diatoma.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

30 yrs have been wasted on a psychological approach to #MECFS that led to stigma, abuse, and serious harm. It was abandoned by NICE due to bad science. Wes Streeting & @ashleydaltonmp.bsky.social The Delivery Plan is an opportunity to undo the damage and research treatments #FundThePlan

submitted 3 days ago • 0 comments

One last crack at getting then to change their minds? @davetuller1.bsky.social rounds up a decent medical posse to take on Cochrane's failure to review their guidance of exercise therapy for people with #mecfs Trial by Error blog | 20 February 2025: virology.ws/2025/02/20/t... #exercisetherapy #GET

submitted 3 days ago • 2 comments

Sympathetic 8-minute video on popular YouTube channel, SciShow, already has over 100,000 views in less than 24 hours. "Exercise Actually Makes Chronic Fatigue Syndrome Worse" www.youtube.com/watch?v=wxSw... #MEcfs #CFS

submitted 3 days ago • 1 comment

A few days ago we heard the UK’s government delivery plan for ME will contain NO additional funding. How will this make a meaningful difference to #pwME? So @wesstreeting.bsky.social and @ashleydaltonmp.bsky.social , please listen our lived experiences, and #FundThePlan @thereforme.bsky.social

submitted 3 days ago • 0 comments

@scishow.bsky.social just gave #MEcfs some love, and it is an excellent video! If you watch 𝙖𝙣𝙮 video about ME & #LongCovid, watch this 8-min episode. It's not science-heavy, but rather a summary of where post-viral illness stands at present. youtu.be/wxSwYUennBA?...

submitted 3 days ago • 0 comments

SciShow: 'Exercise Actually Makes Chronic Fatigue Syndrome Worse' 'ME/CFS, or myalgic encephalomyelitis/chronic fatigue syndrome, is way more than being tired at the end of the day. And, contrary to situations like that, exercise is the last thing you'd want to do' www.youtube.com/watch?v=wxSw...

submitted 3 days ago • 2 comments

SciShow released a video about ME/CFS and the comments are filled with other people w ME talking about how devastating the illness is, and how grateful they are to see a large channel talking about it in a way that isn't dismissive, and I get it completely

submitted 2 days ago • 2 comments

Medicaid is the main source of funding for aging and disability care, including home and community-based care. Medicaid is critical to the well-being of many in our community. Check out this Protecting Medicaid Toolkit organized by energy levels. docs.google.com/document/d/1... #pwME #Medicaid

submitted 2 days ago • 2 comments

New piece on #MyalgicEncephalomyelitis from The Times of London. "The sickest lie in darkened rooms, sometimes unable to move, speak or even swallow. Those living with the most extreme forms of ME describe it as not a life but a bare existence." #pwME #LongCovid www.thetimes.com/comment/colu...

submitted 2 days ago • 1 comment

Betroffene von #MECFS haben mit der #LemonChallengeMECFS 🍋 eine Initiative ins Leben gerufen, die ins Bewusstsein rufen soll, was sonst oft gar nicht sichtbar ist. Dabei unterstütze ich gern. Denn solche Aktionen erinnern uns daran: Es geht nicht nur um Zahlen oder Diagnosen. Es geht um Menschen.

submitted 6 days ago • 92 comments

Kudos to those in Germany involved in the #LemonChallengeMECFS 🍋! Pretty fantastic to see the word spread there about ME and more and more people in power showing support for pwME!!! Keep up the awesome work! 👏👏👏 @katha1970.bsky.social

submitted 2 days ago • 2 comments

Updated my profile pic to get more people donating to my rent PayPal and medical GFM ✨ Rent is due next week, I need more donations to stay housed, please share if you can’t donate 🙏🏼 ❤️ Rent PayPal: www.paypal.com/paypalme/Sav... 💙 Medical care GFM: www.gofundme.com/f/save-nevra

submitted 3 days ago • 1 comment

Did anybody with #POTS and / or #MECFS try #Desmopressin? I could convince my doctors for a try, but i do not know if its better in the morning or evening to take. #PWme #HyperPOTS #neurogenicbladder #Polyneuropathy

submitted 3 days ago • 0 comments

Wow—terrific work by @scishow.bsky.social explaining why exercise can be harmful in ME/CFS! Even gets into the scientific scandal that’s misled doctors for years on this point. Wonderful thing to share w/anyone who’s newly ill, uninitiated family members, or even docs who might not be up to date!

submitted 3 days ago • 4 comments

Finally this is getting picked up by more mainstream channels, a great summary #SciShow thank you for the well researched and accurate, palatable video on #ME/CFS. Like, comment and share it gang, keep getting it out there! #MECFS #CFS #ME #ChronicIllness #ChronicFatigueSyndrome #YouTube

submitted 3 days ago • 1 comment

There's a wonderful letter to Cochrane about their outdated and harmful review of exercise as a treatment for ME/CFS, organised by @davidtuller1 and signed by a group of experts. virology.ws/2025/02/20/t...

submitted 3 days ago • 1 comment

So excited that @scishow.bsky.social covered #ME/CFS in a really well done video that pulled no punches about the PACE trial 🥲 www.youtube.com/watch?v=wxSw...

