Purple_Shaman @purple_shaman@social.cleverlibre.org

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
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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).

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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

New from Moreau team in Canada:

"Circulating microRNA expression signatures accurately discriminate #myalgicencephalomyelitis from #fibromyalgia and comorbid conditions"

Free:
https://www.nature.com/articles/s41598-023-28955-9

"The results of this study demonstrate that ME/#CFS & #FM are two distinct illnesses"

#MEcfs #ChronicFatigueSyndrome #Fibro #FMS #PwME @mecfs

#Gratitude Day 22

#Today I’m grateful for resilience.

Resilience isn’t sexy. There are no great outcomes, and no prizes for resilience. Resilience doesn’t mean being okay all the time. I love that one definition of resilience is the ability of a substance or object to spring back into shape. Allowing yourself to fall apart and not cope is part of resilience too. Giving yourself that space and trusting that you will come out the other side. #mecfs

What are you grateful for today?

This from @SivaAnandaciva@twitter.com is worth repeating from this piece by @Ben_Spencer@twitter.com which looked in-depth at charging in Ireland and why it isn't the best of ideas: https://www.thetimes.co.uk/article/nhs-charge-fee-reform-patients-pay-gp-health-service-uk-zknv7l0ff

Sure, Twitter’s taken a 40-percent revenue hit — but it’s nothing that can’t be fixed with the sale of $8 blue checks to the Taliban, hm?

It was an absolute pleasure speaking with Prof Chris Ponting & Andy Devereux-Cooke about @DecodeMEstudy@twitter.com

Full episode wherever you get your podcasts, at http://www.LongCovidPodcast.com

or direct link: https://www.buzzsprout.com/1835170/11825155

#LongCovid #MECFS

Emeritus Professor Warren Talks gives a talk at the ANZMES 42nd Annual General Meeting on Saturday 19th November 2022 about his latest research into ME/CFS and #LongCovid

https://www.youtube.com/watch?v=weQ0kK0Fgrs

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

Hey everyone. Just wanted to eliminate the confusion and let you know that this is actually me. 😂 Hope you are having an awesome Thursday!