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I have severe #mecfs and I’m raising funds to get a power wheelchair. Anything helps, we have a long way to go
gofund.me/31bda5a6a
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@chronicsheepe
Hi. severe #MEcfs ♿️ | Ex-Film crew📽 | they/them |
unceded xʷməθkʷəy̓əm territory Katılım Haziran 2016
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@jasrichards2 @Naomi_D_Harvey @Lwardo4 You’re preaching to someone who has severe ME and long COVID.
Unfortunately, you might just have to make up a term if you feel those two don’t describe what you experience.
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@chronicsheepe @Naomi_D_Harvey @Lwardo4 autoimmune chronic fatigue.
‘Exercise intolerance’ is a very loaded and ableist term that’s not used with my conditions and, as I understand it, is seen as rather problematic in the treatment of long COVID & ME too, because graduated exercise is so harmful.
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This is incorrect
While a hallmark of ME,
PEM is not exclusive to ME
In medical circles, the conversation around PEM has expanded significantly —especially as we’ve seen it crop up in other chronic conditions, e.g. Lyme disease, Fibromyalgia, Gulf war illness, EDS, POTS and LC
Todd Davenport@sunsopeningband
People miss two important things when it comes to ME, which confuses the picture of Long Covid and other conditions: 1. PEM is best known and characterized as part of ME. It is incorrect to say PEM is inherently part of other diseases. 2. People can and do have multiple things.
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@Naomi_D_Harvey @jasrichards2 @Lwardo4 Okay, then use a different term, and don’t appropriate a term used for PEM.
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@chronicsheepe @jasrichards2 @Lwardo4 We need a term for the post exertion symptom worsening that occurs in other diseases and PESE is just sat there with the perfect name for it.
There’s no point having a third term for PEM/PENE.
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@Naomi_D_Harvey @jasrichards2 @Lwardo4 I don’t understand your point. PENE and PESE were made up at the same time when people were debating which one to pick. There’s no difference?
I have distinct memories of people tweeting about how they liked “PESE” over “PENE” (and vice versa) as alternatives for PEM.
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@chronicsheepe @jasrichards2 @Lwardo4 It’s just a term though, there’s no “ground truth” here for PESE. It’s never had a proper definition like PEM & PENE does.
It should never be used as a synonym for PEM/PENE imo. And when I’m able I will write a paper on this topic.
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@Naomi_D_Harvey @jasrichards2 @Lwardo4 It IS the same thing though. I was on twitter when people started talking to rename PEM to PESE/PENE. Bateman-Horne also says “PEM/PESE”.
There’s no studies differentiating them because they’re the same, and they started from discussions on social media apps.
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@chronicsheepe @jasrichards2 @Lwardo4 Except it shouldn’t be and it isn’t, not really, although some do use it as a synonym and say it is.
PESE is not the same as PEM, it’s a component of PEM/PENE. Conceptually it needs to be separated out and used for the other diseases
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@Naomi_D_Harvey @jasrichards2 @Lwardo4 Except PESE is just another word for PEM. They’re one and the same.
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@jasrichards2 @Lwardo4 Self and others advocate for using the term PESE (post exertion symptom exacerbation) for the exertion related issues seen in other diseases.
Unfortunately a lot of doctors who don’t know anything about ME have heard poor definitions of PEM & think “ah, that’s what it’s called’
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@Naomi_D_Harvey @Lwardo4 I get what you’re saying and understand the definition but there are autoimmune conditions like Rheumatoid Arthritis and Lupus in which Chronic Fatigue is a symptom and we experience what I would describe as a PEM like response to exertion. Is there a term that should be used
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R. retweetledi
I have severe #mecfs and I’m raising funds to get a power wheelchair. Anything helps, we have a long way to go
gofund.me/31bda5a6a
English
@twitchyspoonie @arixanxim admitting you have ME is admitting you have a disease with no cure and no approved treatments. Diabetes has treatments and those people who do get treated can still live very active lives. Also, there’s no social debate whether diabetes is real.
It’s denial, fear, and stigma.
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Others have pointed this out before, but I don't understand how if you get diabetes from covid, while that is a kind of long covid, it's uncontroversial to call it diabetes. But if you get ME from covid, it's somehow controversial to call it ME.
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@Gen__Grievance @sunsopeningband There’s a possibility that someone can have ME and experience PEM, but be very mild in the other symptoms. A lot of those people don’t get diagnosed until they’ve pushed themselves into a more severe category where those symptoms can’t be ignored anymore.
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@sunsopeningband So if you have PEM but do not qualify under the CCC is it or is it not ME?
Would that make ME something more than just PEM or would you say that in those cases PEM is mistaken for something else?
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Interestingly enough, the equivalence between ME and PEM is far from “demonstrably false.” There is no case definition of any other disease that requires PEM.
None. Absolutely none.
Rather, ME requires PEM by any contemporary case definition of the past 20 years.
The end.
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@deborahbrian @sunsopeningband @laurast51362949 PESE and PEM are the same thing. PESE and PENE are alternative names for PEM that were created to try to better describe the symptom.
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@sunsopeningband @laurast51362949 And PESE, of course…
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@liamsLCjourney I had food poisoning so bad that I couldn’t eat solid foods for almost a month. Those first few days felt like the PEM I get now
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It's funny how we all say that malaise feels like being "poisoned", but none of us have ever been poisoned.
(unless you 𝘩𝘢𝘷𝘦 been poisoned, in which case, reply and tell us what it felt like!)
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$921/$27,214 raised
Still have a long way to go! Please keep sharing! All visibility helps ❤️
I’m raising funds for a power wheelchair so I can leave my bed! I have Severe #MEcfs from long covid, and this would give me back some much needed independence
gofund.me/d1d1b129e
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R. retweetledi
@saffronandsky Garlic. I know not every pwMCAS can tolerate garlic, but it’s been a lifesaver for my palate
coco aminos is a close second
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For folks w/ MCAS, what low histamine umami ingredients you can tolerate? I know we are all very different, but as I'm able to tolerate more foods I find myself missing that flavor category, most sources of which are high in histamine or other problematic components.
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I have to raise $27k+ on my own because #BC doesn’t have any funding for power wheelchairs for people like me
Something is really wrong with our system. Doctors tell me to get out of bed but I can’t afford the device to do so
@TheTyee @CHEK_News @bcndp @COPEVancouver @CityNewsVAN
R.@chronicsheepe
I have severe #mecfs and I’m raising funds to get a power wheelchair. Anything helps, we have a long way to go gofund.me/31bda5a6a
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