Ellie

Trial By Error: Reporting on ME, ME/CFS, Long COVID, & so on... Ten years ago this month, I launched Trial By Error with a 15,000-word investigation of the fraudulent PACE trial, which tested cognitive behavior therapy and graded exercise therapy as curative treatments for what was then being chronic fatigue syndrome. What I thought was a one-off somehow morphed into an extended academic project on psycho-behavioral research across a broad range of conditions, including what is known as Long COVID. Amazingly, the pandemic and its consequences have rendered much of my earlier work relevant in a way I could never have anticipated. I had planned to end the project a couple of years ago, but decided to continue as I saw the same investigators I'd already criticized for their flawed research pursuing the exact same strategies in taking on Long COVID. This current crowdfunding will cover my work on Trial By Error and my position at Berkeley from January-June, 2026. Assuming it goes well, there will be one more crowdfunding campaign next spring to cover July-December, 2026. I plan to retire from Berkeley at the end of 2026. (I will be 70 on October 10, 2026.) I have been busy since last spring’s crowdfunding!!! *I’ve written dozens of posts on Virology Blog, many explaining why awful papers about psycho-behavioral interventions for ME/CFS and Long Covid are, in fact, awful. *I've covered news events and developments not only in the UK and US but also in multiple European countries as well as Australia, New Zealand, and Canada. *I've posted video interviews with Yale immunologist Akiko Iwasaki about the latest in Long COVID research, University of Edinburgh geneticist Chris Ponting about the DecodeME findings; Columbia University's Ian Lipkin about immune-related abnormalities in ME/CFS; the UK ME Association's Charles Shepherd about the UK government's pathetic plan for ME/CFS; and others.

Please support Dr David Tuller's important work: he has the necessary skills, knowledge & networks to be able to challenge those who promote dubious psychobabble theories & that conditions can be overcome with enough effort/discipline

crowdfund.berkeley.edu/project/47768

#MEcfs #LongCovid #PwME

Half pale blue curved edge and half white curved edge background. The words ‘Share a story by Anna Civil’ at the top. In the centre a graphic of notebook. The words ‘Anna shares about her and her daughter’s experience of ME.’ underneath. In the bottom right hand corner www.smileforme.org.uk/shareastory website link and Smile For ME logo. The other image is Anna’s words which can be found on our website.

Share a story by Anna Civil: www.smileforme.org.uk/shareastoryannacivil 🩵

It seems pretty clear to me now: Keir Starmer would rather lose to Reform than to the Labour left, which is his real enemy. Any policy that might recover lost ground with voters has to be struck down, as it looks like a concession to the Labour left. And he and his team cannot contemplate that.

I love how Russell T Davies always uses his platform to fight for progress - I hate how it is always so necessary

Dad’s books are full of empathy, common sense, and a healthy suspicion of the powerful. But at its heart his work is also about how systems keep people poor while pretending it’s their own fault. So I hope Kemi’s taking notes as well as reading the jokes.

Mourning those murdered by Hamas isn't incompatible with mourning those murdered by the Israeli state.

Demanding that the hostages return isn't incompatible with naming & demanding an end to genocide.

Naming the power imbalance & impact thereof doesn't desecrate those murdered two years ago today.

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot The notion that this illness is psychosomatic is having devastating effects, says Guardian columnist George Monbiot

The above quote from Monbiot comes from his article on #MECFS

It’s a scandal now impacting #LongCovid patients as many of them develop ME as part of their LC.

www.theguardian.com/commentisfre...

Simon Wessely is a key figure in what @georgemonbiot.bsky.social called “the greatest medical scandal of the 21st century.”

He helped destroy the lives of millions of #MECFS patients around the globe.

Now the UK govt want him deciding if mental illness and neurodivergence is “over diagnosed.” 🤦🏻‍♀️

Northern Brown Argus butterfly on Common Rock Rose

Together with partners, we've managed 8,510 hectares of habitat for butterflies and moths across the UK over the past year - that's equivalent to over 12,000 football pitches!

Find out more about our conservation projects 👉 butterfly-conservation.org/our-work/con...

📷: Iain H Leach

The background is two tones of duck egg blue. Up the left hand side are the words: Reader Review. The main image is of the cover of the book Crafting a Path Through Illness - exploring creativity while chronically ill by Germaine Hypher. Under this are 5 stars and the following text: If you would recommend this book, please leave a review (no matter how short) on Amazon, Goodreads, or the platform of your choice. Thank you!

It brings me such joy to read your appreciative words… and I’m hungry for more! Reviews are so helpful for potential readers so please do share any good thoughts you have about Crafting a Path Through Illness on the platform of your choice.😀
#chronicillness #chronicpain #me/cfs #craftsky #bookreview

NHS could cease to function under Labour’s new visa rules, say nurses Exclusive: Royal College of Nursing says plan to tighten rules for foreign workers is ‘pandering’ to Reform UK

The NHS and social care would cease to function under UK govt’s new rules on foreign staff.

