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"

#MECFS #pwME #LongCovid #PwLC

1/n

#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

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 the #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

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