tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

MEAction : Celebrating An Impactful Campaign

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

"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."

@mecfs

1/

tomkindlon,
@tomkindlon@disabled.social avatar

2/

In the UK, #MEAction UK advocates pulled off a wonderful Postcard to Doctors Campaign encouraging medication professionals to take a CPD module on ME"

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

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From #MEAction

"#TeachMETreatME: Celebrating An Impactful Campaign"

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

"We are THRILLED to share the rolling successes of our 'Teach ME Treat ME' 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!"

Article has lots more details along with reports of other Millions Missing events! 😁

1/2

@mecfs

#MEcfs #PwME #LongCovid #PostCovid #MedEd #MedMastodon #MillionsMissing

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar
ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

I've joined the "Teach ME, Treat ME" campaign from

We're asking for ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) to be taught in medical schools and via continuing education (CME)

⭐️ And you can help! ⭐️

Please share this CME with your healthcare providers:

https://millionsmissing.meaction.net/treatme/

Need help crafting an email? Here's a template:

https://docs.google.com/document/d/15jJZ3-eHQq0pVsshfK-E0so2ucvrBWAzK8en82Xfnfo/edit

Thanks ❤️

@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

May 3rd presentation by Todd Davenport (about 1 1/2 hours) on MECFS & Long Covid:

"Post-Exertional Neuroimmune Exhaustion as a Bioenergetic Condition"

https://www.youtube.com/watch?v=vuoVAP1CC1Y&t=720s

(link skips part of intro)

I've not been able to watch this myself yet but wanted to pass it on.

@mecfs
@longcovid

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

I've attached a screenshot showing the session outline for this talk.

@mecfs @longcovid

EdibleFuchsia,
@EdibleFuchsia@social.coop avatar

@ahimsa_pdx @tomkindlon @mecfs @longcovid thanks for the share looks informative

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

This short video (about a minute) from #MEAction asks people with ME/CFS, "How long did it take you go get diagnosed?"

(ME/CFS = myalgic encephalomyelitis / chronic fatigue syndrome)

https://www.youtube.com/watch?v=tnzz2QwwaMs

I'm "lucky" because it only took me 5 years to get a diagnosis vs. an average of over 8 years (from the 417 responses they got).

What's your answer? 🤔

1/2

@mecfs

#MEcfs #PwME #TeachMETreatME #MedEd #MedMastodon

ContraindiKate,
@ContraindiKate@disabled.social avatar

@ahimsa_pdx 22 years.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

You don't have to be an ME/CFS or Long Covid patient to help us improve medical education.

Join 's "Teach ME, Treat ME" campaign. Contact your doctor to tell them about the Mayo Clinic CME:

https://millionsmissing.meaction.net/treatme/

Learn more at https://millionsmissing.org

2/2

@mecfs
@longcovid

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Only a few days left until May 12, World ME Day!

My advocacy actions may be small, but I'm trying to help spread the word! 😊

If you want to join in the MEAction group has a list of suggestions in this "Show Up From Home" toolkit (Google doc):

https://docs.google.com/document/d/163DeV93SRYNm7Aq2zC_uoaU7NIJmmydaJIi4BQDQDew/edit#heading=h.vyt35j7pvgd3

1/n

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

I gave this paper to my new primary care doctor recently (old doctor retired) During my medical history he said, "You must be a severe case."

I said, "I'm moderate. Severe cases are bedbound."

Like most doctors he didn't realize how disabling ME/CFS can be.

Doctors need accurate information! And roughly half of Long Covid cases meet the ME/CFS diagnosis so it's even more important now.

Please join the campaign ❤️

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

3/n

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

If you have the financial means (and only if you are not struggling yourself!!) please consider making a donation to

Thank you ❤️

https://www.meaction.net/millionsmissing-fundraiser-2024/

4/n

@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From #MEAction:

"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)."

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

See link for upcoming events.

1/3

@mecfs
@longcovid

#MEcfs #LongCovid #TeachMETreatME #MedEd #MedMastodon

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

This toolkit from lists all the different "Show Up From Home" actions that you can do:

https://docs.google.com/document/d/163DeV93SRYNm7Aq2zC_uoaU7NIJmmydaJIi4BQDQDew/edit#heading=h.vyt35j7pvgd3

And here's a link for anyone reading this who wonders, "What is ME/CFS?"

Roughly half of Long Covid patients meet the ME/CFS diagnostic criteria.

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

3/3

@mecfs @longcovid

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Here's a bonus post for this thread because I wanted to post this screenshot with a selfie of Jaime Seltzer! 😁💪

@mecfs @longcovid

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

It's May! That means it's ME Awareness month, with World ME Day on May 12th!

I'm going to try to post about ME Awareness events over the next few weeks.

This year has a campaign called "Teach ME, Treat ME" which will

"… educate hospital systems and medical schools about ME/CFS by encouraging medical schools to Teach ME, and major hospitals to Treat ME"

Here's the event schedule:

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

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

There's an overview of #MEAction's "Teach ME, Treat ME" campaign here:

https://millionsmissing.meaction.net/mm24/

I'm not sure anyone is in the phase of planning new events at this point, but this page does have good information, including a link to the "Show Up From Home" toolkit.

