Create accountLogin

Recent searches

No recent searches

Search options

Only available when logged in.
det.social is one of the many independent Mastodon servers you can use to participate in the fediverse.
Mastodon Server des Unterhaltungsfernsehen Ehrenfeld zum dezentralen Diskurs.

Administered by:

Server stats:

2K
active users

det.social: AboutProfiles directoryPrivacy policy

Mastodon: AboutGet the appKeyboard shortcutsView source codev4.3.2

#MEAwarenessDay

0 posts0 participants0 posts today
Public
Tom Kindlon

(From the bird site)

ME nieuws @mecvsnieuws

#MEawarenessday video: The ME you don't see

Behind closed doors in the dark, Margot, @StillViv, @DaschaEliza, Ilse, @AnilvanderZee , Lara talk about life with severe ME. @LouCorsius talks about Céline.

Watch full video here: youtu.be/DJGk-2G3yE4 (NL+ENG subs)

#millionsmissing @mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME

Continued thread
Public *
ahimsa

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:

docs.google.com/document/d/15j

5/n

@mecfs

We can immediately improve quality-of-care for people with ME by educating clinicians about how to diagnose and treat ME through continuing education courses. Learn more about #MEAction's Teach ME Treat Me campaign at millionsmissing.org
#MedEd#MedMastodon#TeachMETreatME
Continued thread
Public *
ahimsa

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:

millionsmissing.meaction.net/t

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

#MillionsMissingTreat MEDiagnosis and Management of ME/CFS A Concise Clinical Review in Mayo Clinic Proceedings with a one credit CME Access the Concise Clinical Review Direct Link to the CME Jump directly to the CME associated with the Concise Clinical Review Access the CME
#MedEd#MedMastodon#TeachMETreatME
Public
FlotteBiene86

Wir brauchen mehr Artikel, nicht nur zeitlich um den #MEAwarenessDay herum.
#LongHaulers #PostCovid

zeit.de/gesundheit/2024-05/me-

Viele wissen immer noch nicht, dass es auch sie noch treffen kann. Vielleicht nach der 4. oder der 7. Infektion. Und ihre Kinder ebenfalls.

Wer chronisch krank und behindert ist wird nur zusätzlich weiter behindert und diskriminiert, helfen wollen und können wenige.

ZEIT ONLINEME/CFS : Die Krankheit ist brutal. Das Leben bleibt zart und schrecklich schönHunderttausende Menschen leben mit der unheilbaren Krankheit ME/CFS. Unsere Autorin traf es vor zwei Jahren nach einer Coronainfektion. Über den Kampf, nicht zu kämpfen
Continued thread
Public
ahimsa

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

White pillowcase with a handwritten message: "Marjorie, January 1990. #MillionsMissing means: - Millions of patients missing from their lives - Millions of dollars missing from research - Millions of doctors & nurses missing ME/CFS education" Next to the text is a drawing of a colorful butterfly trapped in a cage.
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
#MillionsMissing#MEcfs#WorldMEDay
Public *
ahimsa

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! ❤️

#WorldMEDay#MEcfs#PwME
Public
ahimsa

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

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 ❤️

hashman.caI am very sickIn October 2022, I was diagnosed with ME/CFS. In February of last year, it got a lot worse.
#MEcfs#MEAwarenessDay#WorldMEDay
Public
Esceedee

Vandaag is het #MEAwarenessDay.

Ik zou heel graag heel veel willen posten over ME maar heb er de energie niet voor.
(Daar is een woord voor maar daar kan ik vanwege de brainfog niet opkomen)

Maar als jullie nou allerlei berichten met die hashtag reposten, dan kan ik gaan slapen.

Alvast bedankt.

Public
Erik

It's #MEAwarenessDay or #WorldMEDay, and I want to say that for all its many serious faults, I am grateful to the fedi for introducing me to many people with ME (known or suspected, diagnosed or having the diagnosis denied them).

They are some of the best people I know, and they're living with one of the worst conditions I know of. They knew millions would be joining them as soon as the pandemic started, and they're always the vanguard of how to be safe and how to spot systemic ableism anywhere

ExploreLive feeds
About