ahimsa_pdx, 17 days ago

In past years I've shared stories of my formerly active life.

I'm skipping that this year because some folks interpreted my story in an ableist way. They thought I meant:

"See how active and productive I was? We need treatments so we can be productive again!"

No, I only shared my story to push back on false narratives that being fit and healthy protects you from disabling chronic illness.

Anyone can get ME/CFS or Long Covid!

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

2/n

@mecfs

#COVID #MEcfs #LongCovid

ahimsa_pdx, 17 days ago

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

#MillionsMissing #MEcfs #WorldMEDay #MEAwarenessDay

I've been sick so long, since January 1990, that I don't even recognize my former self. I've lost the ability to do so many things. I feel like a caged butterfly beating its wings against the bars. Marjorie

ahimsa_pdx, 17 days ago (edited 17 days ago)

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

#MedEd #MedMastodon #TeachMETreatME #MEcfs #WorldMEDay #MEAwarenessDay

ahimsa_pdx, 17 days ago

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

#MedEd #MedMastodon #TeachMETreatME #MEcfs #LongCovid #WorldMEDay #MEAwarenessDay

ahimsa_pdx, 17 days ago

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

#MEcfs #PwME #LongCovid #MEAction #MEAwarenessDay #WorldMEDay