ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

How ME/CFS shrinks your world, bit by bit

art by Kornelia Paulsen

@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

💙 It's May 12th, International ME/CFS Awareness Day 💙

I'm one of the millions around the world who has ME/CFS.

I'm 63 years old and I've been dealing with ME/CFS for over 34 years, since January 1990.

(attached photo is from last year)

1/n

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Back to ME/CFS, for a few years 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

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, (edited )
@ahimsa_pdx@disabled.social avatar

This year 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

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

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

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

💙 It's May 12th, International ME/CFS Awareness Day 💙

I'm one of the millions around the world who has ME/CFS.

I'm 63 years old and I've been dealing with ME/CFS for over 34 years, since January 1990.

1/n

@mecfs

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

Today is International ME/CFS Awareness Day!

I'm going to try to post a few things on this topic, and I will definitely be boosting a whole lot of posts from other folks!

Just a warning for anyone who might be overwhelmed by my higher than usual level of posting.

Feel free to mute me for the day (love that Mastodon feature!), or filter out related hashtags, or even unfollow - whatever works for you! ❤️

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Personal story from @ehashman for International ME/CFS Awareness Day:

https://hashman.ca/me-cfs/

Quote:

"One of my acquaintances cried when they last saw me in person. But frankly, I love my wheelchair.

I am not "wheelchair-bound" — I am bed-bound, and the wheelchair gets me out of bed. My chair hasn't taken anything from me."

Also included: a list of ME/CFS advocacy groups and what you can do to help ❤️

sminez, to random
@sminez@hachyderm.io avatar

Today is ME awareness day. My amazing wife Katie has written up what it is like living with ME and shared her story over on Instagram. If you can, please take the time to read it through and find out more about what you can do to help people living with ME:

https://www.instagram.com/stories/katieanderson_morrison/3366249637142833683?utm_source=ig_story_item_share&igsh=MXR6Ym4xNGMydnE5eA==

https://worldmealliance.org

sminez,
@sminez@hachyderm.io avatar

Here's how you can help raise awareness for world ME day

https://worldmealliance.org/docs-category/worldmeday2024actions/

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

#MEcfs #LongCovid #MyalgicEncephalomyelitis #MillionsMissing #MEAwareness #WorldMEDay #TeachMETreatME

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From :

"We are excited to announce the kick-off of 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

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, to mecfs
@ahimsa_pdx@disabled.social avatar

The next online support group from Bateman Horne Center will be an ME/CFS Awareness Event

Tuesday, May 14
Noon Pacific / 3 PM Eastern / 8 PM Great Britain & Ireland

More details:
https://batemanhornecenter.org/event/online-support-group-69/

Advance registration required

@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From Solve M.E.

"A #GlobalVoiceForME on World ME Day 2024"

https://solvecfs.org/solve-a-globalvoiceforme-on-world-me-day-2024/
"As we approach World ME Day on May 12th, 2024, Solve joins the global community in shedding light on the pressing issues surrounding Myalgic Encephalomyelitis (ME)"

"In the coming months, Solve and the World ME Alliance will be announcing actions you can take to create change"

Until then "spread the word" & "educate yourself" about ME!

@mecfs

#MEcfs #PwME #MyalgicEncephalomyelitis #SolveME #WorldMEDay

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

And here's a post about World ME Day 2024 from the World ME Alliance:

https://worldmealliance.org/worldmeday/

@mecfs
@longcovid

#MEcfs #COVID #COVID19 #LongCovid #PostCovid #WorldMEDay

tomkindlon, to cfs
@tomkindlon@disabled.social avatar

Press release:

"#WorldMEDay raises awareness of devastating symptom impacting millions post-COVID: 22 organizations from around the world unite to promote awareness of ME — the disease where pushing harder can make you sicker"

https://solvecfs.org/wp-content/uploads/2023/04/World-ME-Day-2023-Solve-press-release.pdf

#WorldMEDay2023 @mecfs @cfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #CFSME #MEeps

tomkindlon, to cfs
@tomkindlon@disabled.social avatar

#MyalgicE #May12 #May12th #MyalgicEncephalomyelitis #MEAwarenessDay #MillionsMissing @mecfs @cfs #WorldMEDay2023 #WorldMEday

PurpleSpeedwell, to mecfs
@PurpleSpeedwell@disabled.social avatar

Some of the symptoms of #MyalgicEncephalomyelitis
#MEAwarenessDay #WorldMEDay #MECFS #PwME #LongCovid #PwLC
@mecfs

CyruxiME, to random

Today is #MEAwarenessDay #WorldMEDay. I’ll just say I wish I could:

  • digest food
  • talk & listen for >10s
  • tolerate daylight
  • wash myself
  • sit & stand up, esp to use the bathroom & the kitchen
  • think
  • take a walk

Please cure #MECFS. Give the #MillionsMissing #pwME their lives back.

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

Update: Speaker list announced! 😁

📣 Millions Missing 2023 - Press conference and art installation

When: May 12, 11 am to 12 pm Pacific Time
Where: Washington Monument, Washington, DC

Art installation is rows of cots with pillowcases sent in by ME/CFS & Long Covid patients.

Press conference will be live-streamed, please RSVP below :blobthanks:

https://www.meaction.net/event/millionsmissing-2023-watch-livestream-of-press-conference/

#MEcfs #LongCovid #May12 #WorldMEDay #MillionsMissing #MEAction

Learn more about ME/CFS: https://www.meaction.net/learn/what-is-me/

@mecfs

Private
ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@mecfs The Science For ME forum has a thread listing some of the events planned for World ME Day.

https://www.s4me.info/threads/me-awareness-day-week-month-may-2023.31817/

Most are scheduled for Friday, May 12 but some are on different days.

Blue Sunday, a fundraiser, is scheduled for Sunday, May 14.

#MEcfs #MillionsMissing #May12 #WorldMEDay

IrishMECFSAssociation, (edited ) to mecfs

May is Myalgic Encephalomyelitis (ME) Awareness Month.

You can help by liking and/or retooting this video. This 2017 TED talk features @jenbrea.

https://youtu.be/Fb3yp4uJhq0

@mecfs @cfs

Day #1

IrishMECFSAssociation,

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

(3 minutes)
https://www.youtube.com/watch?v=IOflARSgNnE

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

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