Discover and read the best of Twitter Threads about #DontLetMEDie
Most recents (5)
What I mean is that they saw me before. They saw me sick. They saw me moderate, mild, severe. They heard and witness the dozens of symptoms accumulating for years. They saw it. I didn't know what was happening to me. I checked SO MANY OF the mecfs symptoms for YEARS.
#meawareness
#meawareness
doctors even diagnose me orthostatomic hypotension, orthostatic intolerance, then pots. the raynauds, like a lot of these conditions. But they did nothing about it. "It will disappear" Guess what ? It got worse. i even had a test for an illness that causes red blood cells to not
be able to transport the oxygen through the body. like they all saw that something was wrong but it was "nothing"
Of course they kept blaming the fact that I was sick and getting worse on me. "I wasn't doing enough" while I was overworking and probably in crashes all the time.
Of course they kept blaming the fact that I was sick and getting worse on me. "I wasn't doing enough" while I was overworking and probably in crashes all the time.
A thread for #MEAwarenessHour.
The Chronic Collaboration has been working with @StripyLightCIC and @arisonsned on a guide for MPs to advocate on behalf of #SevereME patients. We're pleased to say that this will be out next Wednesday. BUT - we want everyone to be involved 1/
The Chronic Collaboration has been working with @StripyLightCIC and @arisonsned on a guide for MPs to advocate on behalf of #SevereME patients. We're pleased to say that this will be out next Wednesday. BUT - we want everyone to be involved 1/
2/ Next Wednesday during #MEAwarenessHour we'll have a online version of the guide that everyone can see. We want people to tweet their MPs, sharing the guide with them & telling them why it's so important. We have a new hashtag for this: #MPDoYourJob4ME. But that's not all
3/ We'll be providing the APPG on ME with a copy of the #SevereME advocacy guide for it to present to it's AGM next Tuesday, 21 March. So - next week's #MEAwarenessHour will be big. Please get involved as Alice, Sami, Louise & so many more need us.
But that's still not all.
But that's still not all.
Mijn mening over het besluit alle corona maatregelen weg te doen:
1. Super fijn dat vaccins zo goed werken en er nu stukken minder mensen overlijden!
2. overlijden is niet het ergste dat je kan gebeuren, severeME is de letterkijke hel
3. iedereen kan LC en dus ME krijgen
1. Super fijn dat vaccins zo goed werken en er nu stukken minder mensen overlijden!
2. overlijden is niet het ergste dat je kan gebeuren, severeME is de letterkijke hel
3. iedereen kan LC en dus ME krijgen
4. ME wil je niet krijgen, trust me
5. De aantallen die LC krijgen hangt af van het aantal besmettingen, ookal is de kans iets kleiner door vaccins, het risico is bizar groot
6. het is niet alleen persoonlijk leed, maar ook economie kan zoveel zieken niet aan
5. De aantallen die LC krijgen hangt af van het aantal besmettingen, ookal is de kans iets kleiner door vaccins, het risico is bizar groot
6. het is niet alleen persoonlijk leed, maar ook economie kan zoveel zieken niet aan
7. Niet alleen door velen met LC die niet kunnen werken wat personeelstekort veroorzaakt maar ook:
8. Als je ziek bent moet je alsnog thuis blijven, net als met griep, en als veel mensen dat tegelijk doen ligt het land alsnog stil
9. De mentaliteit dat alles over is is gevaarlijk
8. Als je ziek bent moet je alsnog thuis blijven, net als met griep, en als veel mensen dat tegelijk doen ligt het land alsnog stil
9. De mentaliteit dat alles over is is gevaarlijk
TW: death, severe illness
Here to support #DontLetMEDie! Let's talk about severe ME.
ME, usually #MECFS in the US, is a neurological disease initiated by infection ~80% of the time. Because it's neurological, it presents with symptoms in every system. 🧵
Here to support #DontLetMEDie! Let's talk about severe ME.
ME, usually #MECFS in the US, is a neurological disease initiated by infection ~80% of the time. Because it's neurological, it presents with symptoms in every system. 🧵
The quality of life in people with #MECFS is low on the median. 🧵#DontLetMEDie
Severe ME is extraordinarily impairing. Depicted are Merryn Crofts (L) and Whitney Dafoe (R) with severe ME.
Source is: me-pedia.org/wiki/Severe_an….
QOL & symptom survey instruments often aren't designed to capture debility this severe.
🧵#DontLetMEDie
Source is: me-pedia.org/wiki/Severe_an….
QOL & symptom survey instruments often aren't designed to capture debility this severe.
🧵#DontLetMEDie
#MECFS #DontLetMEDie
I think it was shortly before the beginning of summer 2022 when
Sandra sent me a photo with the text:
"No one sees me" or something like that. With the help of larger accounts I wanted to try to make this tweet "more popular".
Not a great success. But why?
I think it was shortly before the beginning of summer 2022 when
Sandra sent me a photo with the text:
"No one sees me" or something like that. With the help of larger accounts I wanted to try to make this tweet "more popular".
Not a great success. But why?
Sandra:
"35 years ill and not a single newspaper reports about a mom who gives everything to get well.
I do not get an answer. But people who are still very recently ill are already there. I don't like everything anymore. I've fought so much for all of us I can't #mecfs anymore"
"35 years ill and not a single newspaper reports about a mom who gives everything to get well.
I do not get an answer. But people who are still very recently ill are already there. I don't like everything anymore. I've fought so much for all of us I can't #mecfs anymore"
"I really want to see the Northern Lights.
I want to put my feet in the sea.
I still want so much.
#mecfs #NotRecovered
Ill for 35 years.
I'm so despondent."
I want to put my feet in the sea.
I still want so much.
#mecfs #NotRecovered
Ill for 35 years.
I'm so despondent."
