1/x #RANT 2018 wurde mir nach jahrelanger Suche und schwerem gesundheitlichem Absturz die #MEcfs Diagnose gestellt (Berlin Charité), incl. orthostatischer Intoleranz, was später als #POTS korrigiert wurde. Und das war's.

We live next to you But our days begin and end in a flash Inside a depleted energy envelope Our bodies on invisible leashes Perhaps one day we will have a standard unit of MEasure MEanwhile we live dangerously accruing physiological payback upon unpayable payback On repeat #ME/CFS #pwME

Monthly reminder that this is currently NOT an exaggeration or hyperbole. This is the simple objective reality for #pwME. #GreatestMEdicalScandal

💡 "We should be as cautious with exercise in long covid as we have come to be in ME/CFS...I don’t know how often we need to continue to put our finger on that light socket.” @sunsopeningband.bsky.social GREAT article - completely debunks those trying to push exercise 🙌

"Life" as a #pwME in the UK in 2026. Despite talk of "never-events" and a "final" delivery plan. Nothing meaningful is being done. An active choice by those with the power to chose. If you have the wrong illness, this country kills you slowly through 1000's of agonising cuts of neglect.

@tessamunt.bsky.social more evidence of systemic harm by our lovely government.

Many Drs & HCPs still believe that the advice that Emma was given, which made her #ME so much worse, is the correct advice They're supported in many cases by the Royal Colleges, who refuse to support the '21 @nicecomms.bsky.social g'lines for #ME Healthcare is still unsafe for #pwME

How would you react if you went to your Doctor after losing your health because of #LongCOVID and were told to do Yoga by Adrienne? It's 2026. Are they doing this to 30% of their patients? #medsky #gaslit Is this a systemic Semmelweis reflex?

A friend of mine a #pwME for 30+ years was diagnosed with early onset dementia 6 yrs ago Her carer/husband📧me to tell me that unable to give her the care she needs she's now spending her last days in a care home Another #pwME who never saw recognition for #ME, care or treatment💔

1) Re-reading some ME/CFS history: in the late 1990s the CDC diverted millions of dollars budgeted for ME/CFS into work on other diseases. The CDC presented misleading data to Congress, a whistleblower was needed to uncover the misuse of funds.

@sharonhodgsonmp.bsky.social Please. Take action now. These courses are far from perfect but they'd be a start. Because as long as there's no real biomedical specialist service for #pwME, training on how to spot and prevent PEM for NHS staff is the single best thing to improve healthcare for us.

Protection from PEM should be foremost. Making those new CPD courses mandatory would be a quick and low cost way to start. After all, the NHS has mandatory FII training. Why wouldn't it have mandatory PEM training? With two thirds of us permanently worse from it, PEM is a safeguarding issue.

We dont want anymore words from politicians pretending to care. This ⤵️ doesn't cost a single pound. It could be implemented TODAY. It doesn't need any agreement or taskforce. It doesn't even create any new liability. It just needs a decision. There is no excuse! 😡 @sharonhodgsonmp.bsky.social

This. In fact, Ive never seen a community so unfairly treated by the state and abused for so long behave so civil and constructive as #pwME... They know we cannot get out of bed because otherwise...

And it shines the absolutely ignominy for gvts pretending to be leaders on welfare and social justice like 🇨🇵 🇬🇧 and 🇪🇺 Every day it passes without taking action is making this historical stain worse. #GreatestMEdicalScandal @sharonhodgsonmp.bsky.social @stephanie_rist @sant.europarl.europa.eu

Germany, like any other place in the world, has still a loooong way to go regarding #ME, but PHEW... what they have achieved politically, financially, medically, and socially (press included) in 4y for Long Covid / Myalgic Encephalomyelitis seems simply 'impossible' anywhere else. Danke 🤝🙏💜

There's nothing else to add....

NEW | On an odd choice… WHY DID BBC BREAKFAST GIVE REFORM UK A SPECIAL GRAPHIC? A small detail in a brief report sparks some big questions about what the national broadcaster is doing during the run up to local and national elections. brokenbottleboy.substack.com/p/why-did-bb...

Donated David Tuller DrPH has shown he has a: -good skill set for this type of work -good knowledge base from following the field closely for many years -an appetite as it can be very draining Proponents of exercise/psychologicalisation/etc are still around #MEcfs #LongCovid #CFS #PwME

After Condé Nast's decision to close SELF, I spoke to chronically ill women about what the women's health site meant to them. "We have to acknowledge chronic illness as a politically, culturally, and socially marginalized category" Latest for @motherjones.com. www.motherjones.com/politics/202...

If you’re able, please donate… David is a hero!

Labour, far from supporting the NHS is destroying it. Not announcing the changes honestly but behind our backs and apparently behind the backs of the MSM who aren’t reporting it. Private healthcare is winning, we are being blindsided.

A tragic cautionary tale that was posted on my Facebook page. 😢 #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

And so it goes on for #ME patients. We aren’t even called patients by many HCPs they call us malingerers, wrong thinkers and the latest ‘acquired neurodiversity.’ This testimony and plea from 2018, it could have been 1987 or 2026 because nothing changes. We just get older as we rot in our beds.

Thank you so much for sharing, @tessamunt.bsky.social I'm really looking forward to sharing more on Monday 11th May (12.00-13.30 BST). You can join us (for free) via Zoom www.eventbrite.co.uk/e/gender-aff... @durhamimh.bsky.social @vpatton.bsky.social @literarti.bsky.social

BREAKING: We’re taking the government to court over Palantir. The government is refusing to hand over important briefings given to Wes Streeting about the £330m NHS data contract with Peter Thiel’s surveillance firm So we’re taking legal action. democracyforsale.substack.com/p/breaking-w...

