Purple_Shaman @purple_shaman@qoto.org

3/

Fig. 3. Unifying bio-pathological model for post-COVID-19 syndromes and ME/CFS, and implications of chronic inflammation for plasmalogens levels.

From:
https://www.sciencedirect.com/science/article/pii/S0361923023001272

#MEcfs #CFS #MyalgicE #PwME #CFSME #LongCovid #Covidlonghaulers #PwLC #PostCovidSyndrome #postcovid

@longcovid @mecfs

"Recommended ME/CFS resources for medical educators" from @MECFSMedEd

https://mecfsmeded.files.wordpress.com/2023/04/mecfs-learning-resources.pdf

A collection of papers, articles and audiovisual material.

#MedEd #MedicalEducation #MedMastodon #MedicalStudents #MLA #pwME #MyalgicEncephalomyelitis @mecfs

We've written to the Medical Schools Council urging them to lead the development of excellent ME/CFS training for undergrad med students across the UK, and to openly share their plans with patient community. #MedEd #MedicalEducation #MedMastodon #MedicalStudents #MLA #pwME #MyalgicEncephalomyelitis #longCovid

https://mecfs-med-ed.org/2023/07/01/an-open-letter-to-the-medical-schools-council/

Twitter: I follow news and political giants, but all I see are bad people and arguments
Bluesky: I follow 10% of my old friends who were able to get out of twitter in time and sometimes it works
Threads: I follow my friends but I can’t see them through the algorithm of businesses
Mastodon: oh look a beekeeper in the Netherlands

8/

“I think #DecodeME is a fantastic example of patients and scientists collaborating to enable biomedical research into ME happen at scale, I am very hopeful that it will generate some promising results that point towards which pathways may be involved in this disease.​“

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme

Hey #spoonies I’ve got a diagnosis of #CFS aka #MyalgicEncephalomyelitis and was recently prescribed #naltrexone for off-label, micro-dose use in treating chronic pain. Working my way up to a dose of <10% of regular use, starting at 1 mL in solution. Just moved up to 1.5 after taking an extra week on the initial dose b/c of sleep disruption, and now I’ve got that plus all-over body aches, headache, and sore throat. Anyone else willing to share experiences?

2/

May is Myalgic Encephalomyelitis (ME) Awareness Month.
You can help by sharing and/or liking this video. It is 3 minutes 5 seconds long.
https://www.youtube.com/watch?v=TGIo1v7KVJQ
---
This film will give you an introduction to PEM (Post Exertional Malaise).
Once you've understood what PEM is about, you'll know a lot more about the debilitating chronic disease ME (Myalgic Encephalomyelitis).

---
Day #2
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MEeps #CFSME @mecfs @cfs

Trial by Error by David Tuller: Why Are Exercise Studies for #LongCovid Still Failing to Address post-exertional malaise [PEM] Adequately?

Tuller writes about a confusion among some researchers concerning what PEM is. When it comes to exercise studies, he writes: No "exercise reporting template" for long Covid is acceptable if it fails to include a recommendation of rigorous pre-screening for PEM/PESE.

https://bit.ly/3m22EcE
@longcovid #mecfs #cfs #PostCovid #PostCovid19 #pwme #pwlc

If there is one thing I'd like doctors all over the world to learn about ME/CFS (and some percentage of Long Covid cases) it's that exercise can cause harm.

Quote from article:

"Although it seems counter-intuitive that exercise … can cause harm, researchers have confirmed some of the physical effects of PEM through controlled studies."

#MEcfs #LongCovid #Research #Exercise #MedEd #MedMastodon

#LongCovid symptom management

"Advocates say a trial of exercise as a treatment for long COVID, proposed by the US National Institutes of Health (NIH), could harm participants. A large proportion of people with long COVID, which affects up to 23 million people in the United States, experience post-exertional malaise — a worsening of symptoms such as fatigue, difficulty regulating body temperature and cognitive dysfunction — after even light exercise."

https://nature.us17.list-manage.com/track/click?u=2c6057c528fdc6f73fa196d9d&id=cd09076b14&e=3f1ca61d7e

#NewZealand (Aotearoa):

Post-Viral Research Aotearoa

Founded in 2022. Lead researcher immunologist @DrAnnaNZ

Crowd-Funded Research into #LongCovid, ME/#CFS & Other Post-Viral Illnesses

Hosted at Univ of Auckland

https://www.pvra.nz

Best of luck 👍
@mecfs @cfs @longcovid

Happy St Patrick's Day! 💚 ☘️

The Emerald Isle as seen from the International Space Station:

#StPatricksDay #Ireland #ISS

photo courtesy NASA

“Trial By Error: GET/CBT Ideologues Revive 1991 Oxford Criteria as Core Definition for #LongCovid Research” (12 March 2023) by Dr David Tuller

https://www.virology.ws/2023/03/12/

“When it comes to “post-infective fatigue syndrome,” the GET/CBT ideologues already had their big chance to prove their case. It was called the PACE trial, and it bombed. Enough already.”

@longcovid @mecfs @cfs #myalgicencephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwLC #PwME #CFSME

"All right, I've gotten off my bicycle. Now where's the old person I'm allowed to beat up?"

Why returning to work (or any activity) post Long Covid needs to be slow and careful. https://www.ft.com/content/fb77b3ef-0ad6-4bc6-a44b-fd6e0bdfe846?shareType=nongift