Science, history of ideas, disability, ME/CFS, photography, film, boardgames, curiousity.
#pwME #MEcfs #HistMed #NEISvoid
| Location | Sweden |
| Bluesky | https://bsky.app/profile/elinz.bsky.social |
| https://twitter.com/ezchili |
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
Also, see this article on ME/CFS in Science: https://www.science.org/doi/10.1126/science.abo1261
Thanks for asking.
Some resources on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
ME/CFS criteria: https://me-pedia.org/wiki/Canadian_Consensus_Criteria
What is ME/CFS? Video by @brokenbattery: https://www.youtube.com/watch?v=VKPdgz612nU
Open Medicine Foundation: https://www.omf.ngo/what-is-mecfs/
Advances in Understanding the Pathophysiology of ME/CFS, by Anthony Komaroff: https://www.omf.ngo/wp-content/uploads/2019/07/jama_komaroff_2019_vp_190087.pdf
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.
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.
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.
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
All research studies including ME/CFS and LongCovid patients should identify how many in the LongCovid group fulfill criteria for ME/CFS. This is basics.
These two groups are overlapping circles. It's essential to know where they overlap.
@ahimsa_pdx
I don't know if it will always be like that. It's kinda new and still growing.
If you would be curious to try, here's an initiative to distribute invite codes to the chronic illness community: https://docs.google.com/forms/d/e/1FAIpQLSeWgCCEpr5p9b7I0RuvB9LmvQcC6rm1dx_CgCYBzU9VtTBj6A/viewform
From: https://twitter.com/julierehmeyer/status/1707923636487925949
I can now also be found here: https://bsky.app/profile/elinz.bsky.social
Many in the chronic illness community gather on Bluesky at the moment.
#Bluesky #pwME #ChronicIllness #Community @mecfs @chronicillness
