS #NEISvoid #BodyPolitic

In the USA #MEAction and Body Politic are holding Millions Missing 2023 at the Washington Monument on the National Mall in Washington, DC on May 12th. An art installation and live press conference are planned.

Speaker info coming soon.

RSVP here:

https://www.meaction.net/event/millionsmissing-2023-watch-livestream-of-press-conference/

#MEcfs #LongCovid #Advocacy #MillionsMissing #May12

@Wolven Yep. Folks who know anything about ME/CFS (mostly researchers and patients) have been warning that the pandemic will cause an increase in disabling, post-viral conditions since early 2020.

I'm a nobody, with barely 2 working brain cells, and even I tweeted about this topic in March 2020.

See #MEAction's website for more info:

https://www.meaction.net/stoprestpace/

Final post from the thread posted by #MEAction:

"We know that not everyone is able to participate and we understand!

#MillionsMissing is for everyone and please know that we are talking to reporters about the most severely ill.

We carry you in our hearts and minds in every aspect of our activism."

#SevereME #MEcfs #LongCovid

From #MEAction:

"Million Missing 2023 is 3 weeks away!

Take a look at our Activism From Home Kit & plan how you can join in!

In order to get a greater amplification of these efforts and to get THE MOST press attention for this event, we will need help from those at home."

https://millionsmissing.meaction.net/activism-from-home/

#MEcfs #LongCovid #PwME #PwLC #MillionsMissing #May12

@mecfs @longcovid

From #MEAction -

"We are honored to share [that] #MEAction consultants Chimére L. Smith & Terri Wilder appeared on Judith Heumann's podcast, The Heumann Perspective, to discuss #LongCovid & the connection with #MECFS.

The podcast was recorded weeks before Judith passed away."

https://judithheumann.com/long-covid/

#LongCovid #MEcfs

@mecfs
@longcovid

On May 12–the day after the US Public Health Emergency will lapse—#MEAction & #BodyPolitic are holding a protest at the Washington Monument in DC to demand action on #LongCovid #MECFS & related diseases.

Inspired especially by the January #NichtGenesen protest in Germany, it will have rows of cots w/pillowcases decorated by patients & allies.

Details on sending a pillowcase: https://millionsmissing.meaction.net/pillowcase-decoration-project/

And more ways to participate: https://millionsmissing.meaction.net/protest2023/

#MillionsMissing #NEISvoid #Covid

Update: Speaker list announced! 😁 See link below

====
From #MEAction:

Millions Missing 2023: Watch Livestream of Press Conference

May 12,11:00 am to 12:00 pm Pacific Time

"Join #MEAction in partnership with Body Politic for #MillionsMissing 2023 held at the Washington Monument on the National Mall in Washington, DC on May 12th that will feature an art installation and press conference."

RSVP here:

https://www.meaction.net/event/millionsmissing-2023-watch-livestream-of-press-conference/

#MEcfs #LongCovid #Advocacy #May12 #WorldMEDay

🧵
#MEAction & Patient-Led Research Collaborative published a Clinician’s Pacing & Management Guide for ME/#CFS & #LongCOVID.

The updated version of this useful guide contains concise descriptions of the illnesses & their symptoms, & provides guidance for pacing to help prevent post-extertional malaise (#PEM). Citations to the relevant literature & other resources are listed.

https://www.meaction.net/wp-content/uploads/2023/02/Pacing-Guide-Clincians.FINAL2_.pdf

@longcovid @mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #PwME #MEeps

1/

From #MEAction:

"#MEAction is now hiring an Activist and Volunteer Coordinator! Please help us spread the word!

You can be located anywhere in the United States; #MEAction is entirely virtual."

More details here: https://meaction.net/openings/

#MEcfs #PwME #Hiring #Nonprofit #RemoteWork

@mecfs

“What Does It Mean to Really, Truly Rest?” (Dec 22)

https://www.self.com/story/what-does-rest-mean

Summary from Science for ME forum:

Article explores the concept of resting after having had Covid & mononucleosis. Margareta Asp & #MEAction's Jamie Seltzer provide valuable insight on the importance of resting & how to do it. Seltzer says: "This isn't something that you can push through. This is one of those knots where the harder you pull, the tighter it gets"

#mecfs #CFS #LongCovid #pwme @mecfs @longcovid

A few more quotes:

"… long COVID patients need to prioritize their own energy regardless of what they're being told by those who don't understand the illness."

Spouses need education on Long Covid because
"any kind of lack of awareness or understanding in a family member or close support could potentially isolate the person struggling with long COVID."

For resources on pacing check out this #MEaction website:

https://www.meaction.net/stoprestpace/

#COVID #LongCovid #Medscape #MEcfs #Pacing #StopRestPace