ezchili

@ezchili@mstdn.social

Science, history of ideas, disability, ME/CFS, photography, film, boardgames, curiousity.

#pwME #MEcfs #ChronicIllness #HistMed #NEISvoid

Profile picture description: Photo of ez (me) outside in the sun, smiling, with sunglasses on.

Banner picture description: Close up photo of yellow and green chili fruits growing on a plant with lots of leaves. Extra info not in picture: the chili is called Hot Lemon.

This profile is from a federated server and may be incomplete. Browse more on the original instance.

ezchili, to mecfs

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

ezchili,

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

ezchili,

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

ezchili,

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

ezchili, to mecfs

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.

#MECFS #LongCovid @longcovid @mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Recovery Position Statement

This 2-page document seems to me to be a fair overview of the topic, though will likely be disappointing for people unaware of some of the research.

https://www.emerge.org.au/recovery-position-statement/

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps

ezchili,

@tomkindlon @mecfs

Do you know of any more estimates of recovery rates for ME/CFS? I understand that the often stated 5% is not particularly confident?

Private
ezchili,

@kikkih @Psychonaut @mecfs @longcovid

About half of Long Covid patients have ME/CFS. (A bunch of studies show around 50 %)

PEM is the main characteristic of ME/CFS and what helps tell it apart from other illnesses. (IOM 2015)

#MECFS #pwME #PostExertionalMalaise #PEM

ezchili, to mecfs

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

ezchili, to mecfs

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 @historyofmedicine

astro_jcm, to random
@astro_jcm@mastodon.online avatar

One day I will be able to write the word "exercise" correctly in one attempt.

ezchili,

@astro_jcm I feel seen!

ezchili, (edited ) to mecfs

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!

#MECFS #pwME #MedEd #MedMastodon @mecfs

tomkindlon, to cfs
@tomkindlon@disabled.social avatar

🧵

New research from Germany
"Longterm course of neuropsychological symptoms and ME/CFS after SARS-CoV-2-infection: a prospective registry study"

Free fulltext:
https://link.springer.com/article/10.1007/s00406-023-01661-3

visit 1: 31.3% fulfilled ME/#CFS criteria*

visit 2: 19.4% fulfilled #MECFS criteria*

*Canadian

#LongCovid #PwLC @longcovid @covid @covid19 #PostCovidSyndrome #postcovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @mecfs

1/

ezchili,

@tomkindlon @longcovid @covid @covid19 @mecfs

Everyone keeps missing this crucial exception in the criteria!

It's good that you point it out.

ezchili, to mecfs

I once asked a neurologist about the recurrent burning sensation under a part of my skin. He said: "There's no nerve there" and that was it.

I wanted to follow up with "the skin has no nerves?" But didn't because I didn't want to upset him before the EMG testing.

#pwME @mecfs #MedMastodon #MECFS #MedicalGaslighting #Neurology

ezchili,

We were probably already off to a rocky start because he knew I was diagnosed with ME/CFS. Many neurologists seem to dislike that. They turn down referrals.

And I had told him my muscle weakness could set in after only 200 metres. He didn't try to hide his disbelief.

#pwME @mecfs #MedMastodon #MECFS #Stigma #MedicalGaslighting #Neurology

csk, to random

I created an interesting new (free, web-based) puzzle app for mobile devices (works best on iPads, less-well-to-not-at-all on other devices). Want to try some challenging puzzles that blend spatial reasoning and manual dexterity? Just Slide to Unlock! https://slide.isohedral.ca/

ezchili,

@csk Love this! But I'm stuck on this one...

ezchili,

@csk @Ianagol @ColinTheMathmo Yes, I found the last level the most difficult. Good pick! And the third last the second most difficult. 😊

ezchili,

@ColinTheMathmo @csk Simplest way would be to just put a number on each level!

That way we can more easily reference the level we're talking about and compare how far we've gotten in the game. 😊

ezchili, to random

@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 ?

ezchili,

@jawarajabbi @LongCovidAdvoc

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 @ABrokenBattery: youtu.be/VKPdgz612nU

Open Medicine Foundation: 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

#MECFS @mecfs

ezchili,

@jawarajabbi @LongCovidAdvoc

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

#MECFS @mecfs

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