USA: News from #MEAction

#MillionsMissing Week is Here: #TeachMETreatME in Action!

https://www.meaction.net/2024/05/07/millionsmissing-week-is-here-teachmetreatme-in-action/

The website has the schedule for upcoming "Teach ME, Treat ME" events.

There's also a link to this "Show Up From Home" toolkit (Google doc) with other actions you can do:

https://docs.google.com/document/d/...JmmydaJIi4BQDQDew/edit#heading=h.vyt35j7pvgd3

Regarding timing of social media posts:

"We will heavily focus on this campaign through the 12th of May, which is #WorldMEDay. If you want to pick only one day to post then May 10 - 12th is probably best. But, posting anytime this week is great!"

 

Saturday May 18 Caregiver Support Call (for caregivers of people with ME (#MyalgicEncephalomyelitis), #LongCOVID and associated conditions)
https://www.meaction.net/event/me-caregiver-support-call/2024-05-18/

15:30 ET/20:30 in Great Britain & Ireland

Find the time in your time zone here: https://www.timeanddate.com/worldcl...r+Support+Call+&iso=20240518T1530&p1=179&ah=1

 

#TeachMETreatME: Celebrating An Impactful Campaign

https://www.meaction.net/2024/05/17/teachmetreatme-celebrating-an-impactful-campaign/

Lots more details in the article - too long to put in a quote!

But here's the schedule for future "Teach ME, Treat ME" events:

https://meaction.controlshift.app/calendars/millionsmissing-2024

 

#MEAction Scotland publishes impact statement

https://www.meaction.net/2024/05/23/meaction-scotland-publishes-impact-statement/

Direct link to impact statement:

https://www.meaction.net/wp-content...ion-Scotland-Impact-Statement-22-23_final.pdf

 

News from #MEAction, from a post on Bluesky by Jaime Seltzer:
(line breaks added)

"#MEAction’s narrative activity study with Mayo Clinic opens today!

We’re looking for people with ME/CFS or Long COVID with PEM to share their experiences.

The survey will be open from 5/24/2024 to 6/23/2024." (May 24 to June 23)​

It's a pretty long survey (time estimate says 20-90 minutes?) but you can do it in sections and come back.

Anyone who meets these three conditions can complete the survey:

* 18+ years old
* Have ME/CFS and/or Long COVID
* Have tried symptom contingent pacing as an activity management strategy​

Link to survey:

https://surveys.mayoclinic.org/jfe/form/SV_2auWxMckjo7s04u​

Link to Bluesky post where I found the information:

https://bsky.app/profile/exceedhergrasp1.bsky.social/post/3ktapu6o3bc2e​

I was hoping to post a link to a more definitive source but have not seen a post on the MEAction website or from their mailing list.

EDIT: I posted a short thread on Mastodon about this, just in case anyone with an account there wants to boost it. As far as I know none of the MEAction folks have accounts on Mastodon/Fediverse.

Also, I have not yet done the survey myself.

 

There are two versions of the survey. It can be cut short after a few questions, or continued for a total of 40-60 minutes. But it's super easy to come back to it, I just kept a pinned tab (a bookmark would work) and it just loaded back to where I was last.

 

June 15
CAREGIVER SUPPORT CALL ( for caregivers of people with ME (#myalgicencephalomyelitis), #LongCOVID and associated conditions)

https://www.meaction.net/event/me-caregiver-support-call/2024-06-15/

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

Find the time in your time zone:
https://www.timeanddate.com/worldcl...ER+SUPPORT+CALL&iso=20240615T1530&p1=179&ah=1

 

Just did it. It took about 45 minutes to do the whole thing. I wish there was some indicator that I could pause at any time and all my answers up to that point would be saved (maybe it did say that at the start). But I pushed through and was feeling pretty tired by the end. But I liked most of the questions.

 

Severe ME Artists Project 2024

Call for submissions

https://www.meaction.net/2024/06/26/severe-me-artists-project-2024/