Purple_Shaman @purple_shaman@qoto.org

Using #Mastodon
and the #Fediverse is an act of rebellion in itself.

By being here,
you are contributing to grow an alternative system that is led by the people and for the people, not for profits.

By being here,
you are encouraging a solution to a deteriorating social climate that thrives on outrage and monetization of hate.

By being here,
you are participating to the development of a new system that can slowly build a better world.

Thank you for being here 💚

Seeing a lot of love for this

The Atlantic

What if your body forced you to stop?

People suffering from #longCOVID, ME/#CFS, & other energy-limiting chronic illnesses, experience #fatigue that is different from everyday tiredness—& they’re often treated not just with disbelief but with contempt. *Ed Yong* speaks with Hanna Rosin on why so many experience indifference to a debilitating condition

Podcast & transcript
https://shorturl.at/hxSTW
@longcovid @mecfs #mecfs
#spoonie

2/
New from France:

Consequences of sarcolemma fatigue on maximal muscle strength production in patients with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome

Free:
https://clinbiomech.com/article/S0268-0033(23)00186-9/fulltext

"post-exercise sarcolemma fatigue...could be the cause of muscle failure"

#MEcfs #CFS

@mecfs

From MEAction UK:

"Response to the Guardian article 11 July 2023"

"MEAction UK was shocked to read the article ‘ME/CFS guidance that discourages exercise is flawed, say researchers’ published on 11th July 2023. The article covers an attack on the 2021 NICE guideline for ME/CFS by a group of researchers who have focused on treating ME with their pet therapies."

Read more here: https://www.meaction.net/2023/07/11/meaction-uks-response-to-the-guardian-article-11-july-2023/

#MEcfs #PwME #MyalgicEncephalomyelitis

Just posted this on the bird site - what is the last straw people need to leave twitter completely? I found my limit. I'm leaving.

For me, paying nazi, misogynistic 'influencers' is too far. I've long been passive on Twitter, but used it to distribute content. I can't do it anymore. The values conflict is too much.

I'd love it if some academics took a stand with me. I'm going to delete my (50K+) follower account on the 13th of August. I'm staying for a month to do a count down and encourage others to #DeleteTwitter.

I don't have a recommendation of where is best to go. Anywhere is better than Twitter and its ocean of hate. Appreciate a boost to build a bit of momentum for this protest attempt

Well done to Dr Charles Shepherd of the ME Association for putting in perspective the new commentary by CBT and graded exercise therapy proponents, individuals who have lots of competing interests and aren't necessarily focused on what's best for patients.

From "‘Shortcomings' identified in chronic fatigue syndrome guidance":
https://www.irishnews.com/news/uknews/2023/07/11/news/_shortcomings_identified_in_chronic_fatigue_syndrome_guidance-3426398

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME @mecfs

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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?

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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