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
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.
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
From Putrino Lab:
"We've reopened recruitment for the ME/CFS arm of our work with Prof. Akiko Iwasaki (@VirusesImmunity)!
If you have been diagnosed with ME/CFS PRIOR TO 2020 and live within a 50-MILE RADIUS of the upper east side of Manhattan you may be eligible. If you are bed- or house-bound we will come to you."
Please contact [email protected] for more info.
You can't talk about Post-Exertional Malaise (PEM) without mentioning ME/CFS. The term PEM was created to describe the unique manifestation occurring in people with ME/CFS.
If you separate PEM from its history and origin, you perpetuate the stigma surrounding ME/CFS. We need visibility and spread of knowledge.
#MECFS #Stigma #pwME #MedMastodon #MedEd #HistMed #HistoryOfMedicine #Medicine #PEM #PostExertionalMalaise @mecfs @historyofmedicine
A great new book about ME/CFS! Well researched, concise and easy to understand. I highly recommend it.
A Physiotherapist's Guide to Understanding and Managing ME/CFS
More info: https://uk.jkp.com/products/a-physiotherapists-guide-to-understanding-and-managing-mecfs
If every health care professional I come in contact with would read this, my life would be so much easier!
ahimsa