#lcme — Public Fediverse posts

We shouldn't deny those who fulfil ME/CFS criteria a diagnosis of ME/CFS.

Denying that ME/CFS can be triggered by SARS-CoV-2 is counterproductive for the patient, for research, for health care knowledge, and for society.

#MECFS #pwME #LCME #LongCovid #svmed @longcovid @mecfs

ME triggered by anything after 2020 will probably fulfil LC criteria because it's difficult to rule out Covid.

If we stop diagnosing ME in people who might have had Covid-19, then ME will cease to exist officially.

If we deny ME/CFS, we lose a crucial tool with connection to history and previous science.

#MECFS #LCME #HistMed @longcovid @mecfs @historyofmedicine

People can have Long Covid and POTS, MCAS, diabetes, MS, etc. They can also have Long Covid and ME/CFS.

Not identifying subgroups within LC dilutes research studies.

Not identifying and counting ME/CFS perpetuates stigma. It hurts science and patients.

#MECFS #LongCovid #pwME #LCME

Long Covid criteria points to a very broad group of illnesses and pathology. ME after covid (LCME) will be a more defined subgroup within the LC group. It will also be a more defined subgroup within the ME group.

It's not a matter of either/or. It's a matter of both, and more!

#MECFS #LCME #pwME #svmed #Science #LongCovid #PostCovid #MedMastodon

It's crazy how the things that would be considered relaxing or a break for normal healthy people e.g. going to a coffee shop or out for lunch, are the main event for people with #Myalgic or #LCME. You have to build up for days to go and then rest and recover for days after.

👥👋🐘
Connecting the #LongCovid #MECFS community
🔹 Use hashtags #LongCovid #FBLC in bio & search
🔹 Write an #Introduction with that # & #LongCovid
🔹 Follow others - this creates your algorithm (not 🐦)
🔹Will Boost every Toot #LongCovid #MECFS to increase coverage
🔹 Here's a beginning list (1) of fab #LCME tooters
@Ody
@Ales_frost
@ahimsa_pdx
@cv_cev
@ClaireMyfanwy
@LaRougeAbeille
@Fascinatorfun
@ErinSandersNP
@maryGR67
@bcdelaney1
@ScribblerPen
@nataliahodgins
@amyboylanwrites

@LongCovidAdvoc

I believe #pwLC #pwME and #LongCovid are good hashtags. No need to complicate it.

And, as you say, since #FBLC was popular on the other site, that could prove useful too. Since people might be searching for that specifically.

That said, I'm a #pwME and not Long Covid ME. But I followed people who are, and I think I might have seen a specific hashtag for that group too? Maybe #LCME ?