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sarah boothby @swastrosarah.bsky.social · 1d

So proud to be amongst a community so dignified and respectful despite being so badly wronged, badly represented and unjustly served. Strength in our numbers #pwME #LongCovidME. Thank you 🏴󠁧󠁢󠁷󠁬󠁳󠁿
@ashleydaltonmp.bsky.social we can help you. Please accept our offer of support.
Justice4ME.uk 🙏🏼🙏🏼

Justice4ME.uk

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baszkom.bsky.social @baszkom.bsky.social · 2d

🤡🤡🤡

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Foxdie @foxdie.bsky.social · 6d

Labour + Streeting launching review into "over diagnosis" of mental health/neurodiverse conditions.

Simon Wessely been given vice chair position for it.

Excited for Cass 3.0 🫠🫠🫠

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Stephanie @stephanieoffer.bsky.social · 5d

How many more lives is Simon Wessely going to wreck before he retires?!?! #pwME #MECFS

You'd think that someone who had got things so stunningly, utterly, cruelly wrong in his unfounded, unscientific beliefs about ME would be discredited.

Again he'll claim people have a "false illness" belief

Foxdie @foxdie.bsky.social · 6d

Labour + Streeting launching review into "over diagnosis" of mental health/neurodiverse conditions.

Simon Wessely been given vice chair position for it.

Excited for Cass 3.0 🫠🫠🫠

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ME/CFS Science @mecfsskeptic.bsky.social · 6d

3) Speakers include Alain Moreau, Rob Wüst, Todd Davenport, Akiko Iwasaki, Anne Maitland, David Putrino, Michael VanElzakker, and Maya Dusenbery (Author of the book “Doing Harm).

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ME/CFS Science @mecfsskeptic.bsky.social · 6d

1) The Canadian ME/CFS research network ICanCME is organizing a free and online conference from 4 to 6 November.

The main presentations take place at:

1 pm - 5 pm Eastern Time
6 pm - 10 pm London Time
7 pm - 11 pm Brussels Time

#ICanCME2025

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birdsong4db.bsky.social @birdsong4db.bsky.social · 6d

It’s #MEawarenesshour. I’m tweeting in the hope that if more people are aware of M.E. and the way it devastates lives, more effort and funding will be allocated to investigating and searching for answers. We need an agreed, objective diagnostic test for detailed clinical trials.

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 7d

Dr Brayden Yellman spent years in outpatient rheumatology & acknowledges that infection-associated chronic conditions (IACCs), POTS, dysautonomia & ME/CFS mimic established rheumatic diseases & need thought about what it will take to better support such patients
tinyurl.com/5yrs7wz5

Why Rheumatology Must Prepare for Infection-Associated Chronic Conditions

When The Lancet Rheumatology published Dr. Brittany Adler’s essay, Expanding the Rheumatology Lens: Should We Embrace POTS and Post-Infectious Syndromes?, it captured a reality many in the field have…

tinyurl.com

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 7d

David Tuller has written once more to Cochrane’s CEO feeling that an article by the CFS exercise review’s lead author presented "a solid case for the need for an update–although that was clearly not her intention."
tinyurl.com/efbsshhc

Trial By Error: My Letter to Cochrane's Chief Executive Officer | Virology Blog

By David Tuller, DrPH The other day, I posted yet another blog about Cochrane's deeply flawed 2019 review of exercise therapy for what it called chroni ...

tinyurl.com

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ME Foggy Dog @mefoggydog.bsky.social · 8d

We are thrilled that #BedForSevereME is coming soon (29th Oct!), but we need YOU! Help us raise funds for @SmileForMEUK and Cure ME/ @mecfsbiobank . Share, donate, spread the word. Let’s make this huge! 💙 #pwME #SevereME #PJsAndProtocol

Whole video - youtube.com/live/L-YCeTq...

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Chise @sailorrooscout.bsky.social · 10d

Well now, would you look at that?

A massive, 26-YEAR-LONG study of MORE THAN 2.4 MILLION people in Sweden found found NO EVIDENCE to support a causal link between acetaminophen (the API in Tylenol) use during pregnancy and increased risk of autism, ADHD, OR intellectual disability in children.

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Chise @sailorrooscout.bsky.social · 8d

GOOD NEWS! Researchers have unveiled a promising new vaccine that generates a powerful immune response against HIV and other viruses including SARS-CoV-2 and influenza with just ONE dose. By combining immune-boosting adjuvants, the vaccine encourages the body to generate more antibody variations.

