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, 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, to mecfs
@ahimsa_pdx@disabled.social avatar

CDC post for ME/CFS International Awareness Day, May 12th:

https://www.cdc.gov/me-cfs/resources/awarenessday.html

"From May 6 to 12, CDC will light the Atlanta Visitor Center in blue to recognize ME/CFS International Awareness Day. We are honored to have people with ME/CFS and their caregivers join us to kick off this event."

ME/CFS = myalgic encephalomyelitis / chronic fatigue syndrome

About half of Long Covid patients meet ME/CFS diagnostic criteria

@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

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

A short video (< 2 minutes) about ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome):

https://www.youtube.com/watch?v=X6f4zCe2ZtA

And a quick reminder that several research studies have found that roughly half of Long Covid patients meet ME/CFS diagnosis.

(edited for typos)

#MEcfs #LongCovid #POTS #Dysautonomia #ChronicIllness #MedEd #MEAwareness

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 World M.E. Alliance:

"Be part of the World ME Day 2024 campaign film"

https://worldmealliance.org/2024/03/be-part-of-the-world-me-day-2024-campaign-film/

"As we approach World ME Day 2024, we invite you to be a part of a new short film that aims to shed light on the reality of Myalgic Encephalomyelitis (ME)"

Deadline for video submissions is April 1st.

@mecfs

#MEcfs #PwME #MyalgicEncephalomyelitis #GlobalVoiceForME #Advocacy #MEAwareness

tomkindlon, to cfs
@tomkindlon@disabled.social avatar

🧵
ABC News (Australia):
"How Dave Clark regained a meaningful life after developing "

https://www.abc.net.au/news/2023-12-08/dave-clark-on-living-with-chronic-fatigue-syndrome/103071294

2-minute video of Dave reading his poem plus a separate text piece by him

Dave who became ill with at 21 17 years ago, describes what it’s like to live with the condition, the impact on his life & sense of self worth, & how he has built a meaningful life, despite the condition.

@mecfs

1/

tomkindlon,
@tomkindlon@disabled.social avatar

2/

“Living with chronic fatigue syndrome (CFS) is like being erased. It rubs out what my brain and body can do, turning me into a reduced version of myself.”

“Having CFS is like being a dormant seed, waiting for just enough energy to come alive.”

@mecfs

Private
LittleSteps2BXtra,

"Australia's clinical guidelines for treating ME/CFS are also "20 years out of date", Professor Marshall-Gradisnik says.

While guidelines in the United States and Britain no longer recommend interventions such as graded exercise and cognitive behavioural therapy, Australia's guidelines do."
👀

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@LittleSteps2BXtra How terrible! 😠

I'm so angry that any patient with ME, anywhere in the world, is being told to try graded exercise when there's no evidence it helps and there is evidence that it could make a patient worse.

For anyone who is new to this topic here is an 8 page summary document - from the Science for ME forum - about the issues with the PACE trial:

https://www.s4me.info/docs/PaceBriefing3.pdf

kikkih, (edited ) to mecfs

ME/CFS explained for carers.
«ME/CFS is a complex and disabling disease that affects many systems of the body. These include, but are not limited to, the brain, muscles, digestive, immune and cardiac systems.» «It is not something that they did wrong or a psychological illness.»
https://www.emerge.org.au/me-cfs-explained-for-carers/

@mecfs

From: @tomkindlon
https://disabled.social/@tomkindlon@disabled.social/110889529519083158

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

Blog post from ME patient Anil van der Zee:

"M.E. Matters"

"My life is just one of many millions worldwide that are suffering. They’re suffering in silence.

You often can’t see it on the outside, especially not on those who have a milder form of the disease.

Those like me who are severe are hidden away from society. At home, often in darkened rooms. With earmuffs, earplugs, and shades."

https://anilvanderzee.com/m-e-matters/

@mecfs

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,

15/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by retooting this 7-minute @abrokenbattery
video, "What is ME? ( aka )".

https://www.youtube.com/watch?v=VKPdgz612nU

Day 15
@mecfs @cfs

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