Brian Shuell @Bshuell@qoto.org

Something that is poorly appreciated, I think, is that people with mild ME/CFS can look well and lead seemingly active lives, but the reality is that most things are much, much harder. E.g., the walk to the local shops, the sprint to catch the train, the stair climbing when the lifts are not working. All these can be done, but they are difficult, painful, may take longer, and can have immediate and/or lasting consequences.
#MECFS #pwME

#MastodonNews Nov. 21, 2022 :

Eugen getting some great mainstream media coverage today.

Time: Thousands Have Joined Mastodon Since Twitter Changed Hands. Its Founder Has a Vision for Democratizing Social Media >>> https://time.com/6229230/mastodon-eugen-rochko-interview/

...the idea that there is a better way to do social media...

...the experience that people want is that of a much safer space than something like Twitter.

#twittermigration #mastodonmigration #news
#MastodonMigrationNews >>> https://medium.com/@mastodonmigration/sharing-advice-and-assisting-with-the-great-mastodon-migration-53c1a286b805#cfd1

As of 10 November 2022, it is estimated that 94% of Americans have had Covid at least once, much of those infections in the past year. Ranking of states w/ most vulnerability d/t lack of vaccines/ boosters https://www.medrxiv.org/content/10.1101/2022.11.19.22282525v1 @HarvardChanSPH@twitter.com

Scientists are exploring how inflammation and sleep are connected.
“But this wasn’t a restful sleep. Infected people had difficulty falling asleep, woke up more, and had a more restless sleep especially when they were most symptomatic.”
“Up to six months after an infection, 41 percent reported sleep disturbances; an additional 7 percent reported disturbances that were severe.”

https://www.nationalgeographic.com/magazine/article/covid-19-can-ruin-your-sleep-in-many-different-waysheres-why

The problem is when you have a marginally better day or days, the temptation to do more is just unavoidable. You just want to feel normal, to be able to do normal things, desperate to just have a normal life. #pwME #MECFS #LongCovid

"Long Covid: What's changed, and what we know now"

Includes a mention of our 56k-strong, compassionately-moderated Long Covid Support group on Facebook, link in bio.
https://www.bbc.co.uk/news/uk-england-london-63546138

excellent article from the perspective of a reporter who fell ill with Long Covid. and it explicitly connects it to ME/CFS. there's an accompanying video too.

#mecfs #LongCovid

https://news.sky.com/story/how-long-covid-ruined-my-life-from-crushing-fatigue-to-brain-fog-12744444

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe condition characterized by post-exertional #Neuroimmune exhaustion (PENE) accompanied by #Neurological, #Immunological, #Gastrointestinal (GI), & #Mitochondrial disturbances […]i affecting 17 million to 24 million people (2). ME/CFS is heterogeneous not only in Sx presentation but also illness trajectories, which can be worsening, plateauing, improving, or relapsing-remitting”
https://www.science.org/doi/10.1126/science.abo1261
#MECFS #ChronicIllness

The audiobook version of Ryan Prior's The Long Haul is now available for pre-order, with delivery on Nov. 29. Ryan himself is doing the narration, and if you've heard him on podcasts you know he made a great choice. #LongCovid #mecfs

https://libro.fm/audiobooks/9798765079140-the-long-haul

“You don’t look disabled”

Highly recommend all #DisabledSocial and new Mastodon users read the following tips on how to stay safe in the #Fediverse

https://fedi.tips/staying-safe-on-mastodon/

Given that we are rapidly trying to build community here…

Can I ask you to do two key things:

1) Reshare other people’s posts - so your timeline is rich with other people’s posts for anyone browsing your content to discover.

2) Follow, follow, follow. That goes for following those posting good stuff - and also following those that follow you (as much as practically possible/sensible).

If you do these things, you’ll help us all network up at fast pace - and we all grow our voices & reach. ✌️

@mikegalsworthy Yes definitely, and well done for putting in so much work on this.

People new to this might not realise that likes/favourites work like a "thank you" but do nothing to make the post more visible. There is no algorithm. Use the button that looks like retweet, which is called either "boost" or "reblog" depending on which app you're using.

Full title is "The Long Haul: Solving the Puzzle of the Pandemic's Long Haulers and How They Are Changing Healthcare Forever" by Ryan Prior