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Reposted by Mari Carmen
Reposted by Mari Carmen
Reposted by Mari Carmen
Congrats you have #MECFS!
Isn’t that reassuring?
It’s only a condition with one of the worst qualities of life, no FDA approved treatments and we didn’t learn about it in med school.
Oh and there’s a good chance you’ll lose your job 🫠
Isn’t that reassuring?
It’s only a condition with one of the worst qualities of life, no FDA approved treatments and we didn’t learn about it in med school.
Oh and there’s a good chance you’ll lose your job 🫠
Reposted by Mari Carmen
Healthcare practitioners have a duty to treat the patient, not test results.
If a patient still has symptoms, saying “great news, your test results are normal” is not that reassuring.
Without acknowledging your patient’s continued suffering it will come across as dismissive.
#MedSky
If a patient still has symptoms, saying “great news, your test results are normal” is not that reassuring.
Without acknowledging your patient’s continued suffering it will come across as dismissive.
#MedSky
Do you have any extremely niche, but serious, ethical stances?
Reposted by Mari Carmen
In which I reach out to @hankgreen.bsky.social via his favored medium, trying to keep it under 60s while inadvertently relying heavily on my hands to hold my head up jaja. (I am back in horizontal mode now 🌸). Have you talked to @openmedf.bsky.social @polybiorf.bsky.social, Hank? #ME #LongCovid
I really hoped I could avoid it from the visit yesterday but I miscalculated.
🤞🏻I can recover in time for the appt and do it all again 😂
I already had to cancel 2 in person appts this year because of PEM 🤦🏻♀️
🤞🏻I can recover in time for the appt and do it all again 😂
I already had to cancel 2 in person appts this year because of PEM 🤦🏻♀️
People really don’t know how shitty the quality of life is with #MECFS
Horrible at every stage. “Mild” is anything but with some criteria saying you have a 50% drop in activity.
And the floor keeps dropping out from there.
25% are severe.
I repeat: 1 in 22 Covid infections triggers ME.
Horrible at every stage. “Mild” is anything but with some criteria saying you have a 50% drop in activity.
And the floor keeps dropping out from there.
25% are severe.
I repeat: 1 in 22 Covid infections triggers ME.
I am the least severe of severe #MECFS. I’m housebound but I can still be out of bed for 30-60 minutes spread through the day. I can still socialize a bit.
I explained to my extended family that I know people who haven’t talked to anyone in years.
Some are tube-fed, 100% bedbound.
Their faces 😰
I explained to my extended family that I know people who haven’t talked to anyone in years.
Some are tube-fed, 100% bedbound.
Their faces 😰
Reposted by Mari Carmen
PZ
@itsmepz.bsky.social
· 5d
Reposted by Mari Carmen
Didier
@medidier.bsky.social
· 21h
I just donated, again. One week to go before Judicial Review deadline. Please support these brave families www.crowdjustice.com/case/justice...
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
www.crowdjustice.com
Reposted by Mari Carmen
Nidea🥳
@nyconene.bsky.social
· 21h
Reposted by Mari Carmen
Nidea🥳
@nyconene.bsky.social
· 21h
Reposted by Mari Carmen
People continue to call COVID advocates’ pleas for masking “unreasonable”.
Yet people who’ve already been disabled by COVID have no choice but to live with the “unreasonable” burdens of constant COVID safety.
My latest:
substack.com/home/post/p-...
Yet people who’ve already been disabled by COVID have no choice but to live with the “unreasonable” burdens of constant COVID safety.
My latest:
substack.com/home/post/p-...
Beyond all reason
Long COVID patients are constantly harangued about our requests for COVID safety. Yet what we're asking for is far less than what we're called on to do to survive.
substack.com
Reposted by Mari Carmen
Reposted by Mari Carmen
How can we get people to become conscious of the fact that
there is a disease that they don't know exists
that will absolutely destroy your life,
help is nonexistent and
you'll be screaming into an abyss for the rest of your torturous life if it takes you down
by a roll of the dice.
#MEcfs
there is a disease that they don't know exists
that will absolutely destroy your life,
help is nonexistent and
you'll be screaming into an abyss for the rest of your torturous life if it takes you down
by a roll of the dice.
#MEcfs
There’s also #MECFS
1 in 22 covid infections will go on to develop ME, a condition with one of the worst qualities of life.
Only 25% of us can work.
The severest are too sick to leave their house and/or bed.
The absolute worst are tube fed, unable to tolerate light, sound or touch.
1 in 22 covid infections will go on to develop ME, a condition with one of the worst qualities of life.
Only 25% of us can work.
The severest are too sick to leave their house and/or bed.
The absolute worst are tube fed, unable to tolerate light, sound or touch.
Reposted by Mari Carmen
