Katy B

Clip 3 BBC Politics North:

Luke Akehurst MP says it’s “shocking” that #LongCovid services are being closed when ~2 million people live with the condition and about half consider themselves disabled. Covid is “not yesterday’s problem”, it is still causing events to be cancelled.

YouTube video by Broken Battery BBC Radio Sheffield | Fran Haddock on Long Covid & ME/CFS

Clip from BBC Radio Sheffield :

@franhaddock.bsky.social calls in to speak to Paulette Edwards about #LongCovid, #MECFS, post-exertional malaise, and why being “deconditioned” is not the cause of her condition. (10 mins) Aired yesterday.

youtu.be/uNbKpnxX3jU?...

YouTube video by HLTH Compliance Episode 8: "Treating ME and Long Covid with Dr Binita Kane" | HLTH Chat Podcast

Full video: Dr Binita Kane on her journey from NHS respiratory consultant to setting up an ME and Long Covid clinic (52 mins).

youtu.be/pk00btt7CVs?...

Clip: Dr @binitakane.bsky.social explains how ME is an energy-limiting illness.

The hallmark symptom, Post-Exertional Malaise (PEM), means even normal activities can trigger a worsening of symptoms. Some of her patients have to choose between a shower or preparing a meal that day.

Dr @binitakane.bsky.social explains how a theory that #MECFS is caused by deconditioning and a fear of exercise permeated medicine and framed the illness as psychological. This led to the patients being neglected, gaslit, and some would say abused. Causing huge trauma for the community.

Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention.

Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.

YouTube video by Broken Battery BBC South Today | ME/CFS Alliance Event

Full video (3 mins): BBC South report on an ME/CFS Alliance event on the future of research. Chris Ponting discusses findings from DecodeME, while patients describe living with the condition and their frustration at the lack of further government funding.

youtu.be/mUetU91KW98?...

Clip from yesterday’s BBC South report about the #MECFS Alliance event on the future of #MECFS and #LongCOVID research. Sam, an ME patient, says the government failing to fund further research after the success of DecodeME is “absolutely disgraceful”.

For anyone who would like the clip (including George).

"Those with ME have experienced years of being treated unjustly. Sometimes, it feels endless and irreversible. But remember this: getting things done in parliament starts with having MPs on your side." Tessa Munt MP. New #ThereForME Substack post.

We're delighted to share today's #ThereForME blog from friend of the campaign @tessamunt.bsky.social.

In her blog, Tessa lays out the case for change and how to get involved.

Link in next post 👇

The case for change for people with ME — and how to get involved A guest post from Tessa Munt MP

www.thereforme.uk/p/the-case-f...

"One should not give a poisoner medicine,
A conjurer fine apparatus, nor
A rifle to a melancholic bore."
WH Auden

Not to mention the biggest arsenal in the world to a narcissistic attention-seeker.

If any #pwME would like to send Savannah Vitoria-May a card for her 24h birthday on Saturday, her new address is below. We are all hoping she is receiving far better care in the Wonford than she did in QEH. Let’s celebrate her move and send her some love. 💙 #ME

@sharonhodgsonmp.bsky.social will replace Ashley Dalton
Assuming she therefore takes responsibility for the Delivery Plan for #ME given that #pwME remain in an ongoing crisis with patients lives at serious risk while under
@england.nhs.uk care, we need her assurance that she will prioritise #ME

So incredibly grateful to you for all that you're doing

YouTube video by HLTH Compliance Episode 8: "Treating ME and Long Covid with Dr. Binita Kane" | HLTH Chat Podcast

Just over a year ago, I left my 25 year NHS career to dedicate my life to a group of patients who remain largely unseen and unheard by the NHS - people with severe #LongCOVID and Myalgic Encephalomyelitis (#ME). 🧵

youtu.be/pk00btt7CVs?...

Promoting 100% attendance puts pupils and teachers at a higher health risk and is counterproductive during periods of widespread illness

Safe Air Schools UK has been calling for attendance policies aligned with public health, including ending the counterproductive 100% attendance awards that penalise medically vulnerable pupils

#CleanAirForAll
#LongCovidAwareness

Donald Trump is a global chaos generator. He couldn't give a damn about the Iranians and will walk away the moment things get difficult, leaving a trail of pointless death and destruction.
It's all about spectacle for him. Once that's achieved, job done.

It would be great if someone feels able to invite
@greenpartyhan.bsky.social to be a member of the APPG on #ME now!
@sianberry.bsky.social @tessamunt.bsky.social ?

