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/
MEAction said:
We are excited to announce the kick-off of #MillionsMissing 2024 – our ongoing campaign to Teach ME and Treat ME by educating medical providers across our nation’s hospital systems and medical schools about myalgic encephalomyelitis (ME).

Throughout the spring, summer and fall, #MEAction teams are hosting 13 medical education events to encourage medical providers to take the Mayo Clinic Proceedings Continuing Medical Education (CME) course on ME, and presenting medical education flashcards on ME, Long COVID, and other infection-associated chronic illnesses to medical schools. By engaging with hospital systems and medical schools directly, and providing the tools they need, we’re fostering bastions of ME clinical care across the country and beyond.
...

Meanwhile, #MEAction is pursuing opportunities to collaborate with researchers more deeply at Georgetown, Emory, Brown, Mayo and University of Montreal. Researchers at these five institutions have submitted Letters of Intent to signify their formal interest in collaborating with #MEAction in our ongoing #TeachMETreatME initiative. These major institutions have an enormous influence on our healthcare system, and we’re thrilled at this massive opportunity to move the needle on ME healthcare.

Reach out to YOUR clinician! We want to have the biggest impact possible this May. Please email your clinician and ask them to take the Mayo CME, as well, using our email template.
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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!"
 
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#TeachMETreatME: Celebrating An Impactful Campaign

https://www.meaction.net/2024/05/17/teachmetreatme-celebrating-an-impactful-campaign/
#MEAction said:
We are THRILLED to share the rolling successes of our #TeachMETreatME campaign with you, as we report back on the amazing medical education events that have taken place so far – with many more to come in the upcoming months!

(And don’t miss the global #MillionsMissing events later in the article!)

Over the past several months, clinicians and medical students across the U.S. have attended presentations, roundtables and conferences to learn about ME/CFS – and how to take the Mayo Clinic Proceedings Continuing Medical Education course on ME/CFS – thanks to the incredible work of #MEAction advocates who dedicated so much to make this campaign a success!

In the UK, #MEAction UK advocates pulled off a wonderful Postcard to Doctors Campaign encouraging medication professionals to take a CDP module on ME.
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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/
#MEAction said:
#MEAction Scotland is pleased to publish our impact statement, which covers March 2022 to May 23. It reports on our work to campaign for effective support, create stronger advocates and raise awareness. As a small group of volunteers, it’s unfortunately not always possible to continually update on our activities as they happen, so the statement brings together some key successes.

The work we undertake is wide ranging in our fight for a Scotland that treats people with ME with respect and offers the care and support they deserve. We have engaged with the Scottish Government and MSPs, held Millions Missing events, and supported the education of healthcare professionals.

Take a look at our impact statement to see more.
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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:


Link to Bluesky post where I found the information:


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.
 
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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.
 
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ahimsa said:
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:


Link to Bluesky post where I found the information:


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.
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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.
 
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From the #MEAction mailing list:
#MEAction said:
Breaking news! #MEAction has just been awarded a 3-year grant by the Long COVID Program of the Minnesota Department of Health (MDH) to address the impacts of Long COVID, ME/CFS, and related conditions, across the state and to serve disproportionately impacted communities.

#MEAction’s work will focus on better connecting Minnesotans with ME/CFS, Long COVID, and related conditions to vital home and community-based support services that they often struggle to effectively access. These grant funds will allow us to both hire Minnesota-based professionals, and support current #MEAction staff, to help Minnesotans navigate accessing services to meet their daily needs, and to carefully evaluate the effectiveness of this funded service delivery.

This Minnesota-focused capacity-building grant builds off our ongoing efforts to launch a national Canary Corps program to connect people with ME/CFS and Long COVID to local disability services and supports. We look forward to the opportunity to develop best practice models of care and cross-learning between both our state and national strategies to help meet the needs of our communities.
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Full email here:

https://mailchi.mp/meaction/mdh-long-covid-program-awards-meaction-3-yr-grant-7302024
 
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.
 
ahimsa said:
From the #MEAction mailing list:

Breaking news! #MEAction has just been awarded a 3-year grant by the Long COVID Program of the Minnesota Department of Health (MDH) to address the impacts of Long COVID, ME/CFS, and related conditions, across the state and to serve disproportionately impacted communities.

...​
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#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/
 
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September 4th:
We're excited to share some numbers with you from our TeachME, TreatME campaign we launched last spring to educate clinicians and medical students about myalgic encephalomyelitis (ME)! The campaign has been a herculean effort by #MEAction staff and our 16 incredible teams across the U.S and U.K., and we are beyond proud with the results so far!
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  • 19 medical education events across the U.S. and U.K
  • 402 clinicians attended in-person events
  • 100,000 total views of the Mayo Clinic Proceedings paper on ME/CFS
  • 421 clinicians took the Mayo CME or another CME as part of the initiative!
  • Researchers and clinicians from five major health systems expressed interest in ongoing med ed partnerships
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The campaign is ongoing! You can still email your doctor in the U.S. and ask them to take the Mayo Clinic CME (here), or share a flier with them in person. If you know any medical students, please share our ME/CFS flashcards with them (here). Meanwhile, we still have two upcoming events, and #MEAction is working to secure partnerships with 5 major medical systems across the U.S. to build up their ME care. Watch this space!
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https://mailchi.mp/meaction/teachmetreatme-we-cant-believe-these-numbers-942024
 
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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

https://twitter.com/user/status/1833934571114823712
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Dolphin said:
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
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2024-09-22 12_43_19-Understanding Post-Exertional Malaise - Dr. Brayden Yellman - YouTube.png

https://twitter.com/user/status/1837821994290589842
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Summary thread:
https://threadreaderapp.com/thread/1833934571114823712.html
 
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