submitted 3 days ago • 0 comments

Die Premiere von CHRONISCH IGNORIERT war am 19.02.2025 – eine bewegende, informative Veranstaltung. Der Dokumentarfilm läuft am 25.02. um 22:35 Uhr auf Arte TV als Chronisch Krank - Chronisch Ignoriert und ist ab 24.02. online in der ARTE Mediathek. 💙 #MECFS

submitted 3 days ago • 0 comments

Some brilliant news! The massive You Tube channel SciShow has covered ME/CFS & Long Covid. They've also talked about the terrible PACE trial. #ChronicIllness #LongCovid #ME #CFS www.youtube.com/watch?v=wxSw...

submitted 3 days ago • 0 comments

A concise ME/CFS and exercise explainer: youtu.be/wxSwYUennBA?...

submitted 3 days ago • 0 comments

🎥 Today we’re launching our #FundThePlan campaign! With over a month until the delivery plan is finalised, ministers can still reconsider the resources behind it. We want to show them why it is important to #FundThePlan. Share a video on social media using our template ⬇️

submitted 3 days ago • 2 comments

#MECFS please share and get involved if you can :)

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@laylamoran.bsky.social A concise explainer about exercise and ME/CFS and Long Covid: youtu.be/wxSwYUennBA?...

submitted 3 days ago • 0 comments

All Pillow Meetings are open to anyone with ME/CFS or Long Covid. There’s no club, no clique no membership no obligation. No requirement to write, to speak or to get out of bed. We have several meetings every week. Come as often or as infrequently as you like. pillowwriters.wordpress.com

submitted 3 days ago • 0 comments

www.youtube.com/watch?v=wxSw... How to send this to my neurologist who keeps pushing PT for my post-Covid ME/CFS?

submitted 3 days ago • 0 comments

If you have ME/CFS, LongCovid, Fibromyalgia or a related chronic disease, I recommend signing up for the global OMF StudyMe registry. There, you can select what kinds of studies you would like to be contacted for. studypages.com/s/the-omf-st...

submitted 3 days ago • 0 comments

virology.ws/2025/02/15/t... Can we stop with the GET or exercise therapy for LC and ME/CFS? How many studies to debunk it are needed before the scientific community accepts it harms patients? Why the resistance to change?

submitted 3 days ago • 1 comment

Muchas enfermas cuando llegamos a saber ésto ya es tarde 😔 #EncefalimielitisMiálgica #EMsfc #MEcfs youtu.be/wxSwYUennBA?...

submitted 3 days ago • 0 comments

Dear #ME #LongCovid friends, here's a wonderful #JohnVsJonVsME @johnvsjonvsme.bsky.social dopamine boost by @mayalongcovid.bsky.social - Pedro Pascal as ME & LC infographics! (and with an excellent adaptation of the 'Dream Lover' lyrics) #GreatestMEdicalScandal #ValentinesDay #IACC #MedSky

submitted 2 days ago • 0 comments

Belated #JohnVsJonVsME #GreatestMEdicalScandal Valentine’s Day 💘 #ME #MECFS #LongCovid Research is my Love Language Love to the #IACC community *Best full screen & sound for ME themed lyrics 🎧🎶 Part 1: “Dream Lover” Pedro Pascal as ME & LongCovid Research infographics #MedSky

submitted 3 days ago • 2 comments

En 8 mn vidéo claire et accessible qui parle de l'#EM/SFC

submitted 3 days ago • 0 comments

I have been saying for YEARS that anytime I exercised or even did household chores I'd feel like I had the flu shortly after, and would sometimes be bedridden for a day or more. ..But my family and most able bodied folks would just tell me I was lazy, out of shape, and needed to do more Yoga 🙄

submitted 3 days ago • 6 comments

Now we gotta find out if Pedro Pascal follows @scishow.bsky.social @mayalongcovid.bsky.social 🙏🏻

submitted 3 days ago • 1 comment

Covid is the number 1 cause of MECFS right now, an incurable disease affecting millions of people where expending any amount of energy can leave u permanently bed bound or dead. Watch this video

submitted 3 days ago • 6 comments

Have you watched this excellent intro to #MyalgicEncephalomyelitis #MECFS #PEM by @scishow.bsky.social ? It's only 8 minutes long & jam-packed with important info (including helping folks with #LongCovid that matches mild #ME identify #PEM & prevent harm 🙏🏻) www.youtube.com/watch?v=wxSw...

submitted 3 days ago • 10 comments

Sci Show did such a good job on this episode, including covering the deeply problematic PACE trial. I’m so glad to see ME/CFS and PEM get some wider, accurate coverage. youtu.be/wxSwYUennBA?...

submitted 3 days ago • 0 comments

"REALLY wish I had seen this a decade ago" was my thought precisely! (A decade ago my #ME was mild.) Seeing comments below the video saying "Whoa- I hadn't heard about PEM and that sounds like me" (as well as notes on feeling validated) has made my day/week/month. Gracias @scishow.bsky.social ❤️

submitted 3 days ago • 0 comments

Excellent overview on ME/CFS.

submitted 3 days ago • 0 comments

SciShow has a nice episode about energy depleting illnesses such as #MyalgicEncephalomyelitis and #LongCovid in which they focus on energy saving, not pushing through to avoid PEM, and they bring criticism to the flawed Pace trial. They did a good job! youtu.be/wxSwYUennBA?...

submitted 3 days ago • 1 comment

Good to see a popular educational Youtube channel (SciShow) make a concise video on #MECFS and why exercise makes it worse (8 mins). Also includes a brief section on the PACE trial. youtu.be/wxSwYUennBA?...

submitted 3 days ago • 4 comments