Hannah Spencer: the Green MP speaking to everyday people’s frustrations Winner of Gorton and Denton byelection was driven into politics by growing gap between super-rich and the ‘rest of us’

The small, brave band of MPs who represent the trampled, not the tramplers, has a very welcome new member.

We should all ask ourselves why, in a supposed democracy, such representatives are so rare.

www.theguardian.com/politics/202...

Jonathan Edwards and other members of @scienceforme.bsky.social are drafting a document on what we want in terms of service provision for ME/CFS. Latest draft here: www.s4me.info/threads/a-th...

All welcome to comment and make suggestions before the document before it is finalised.

@ashleydaltonmp.bsky.social
Your words “these must become never events”

PLEASE INTERVENE TO SAVE LIFE
Savannah has not eaten for 9 weeks. There are no NHS services for severe ME - 7 months since publication of the Delivery Plan for ME/CFS

www.meresearch.org.uk/claims-of-nh...

Speakers include Christopher Armstrong, Chris Ponting @cgatist.bsky.social , Oystein Fluge, David Putrino @putrinolab.bsky.social , Carmen Scheibenbogen @scheibenbogen.bsky.social , and many other ME/CFS experts.
#MEcfs #LongCovid

How is Reform’s charmless candidate still a contender in Gorton and Denton? Ask Labour | George Monbiot This byelection should have been a stroll for Keir Starmer’s party. Instead, all hope of defeating Matt Goodwin now seems to lie with the Greens, says Guardian columnist George Monbiot

If Labour followed its own logic, it would now step aside and let the Greens walk home in this crucial by-election. It is hard to imagine how Starmer and co could have made a bigger fist of this - and of everything.
My column.
www.theguardian.com/commentisfre...

Broadly speaking, there are 2 political factions. Not Labour v Tory/Reform, Republicans v Democrats etc, but an economic elite, operating globally, versus all of us. Though they are small in number, through the power of the political, media and social media systems they control, they keep winning.

The British Association of Clinicians in ME/CFS issued a "therapy guide" last year. Very unsatisfactory. Professor Jonathan Edwards and colleagues have responded in an open letter. I spoke with Professor Edwards about it. virology.ws/2026/02/20/t...

Graphic with a dark, moody photograph of a red fly agaric mushroom with white spots growing in a mossy forest. The background consists of blurred, dark tree trunks. White serif text over the image reads: "Psychologisation 101: Definitions, Distinctions, and Why It Matters." At the bottom, in a smaller italicized font, it says "Long Covid Advocacy" next to a small bookmark-style logo.

🌟The first in our new 101 back to basics series.

In this article we look at Psychologisation.

If there's a topic you'd like us to cover please let us know in the comments!

🎧 Audio available

🖇️ tinyurl.com/52vthd5b

An image titled "PROGRESS WORTH CELEBRATING" announcing that Phase 1 of SEQUENCE ME + Long Covid is now funded for two years. The text explains it is a bold study exploring root causes through large-scale, whole genome sequencing, building on the DecodeME study. It notes the proposed £20 million study is the largest for any disease and still needs funding. The bottom features a "LONG COVID ADVOCACY" logo with a purple and blue gradient hand icon.

🎉 Some Good News with the launch of SEQUENCE ME & Long COVID.

Led by Ponting & Birney, this bold study is exactly the direction research needs to take.

More details & donation link on Action for ME website:

🖇️ tinyurl.com/mr96dxj4

A screenshot of a text document on a purple background under the heading "Summary." The text criticizes a healthcare document regarding ME/CFS, stating it fails to move toward an evidence-based approach and serves the interests of BACME members rather than patients. It argues that current policy lacks an evidence base, perpetuates patient distrust, and that resources should instead focus on medical care for severe cases and establishing a specialist medical "home" with a research base to improve patient outcomes.

✉️ Strong Open Letter from Bull, Edwards & Crawford in response to BACME's 'Guide to Therapy' 2025.
👉 Dysregulation theory speculative
👉 Vague active therapy rec that serves BACME more than patients
👉 Deceptive jargon

In essence = BACME should be shut down

🖇️ tinyurl.com/373hbbc5

a white bread sandwich with baloney in and crisps on the side. A post by Long Covid Advocacy

🥪Beware if someone serves you a baloney sandwich:

Bread = Lots of über praise about how they believe you, your symptoms are 'real'
Filling = Then comes the psychologising!
Bread = More sympathy on how the illness has been dismissed & the stigma etc.

💣 Medical love bombing is medical gaslighting.