If you've read this far, thanks so much for listening!

And if you have the ability (only if you are not struggling yourself!) then you can make a donation to #MEAction here:

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

6/6

@mecfs

Sharing information about the Mayo ME/CFS document (Diagnosis and Management of ME/CFS) - and the associated CME (Continuing Medical Education) - is a great way to immediately improve patient care for people with ME/CFS.

Remember, roughly half of Long Covid patients meet the ME/CFS diagnostic criteria.

Need help crafting an email to send to your doctor? Here's a template:

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

5/n

@mecfs

This year #MEAction is focusing on educating medical professionals with a "Teach ME, Treat ME" campaign.

And you can help!

Just share this link to the Mayo ME/CFS CME (Continuing Medical Education) with your doctor:

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

You can also print the document (8 pages) to bring to your next appointment. I've given it to several doctors - and so has my husband, who does not have ME/CFS!

4/n

@mecfs

Back to ME/CFS, for a few years #MEAction has used the phrase "Millions Missing" which has at least 3 meanings:

* Millions of patients are missing from their lives - work, school, exercise, socializing

* Millions of dollars are missing from ME/CFS research

* Millions of doctors are missing ME/CFS education - often not taught in med schools

Here's a pillowcase I made for last year's demonstration and the caption I wrote.

3/n

@mecfs

12/
May 12 is International Myalgic Encephalomyelitis (ME) Day (and May is ME Awareness Month) You can help by sharing and/or liking this (well-made) video.

(3 minutes)

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

Day #12
#MyalgicE #MyalgicEncephalomyelitis #May12 #May12th #WorldMEDay2023
#WorldMEday #MEAwarenessDay
@mecfs

12/

May 12 is International Myalgic Encephalomyelitis (ME) Day (and May is ME Awareness Month).

You can help by sharing and/or liking this image.

Day #12

#MyalgicE #MyalgicEncephalomyelitis #May12 #May12th #MEAwarenessDay #MillionsMissing
@mecfs

I’m going to drop my favourite educational material below for those interested.

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

TLDR:
- ME is triggered by infection in the majority of patients.
- ME has no approved treatments and no cure.
- ME is a relapsing-remitting condition.
- The hallmark symptom is post-exertion malaise (a reduction in functioning after physical or cognitive exertion).
- On quality of life surveys, people w/ ME score lower than those with MS, heart failure and cancer.

Of course, many barriers are also caused by society's lack of awareness and accommodations for people with low energy.

This is a big gap in the popular understanding of #accessibility.
#mecfs

We met Ayaan at the #LiegendDemo, who told us about accommodations during high school exams. Its possible to get extra time during an exam. But for people with low energy thats not helpful as they cant sit & concentrate for so long. They would rather need exams broken up into shorter units.

This is just one example of how the accessibility needs of people with low energy are widely ignored by society and politics. And it’s time for that to change!

Thanks to everyone who organised and took part in the Liegend Demo!
#MEAwarenessDay #LiegendDemo #MillionsMissing