as her advocates.
As a reg SW, I have emailed to share PFD report, NHS Devon clinical guidance, and newly published NHS e-Learning module 3: a lot to digest for any busy hospital.
As yet no invitation to join Zoom or MSTeams meeting.
#pwME, please post support to Savannah. She is afraid for her life

Trump Has No (Legal) Power to Mess With the Election But that won’t stop him from finding ways to make chaos.

The risk of Trump’s attacks on mail-in ballots is less that he will succeed in muzzling the franchise and more that the president will—as he did in 2020—kick up enough doubt that many Americans no longer trust election results, @qjurecic.bsky.social writes:

Clip from The Guardian’s Science Weekly podcast: MIT researcher Beth Pollack explains #MECFS — severe fatigue not relieved by rest, with post-exertional malaise as the hallmark. She says up to 61% are bedbound some days and severe #MECFS has been compared to late-stage AIDS.

Clip from The Guardian’s Science Weekly podcast: @nickyproctor.bsky.social describes how doctors dismissed her #MECFS as psychological, before she crashed completely and became mostly bedbound, unable even to hold a conversation.

YouTube’s Sneaky AI ‘Experiment’ The video platform is quietly using AI to “improve clarity” in uploaded content. Why?

YouTube is using AI to tweak videos on its platform—without creators' knowledge. Alex Reisner reports on the concerning experiment:

This is absolutely about racism.

White women everywhere this is a call for you to stand up to white men now. We have been too silent for too long with too much fear. We are powerful. We have a voice.

Time to use it.

We did suspect, but this is beyond the pale. Apparently when large, US- centered datasets were inaccessible, their content was altered. 🧪
www.psypost.org/secret-chang...

Graphic for Action for ME’s Young People’s Counselling Service. Text on left side is a quote about how helpful the counselling was and stresses how Action for ME’s counsellors can help. Arrow points to text ‘Visit our website’ in bottom left with graphic of two people sat talking in bottom right.

We know that living with ME can be hard, especially when you’re young. The lack of understanding of the condition can make you feel isolated and frustrated.

We’re here to help 🧡

Our free Young People’s Counselling Service is available for children aged 11-18 with suspected or diagnosed ME.

“It’ll push disabled people into poverty”: Labour’s controversial welfare bill – podcast Guardian columnist Frances Ryan on the reality of being disabled in the UK and the impact of the government’s proposed cuts

I’m on @todayinfocus.bsky.social podcast talking about my new book, Who Wants Normal?, the “million inequalities” still facing disabled people in the U.K. and why Labour’s cuts mean a positive narrative around disability is more important than ever.

Listen here: www.theguardian.com/p/x2t9a6?CMP...

fwiw and I know it’s not much I am a Jew who lives in New York City and while I am neither afraid of Zohran Mamdani nor his views on Israel and Palestine, I’m actually scared as hell about the horrific wave of racism, Islamophobia, and xenophobia that has been unleashed since his primary win

RFK Jr. says U.S. will stop funding global vaccine alliance Gavi Gavi works to expand access to vaccines for children in some of the world’s poorest countries. Health experts say the move could have deadly consequences.

Let’s be absolutely clear. This decision, based on fringe conspiracy theories, will kill children.
www.washingtonpost.com/health/2025/...

Homocysteine is the same for similar reasons.

Louder for the people in the back: "It has been a public health failure that the public does not realize how much organ damage #COVID infection can cause to things that aren’t your lungs (or throat or nose or taste buds)."

The image below is based on data collected from 80,071 kids and teens:

Medical Research Funding — Unbreaking How the administration is breaking the government, and what that means for all of us.

I urge everyone to read Unbreaking’s new page on everything the govt is doing to destroy & diminish medical research funding.

It’s the best thing I’ve read on this topic: @lizneeley.bsky.social & co have such done an incredible job.

unbreaking.org/issues/medic...

The zine is free to download and print on our website btw :) thesicktimes.org/2024/12/02/s...

Science for ME Fact Sheets The Science for ME committee and members are running a project to develop fact sheets about aspects of ME/CFS. These are being developed in...

One highlight from this week's news - the Science for ME forum has published its first factsheet, Introduction to ME/CFS:

www.s4me.info/threads/scie...

PDF version:

s4me.info/docs/WhatIsM...