Workers will have to wait – from 5 to 10 years – before they can apply for indefinite leave to remain, claim any benefit, childcare, or housing support, despite paying taxes

Govt appeasing Reform.

I like Zack Polanski for the same reason I like Zohran Mamdani.

He’s happy to stand for something.

And in a world of pandering focus grouped bullshit politics, it’s really kind of refreshing.

How is this department allowed to continue to send out such shite communication, to a vulnerable group of people - vulnerable in the sense of the MASSIVE power imbalance. Why isn't it held (audited, penalised) to a higher standard? Why is the DWP allowed to be so inhumane? It's shocking.

I hate the DWP so much. Any letter from it raises more questions than it answers. It's an abuse of power and causes unfair stress. It is never a competent, let alone helpful and kind, letter. Today I received two, near identical. Oh and a paltry £10 'Christmas bonus', I mean, ffs.

#DWP #Inept

Mike Harley is a marathon running machine, raising funds for ME research. £52,000 and counting!

@mikeseumarathons.bsky.social

#MECFS #LongCovid #pwME

Same here. I'm not anti GPs, I've worked in the NHS, have relatives in it. I have respect for all healthcare workers & appreciation of the stressful jobs they do. But the fact that this isn't known or ever questioned surprises me too. Especially when the NHS is under pressure to save every penny.

Healthcare should be guaranteed as a human right #MedicareForAll @salaambhattiva.bsky.social

I agree. There absolutely are many great GPs out there, & they're not responsible for the system.

But there are many GPs who seem to work for their business first & patients second. Most people don't even know that GPs are privately run, that they refused to be part of the NHS. They aren't NHS.

Some may be struggling. There are always good souls trying to do the right thing. But there are also practices running with healthy surpluses rather than investing that money back into desperately needed services. If there a good reason? If so, what is it? If not, who is doing anything about it?

It is past time that we held GP practices to account for their own actions rather than blame the NHS. They are private sector companies on a contract with the public sector. They are Ltd companies by shares and some are making a profit. And yet we are expected to support them without question.

Campaign Update #26 We’re hitting your inbox today from a moment of reflection.

Read here 👇

www.thereforme.uk/p/campaign-u...

Campaign update 26. This week: What's happening in Westminster? Long Covid advocacy overseas. New #ThereForME Substack post.

From Lib Dem conference to Washington DC - today's #ThereForME campaign update shares an update from advocacy in the UK and overseas.

Read on to find out more 👇

(Link in next post)

🙏 Un grand merci à elles pour leur engagement.

Merci également à Amélie Rigo, journaliste de DNA, qui a déjà écrit un article sur Anaïs et Caroline l’année dernière : www.dna.fr/sante/2024/1...

Le 14 octobre, elles organisent à Haguenau (salle Bloc Session) une soirée pour l’EM ➡️ stand d’infos, expo photo et quiz (lots à gagner)

La moitié du prix des entrées ainsi que les bénéfices des ventes seront reversés à notre association, dont elles sont membres actives.

Elles y racontent leur parcours, la réalité de la maladie et leur engagement pour la faire connaître.

Dans un article paru hier, Dernières Nouvelles d’Alsace donne la parole à Anaïs Dangel et Caroline Jardin, toutes deux atteintes d’encéphalomyélite myalgique (EM).

🗞️ www.dna.fr/sante/2025/1...

Gary Neville, "Brexit has had a devastating impact on this country"

"The messaging is getting dangerous"

"All these idiots out there spreading hate speech in any form, abuse in any form, we must stop promoting them"

"And get back to a country of love, peace and harmony"

"And become a team again"

Robert Jenrick lists 30 'activist judges' he vows to axe in war on UK's open border In a bold move, Robert Jenrick is set to unveil a controversial plan targeting what he calls 'activist' judges, at the Conservative Party conference.

We've already seen judges and lawyers being targeted as "enemies of the people". This increases risk of threats/attacks, while undermining judiciary as a whole. Couple it with Tory plans to scrap immigration tribunals and legal aid for people seeking asylum and it shows utter contempt for the law.

Simon Wessely — the controversial psychiatrist once dubbed “Britain’s most hated doctor” has been appointed vice chair of Labour’s review into overdiagnosis of mental health and neurodivergence.

www.benefitsandwork.co.uk/news/controv...

Shame on Labour to be talking about overdiagnosis of mental health problems. Also simultaneously ignoring the mountain of research on neuro covid and the mental health issues known to be caused from COVID infections! We need urgent loud opposition to this. 🧵