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Sammie McFarland @sammiemc.bsky.social · 12d

Never in the life plan, but I'm proud to have this opportunity to give oral evidence at the inquiry on behalf of the
@longcovidkids.bsky.social community.

I will do my best, for my daughter and all children, in the hope that the rights of children will be prioritised, ASAP & in the future.

Long Covid Kids @longcovidkids.bsky.social · 12d

We are pleased to confirm that @sammiemc.bsky.social Founder & CEO, LCK, will give evidence to the UK COVID Inquiry on the morning of Wednesday 1st October.

covid19.public-inquiry.uk/hearings/chi...

Children and Young People (Module 8) - Public Hearings - UK Covid-19 Inquiry

The independent public inquiry to examine the Covid-19 pandemic in the UK

covid19.public-inquiry.uk

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sarah boothby @swastrosarah.bsky.social · 8d

🙏

Chris Ponting @cgatist.bsky.social · 8d

Hi Sarah. Our 2 #MEcfs prevalence estimates of ~400k in the UK are from openresearch.nihr.ac.uk/articles/5-39 & bmcpublichealth.biomedcentral.com/articles/10..... We'd love to do more on this in the future, analysing GP data via CPRD (www.cprd.com) & GPDPR.

NIHR Open Research Article: Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank.

Read the latest article version by Gemma L. Samms, Chris P. Ponting, at NIHR Open Research.

openresearch.nihr.ac.uk

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Fiona C @drfionac.bsky.social · 9d

This week’s video from Jarred Younger #MECFS

074 - New study: Pyridostigmine may help ME/CFS muscle weakness

YouTube video by Jarred Younger, PhD

youtube.com

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baszkom.bsky.social @baszkom.bsky.social · 8d

If you have PEM there's no evidence to suggest that tolerance can even be built - in fact there's a ton of anecdotal evidence that increased activity and exercise worsens MECFS and often permanently.

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The Real McCoy @rippermd41.bsky.social · 9d

How in the year 2025 are researchers still using the Fukuda criteria? 🤦🏻‍♀️

Whenever you see a new #MECFS study always check how they select ME patients.

Fukuda’s giant flaw 👇

ME/CFS Science @mecfsskeptic.bsky.social · 9d

5) The sample size was also quite small (only 25 ME/CFS) patients and the outdated Fukuda-criteria were used which do not require the hallmark feature of post-exertional malaise (PEM).

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The Tennessee Holler @thetnholler.bsky.social · 9d

👀 ⛳️ 🏌️‍♂️ 🏆 #RyderCup

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Lewis Baston @lewisbaston.bsky.social · 10d

The BBC spinning for Farage. Laundering extreme policies. I’m done with making excuses for them.

Tom Hunter @onelifestand87.bsky.social · 10d

If they don’t pull someone in & fire them by the end of today over this then they might as well give up now. Mass deportation plans are how Reform describe them so this is clearly a sweaty failure panicking at his people finding out what his special friends are actually like

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Mischa Watson @mischawatson.bsky.social · 10d

Defund the BBC

Tom Hunter @onelifestand87.bsky.social · 10d

If they don’t pull someone in & fire them by the end of today over this then they might as well give up now. Mass deportation plans are how Reform describe them so this is clearly a sweaty failure panicking at his people finding out what his special friends are actually like

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Tom Hunter @onelifestand87.bsky.social · 10d

If they don’t pull someone in & fire them by the end of today over this then they might as well give up now. Mass deportation plans are how Reform describe them so this is clearly a sweaty failure panicking at his people finding out what his special friends are actually like

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Sam Freedman @samfr.bsky.social · 10d

"We have a debt crisis so I've joined the party that was in power for 14 years and under whom debt massively grew."

"Commentator of the Year"

JWexTheSpa @jwsidders.bsky.social · 10d

No-one is surprised, Matthew. Absolutely no-one.

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PZ @itsmepz.bsky.social · 9d

It's 2025, 6 years into a pandemic that has caused an epidemic of new cases of #MECFS.

There have never been so many advocacy orgs and quality resources available to inform on MECFS.

And still, media pieces that mention #MyalgicEncephalomyelitis are misinformed and incorrect.

#pwME

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valebodi.bsky.social @valebodi.bsky.social · 9d

Press Release:
#ME/CFS and Long Covid: Switzerland becomes the first European country to adopt a National Strategy to help those affected
Bern, 18th September 2025

The Council of States has approved a motion calling for a national strategy to improve the health situation of people with Myalgic

www.europeanmealliance.org

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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 10d

💯! The ME & LC story is never just a personal tragedy or triumph, it’s a massive scandal & systemic injustice that needs urgent action

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