I've attached an image with an overview - list of activities according to energy required - but please go to the actual file for more details! 😁

(edited for typos)

@mecfs

glasspusher,
@glasspusher@beige.party avatar

@ahimsa_pdx @mecfs

To those who are clueless, like I was until a minute ago, ME/CFS stands for myalgic encephalomyelitis / chronic fatigue syndrome

https://www.cdc.gov/me-cfs/index.html

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From :

"… we are asking the community to submit a quick video recording sharing how long it took to receive a ME diagnosis, to be featured during the campaign week.

This recording will highlight why there is a need for more medical providers to be educated about ME…"

Full email includes script suggestions & other details:

https://mailchi.mp/meaction/lights-camera-action-new-video-project-to-support-teachmetreatme

Video submission deadline is Tuesday, April 30, 11 AM Pacific

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

If you can't do a video, there are several other actions you can do to support the Teach ME, Treat ME campaign for Millions Missing 2024.

Here's a link to the "show up from home" toolkit (google doc):

https://docs.google.com/document/d/163DeV93SRYNm7Aq2zC_uoaU7NIJmmydaJIi4BQDQDew/edit#heading=h.vyt35j7pvgd3

@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

email:

"Teach ME Treat ME will be here in the next few weeks! While many of you are preparing to host medical education events, we know that thousands of you will be participating from home!

We are beyond excited to share the Show Up From Home Toolkit! This toolkit lays out an array of ways you can take action from home based on your energy level."

https://mailchi.mp/meaction/millionsmissing-2024-show-up-from-home-toolkit

@mecfs

ahimsa_pdx, (edited )
@ahimsa_pdx@disabled.social avatar

The "Show Up From Home" toolkit rates the "Teach ME Treat ME" advocacy tasks by energy required, from lowest to highest.

I want to acknowledge that folks with severe ME may be unable to do even the low energy activities since they are in survival mode 😔

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Here's a link to the Mayo Clinic CME (Continuing Medical Education) class for ME/CFS that was mentioned in previous post:

https://ce.mayo.edu/internal-medicine/content/mayo-clinic-proceedings-diagnosis-and-management-myalgic-encephalomyelitischronic-fatigue

Screenshot showing target audience and learning objectives is attached.

@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Email from :

"We are less than a month away from launching 2024, and we are thrilled at the success we’re already seeing with the campaign!

We know the impact of will be HUGE with thousands more clinicians across the country being educated on how to diagnose and treat the ME. Some of these clinicians will become the specialists we so desperately need."

Full email -

https://mailchi.mp/meaction/teachmetreatme-payoff-will-be-huge

@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Jaime Seltzer posted a thread about on Bluesky:

"The Teach ME Treat ME campaign is turning out to be an incredibly successful campaign for Millions Missing this year! Local and state groups are doing in-person medical education events; is also engaging in longer-term partnerships to create products to transform ME/CFS care. (1/6)"

Full thread here:

https://bsky.app/profile/exceedhergrasp1.bsky.social/post/3kpfuknclok22

@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

has new t-shirts for Millions Missing 2024 (May 12)

One design has the new "Teach M.E., Treat M.E." slogan (about educating doctors) while the other one says Millions Missing 2024.

https://mailchi.mp/meaction/millionsmissing-2024-new-t-shirts-available

Multiple styles and colors are available in both designs.

Order by April 1st to make sure there's plenty of time for it to be shipped before May 12.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Want to learn more about the "Teach M.E. Treat M.E." program? Maybe sign up to be a volunteer?

Here's an email from with more details:

https://mailchi.mp/meaction/millionsmissing-2024-off-to-a-great-start





ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

An update from :

"Millions Missing 2024 is off to a great start! We are so thrilled that Teach ME, Treat ME is resonating with our community. Over 100 people attended our kickoff session last month …"

Interested in signing up to host an event? Or volunteer with a team? Sign up here:

https://airtable.com/applFMfta8DUyjiZP/pagzgzB35i6URqvA2/form

Full email here: https://mailchi.mp/meaction/millionsmissing-2024-off-to-a-great-start

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar
ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From :

"We are thrilled to announce our vision for 2024!

This year, we are launching a national campaign to educate hospital systems and medical schools about ME/CFS by encouraging medical schools to Teach ME, and major hospitals to Treat ME

Our goal is to hold in-person events at these institutions the week of May 3 to May 12 …

WE NEED YOU to help pull off a campaign at this scale!"

https://millionsmissing.meaction.net/mm24/?mc_cid=3954d434a7

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

"Organize an event at a medical school

Our goal is to set up medical education events at medical schools.

For providers in the US, we ask them to take our CME, recently released by Mayo Clinic Rochester and #MEAction. The tenor of these events will be similar to the #MillionsMissing events being held at hospitals with well-designed signage and bright colors. The goal will be to have medical education available on-site via our Mayo Clinic Proceedings CME …"

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

"Join the Information Session:

We will be hosting an information session on how to organize an event at a hospital or medical school on January 6th at 11 a.m. PT / 2 p.m. ET / 7 p.m. GMT."

Registration link for the Millions Missing 2024 Informational session:

https://www.meaction.net/event/millionsmissing-2024-informational-session/

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