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/

 

Saturday July 20
CAREGIVER SUPPORT CALL ( for caregivers of people with ME (#MyalgicEncephalomyelitis ), #LongCOVID and associated conditions)
https://www.meaction.net/event/me-caregiver-support-call/2024-07-20/

3:30PM ET/8:30 PM in Great Britain & Ireland
Find the time in your time zone here:
https://www.timeanddate.com/worldcl...+SUPPORT+CALL+&iso=20240720T1530&p1=2416&ah=1

 

From the #MEAction mailing list:

Full email here:

https://mailchi.mp/meaction/mdh-long-covid-program-awards-meaction-3-yr-grant-7302024

 

For some reason I'm liking Minnesota a lot these days.

 

Today from Minnesota, @shak8

(hopefully mods are okay with sharing post from USA thread)

WXPR: "Long COVID patient's persistent struggles highlight urgent need for more research"

'Hanlon used to hold a managerial role at a Fortune 500 company in Minneapolis'

'In November, 2017, he was finally diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, as well as POTS, or Postural Orthostatic Tachycardia Syndrome.'

'When the pandemic first hit, he was volunteering at an advocacy organization called ME Action.'

“They sounded the alarm pretty quick, saying, if this is really a worldwide pandemic with a very infectious pathogen, there could be a wake of these post infectious illnesses that, unfortunately, are just very much abandoned by the medical silos,” he said.'

'After Hanlon’s second COVID-19 infection, his condition deteriorated further and he was diagnosed with long COVID.'

'As Director of Advocacy and Outreach for the Minnesota ME/CFS Alliance, Billy Hanlon advocates for long COVID, POTS, ME, and other conditions to get more funding for research.'

“We're fighting together for this common goal to just to liberate us all from these insidious diseases, and hopefully, we can get that secured funding that it will take for these breakthroughs, because it will take, you know, hard science that that is necessary to be able to make the advancements that can lead to intervention,” he said.

"In April, Senator Bernie Sanders introduced the Long COVID Moonshot Act, which would provide $1 billion in mandatory funding per year for 10 years to the National Institutes of Health (NIH) to respond to the Long COVID crisis with more urgency."

Hanlon hopes that the Act passes.

 

#MEAction has posted a news item on their website about this grant from the Minnesota Department of Health:

https://www.meaction.net/2024/07/30...sota-department-of-health-long-covid-program/

 

Saturday, August 17

CAREGIVER SUPPORT CALL ( for caregivers of people with ME (myalgic encephalomyelitis), Long COVID and associated conditions)

https://www.meaction.net/event/me-caregiver-support-call/2024-08-17/

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

Find the time zone in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=Saturday,+August+17&iso=20240817T1530&p1=2416&ah=1

 

September 4th:

https://mailchi.mp/meaction/teachmetreatme-we-cant-believe-these-numbers-942024

 

Saturday, September 21 CAREGIVER SUPPORT CALL ( for caregivers of people with ME (#MyalgicEncephalomyelitis), #LongCOVID & associated conditions)
https://www.meaction.net/event/me-caregiver-support-call/2024-09-21/

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=20240921T1530&p1=179&ah=1

 

The #MEAction Network

Welcome to our first #MedEdMonday! We are excited to introduce the first video in a four-part series focusing on post-exertional malaise and pacing created by Patient-Led Research Collaborative and #MEAction. https://ow.ly/AvWw50Tjcro

Our first episode focuses on understanding post-exertional malaise and features an excellent presentation with Dr. Brayden Yellman from Bateman Horne Center with a follow-up by Chimére L. Sweeney. Dr Yellman is a board-certified physician in #MEAction. This presentation focuses on the importance of pacing and PEM (post-exertional malaise). Pacing is a crucial intervention for ME and Long COVID.

Let us know what you think in the comments. Thank you to Dr. Yellman for your time and effort.
#pwME #LongCovid #MECFS #MyalgicEncephalomyelitis #MedEd

Image description: Screenshot from a video showing Dr. Yellman (white man with short hair wearing a tie and sweater) sitting in an office speaking to the camera. Text above: Understanding Post-Exertional Malaise with Dr. Brayden Yellman. Text below: #MedEdMonday Four-part video series created by Patient-led Research Collaborative and #MEAction

 

Summary thread:
https://threadreaderapp.com/thread/1833934571114823712.html

 

Saturday, October 19

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

https://www.meaction.net/event/me-caregiver-support-call/2024-10-19/

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

Find the time in your time zone here
https://www.timeanddate.com/worldcl...ER+SUPPORT+CALL&iso=20241019T1530&p1=179&ah=1