#MEcfs #MyalgicEncephalomyelitis #PwME

Science for ME Fact Sheets The Science for ME committee and members are running a project to develop fact sheets about aspects of ME/CFS. These are being developed in...

The Science for ME forum has published a fact sheet on PEM, post-exertional malaise.

This fact sheet may be copied and used freely by individuals and organizations.

Forum version:

www.s4me.info/threads/scie...

PDF version:

www.s4me.info/docs/PEM_Fac...

#MEcfs #PwME

News in Brief - May 2025 This thread has a Science for ME 'News in Brief' post for each week in May 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman....

Our latest News in Brief post has headlines and links to further reading for #MECFS, #LongCovid, and related news, advocacy and research for the week of May 5 - 11.

Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research

www.s4me.info/threads/news...

Audience of 250+ at a conference venue facing a stage and three large screens

Conference booklet with the title 'ME/CFS AND LONG COVID - Digging Deeper'

Excited to be here in Stavanger, Norway, to speak at @meforeningen.bsky.social conference on ME/CFS and Long Covid

Fascinating programme planned, lots of interesting presenters

#MECFS #LongCovid #pwME

Family links . Many families have multiple members with ME/CFS, wider than immediate relatives too.

Want to use UK Biobank data to study ME/CFS? Can't decide which of the 5,354 UKB participants with evidence of ME/CFS to choose as cases? In this preprint, we consider what case/control definitions to apply. openresearch.nihr.ac.uk/articles/5-3... #pwME #mecfs

85/100 samples in the freezer! We now need to round out our control cohort. If you know anyone who is apparently healthy who might be interested in giving a sample to the project (with $20 reimbursement of time and expenses) please refer them to D.Missailidis@latrobe.edu.au

Putting the Arctic Ocean closer to the center, this brings the Greenland Canada gambit into focus. It is a grab for power, money, water, and resources, also giving the US complete control over the Northwest Passage. Fentanyl and the border are a smokescreen for a much bigger project: theft.

Photo of me sitting in my wheelchair on a brick walkway & holding a sign that says: 5 years of Long Covid Half a decade of neglect Where’s the action? 1 in 22 COVID infections leads to Myalgic Encephalomyelitis Lifelong Life-destroying

5 years. The only thing more traumatic than losing your life to a pandemic is being judged, mocked, & abandoned for it. If I look a little dead behind the eyes, that’s because I am 😵‍💫

#LongCovidAwarenessDay
#5YearsLongCovid #HalfADecadeOfNeglect
#LongCovidAwarenessDay2025

🚀 Launched on #LongCovidAwarenessDay for the community.

💥1000 signatures on day one.

Can you help us get more today?

you.38degrees.org.uk/petitions/in...

#LCandME
#FundOurFuture
#FundThePlan

I Don't Know Anyone With Long Covid Yes. You do. This Long Covid Awareness Day I want to talk about the reasons why many people don't realize they have Long Covid, as well as why others choose to hide their diagnosis.

This Long Covid Awareness Day, let's look at why people believe they don't know anyone with Long Covid.

We are in the middle of a mass disabling event that most people refuse to acknowledge.

When we face the truth & stop denying reality, we can save lives:

prillytee on Instagram says: Today, after a rally to save our healthcare featuring Bernie Sanders, Nancy Pelosi and other democratic and grassroots leaders, a group of us led by @womensmarch and @popdemoc took over the atrium of the Hart Senate building to stand up to Republicans slashing Medicare and Medicaid this week. 45 of us, all nonviolent protesters simply chanting and dropping banners, were arrested and ziptied behind our backs for three hours. Many were retired moms and grandmas from different parts of the country, from North Carolina to New Mexico. Almost all were women, because we are the caregivers who see firsthand what happens to families when healthcare is taken away.

Chronically ill folk arrested for peaceful protest to slashing Medicaid.

Link leads to vid of arrest. Police say, "back up. Back up!" She replies, "we have a right to be here." Another officer can be heard saying, "arrest 'em" and then the camera tilts.

www.instagram.com/reel/DHHkSiO...

Todd Davenport and I were on Cochrane's author team for a full update of their #MECFS exercise review. We wrote this open letter to them, critical of their decision to disband the effort, called for withdrawal of current review
@sunsopeningband.bsky.social (1/2)

drive.google.com/file/d/12__3...

@iandunt.bsky.social