👏Excellent commentary to @BBCR4Feedback by Helen Gibson, @tedmonroe91.bsky.social & @nickyproctor.bsky.social 🧪 It also shows the power of @DecodeMEstudy in refuting stigmatising, outdated & false views of people like O'Sullivan.

Helen Gibson and Edward Monroe on BBC Radio 4’s Feedback challenge Suzanne O’Sullivan’s claims that #LongCovid is largely psychosomatic when she was interviewed on Amol Rajan’s podcast. Mentions #MECFS, NICE’s 2021 guidance and DecodeME genetic findings.

Important post from Dr Todd Davenport about PEM. likeannopeningbandforthesun.substack.com/p/in-pursuit...

📰 Publié dans ICI Picardie, il apporte un éclairage essentiel sur l’encéphalomyélite myalgique (EM), en abordant plusieurs aspects majeurs de la maladie : le malaise post-effort, le sommeil non réparateur, l’errance médicale, ainsi que les risques liés à la réadaptation à l’effort pour les patients.

TRAILER: Buried Alive with M.E. I’ve spent the last months making a film for M.E. Kills, an online exhibition by A Quiet Storm. People with ME die every week. Many more are left to rot in dark rooms without care, disbelieved and dismissed. It’s a living death. #pwme #millionsmissing #severeME 1/

Lotte has lived with #LongCOVID for 6 years. At her worst she spent 22 hrs a day in bed and was unable to hold a conversation. She worries about her future as the Dutch government doesn’t treat it as a priority and not enough is being done to help her take part in society again.

According to David Tuller, Prof. Michael Sharpe’s “unbecoming” comment to Carol Monaghan MP in 2018 was about “misrepresenting science in parliament”. David also reported there was nothing defamatory said in the debate. trialbyerror.org/2018/06/25/t...

Please Help David Tuller @davetuller1.bsky.social , Our Champion! crowdfund.berkeley.edu/project/49720 Image is from the AMMES April 2026 newsletter #MEcfs #PwME #LongCovid

@europeanmealliance.bsky.social EMEA has been selected as a participant in the @whoeurope.bsky.social Public Health Innovation Platform, within the “Policy, Governance & Financing” thematic group. This is not a symbolic appointment. It provides EMEA with a formal seat at a WHO-hosted table where

Imagine you couldn’t watch television because the sound and colours were too exhausting or needed help just to eat, wash or go to the toilet. This can be a reality for people with a severe form of #LongCovid and #MECFS. Clip from German TV.

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/49720 #MEcfs #LongCovid #PwME

Well, Berkeley's latest crowdfunding campaign for my Trial By Error has now launched: crowdfund.berkeley.edu/project/49720

Suzanne O’Sullivan was on the BBC Amol Rajan podcast saying #LongCOVID is psychosomatic for a large proportion of patients. I’ve written a response highlighting a number of problems with this claim on X, which can be viewed via this webpage: twitter-thread.com/t/2040085001...

I’ve written a short thread responding to Suzanne O’Sullivan’s claim that criticism of her books largely comes from “10 people on social media” highlighting responses from UK ME charities. twitter-thread.com/t/2041098446...

Why does the University of Bristol website still list Professor Crawley, the ethically and methodologically challenged pediatrician and former grant magnet, as an active participant in a training program? Has she retired, or hasn't she? virology.ws/2026/03/21/t...

The biopsychosocial ideological brigades don't seem to understand that continuing to cite fraudulent research like PACE, as they do in a new paper in a Scandianvian primary care journal, makes it hard to take anything they write seriously. virology.ws/2026/04/01/t...

Expert perspectives on Myalgic encephalomyelitis/chronic fatigue syndrome – Insights from the 3rd International Conference of the Charité Fatigue Center @scheibenbogen.bsky.social et al. May 2026 Highlights ME/CFS involves immune, vascular, and metabolic dysregulation. Increasing evidence

Same old story from psychosocial researchers. An unblinded CBT trial found modest gains in the subjective outcome of fatigue. Which is almost likely bias. They measured physical activity with wearables, but failed to publish the results, later acknowledging no gains. So no evidence CBT works.

Anyone know whether The 'Skeets' @continuitytweets.bsky.social (aka @rfh1955.bsky.social ) is OK? No sign on here for over 3 weeks now. 😟 I hope they're just taking a break, but I do worry when my tweeps are silent for a long time.

Parents and the few partners of #pwME who do not NOW conform to the old orthodoxy - promoted by BBC Radio 4 Today & the Guardian - are persecuted daily, as I type, through statutory safeguarding proceedings: for caring. It's how Maeve, & countless others die. Please ACT @sharonhodgsonmp.bsky.social

Dr Charles Shepherd (@meassociation.org.uk) explains how in the 80s and 90s psychiatrists claimed #MECFS was due to “deconditioning” and “abnormal illness beliefs”. Graded exercise therapy made many patients worse, with some ending up in wheelchairs. It was only removed from NICE guidance in 2021.

@alastaircampbell2.bsky.social @rory-stewart.bsky.social @sharonhodgsonmp.bsky.social @theandrewgwynne.bsky.social For consideration. What is corruption - & how is it seeded?

No other disease process in the history of modern medicine has been so mischaracterized and trivialized, for so long as ME. While also being described over time, in outbreaks and sporadic forms and given different names. How does metabolism differ in #ME/CFS cases vs. controls? METABOLIC PATHWAYS

And I'll just leave this one here. It's from the PACE Trial Steering Group (TSG) minutes from April 2009, nearly 2 years before publication: