#MyalgicEncephalomyelitis(M.E) sufferer. I had a virus & didnt recover. Are questions usually rhetorical? I cannot give blood: https://xitter.gq/t.co/tU1sspbOiU
UK
Joined July 2011
- Tweets10.4K
- Following1.7K
- Followers1.2K
- Likes9.1K
Heath retweeted
Hi everyone, we’ve been working on something 🙏🏼 I’ve written a second letter to Andy Burnham, alongside 360 sports people, to urge him to meet with me and fund research into my much neglected health issue which impacts millions of others.
I can’t believe 360 people signed in just 1 week, so many amazing names and messages still coming in of people wanting to add theirs (so feel free to message to add yours, we’re keeping on the pressure!!!)
The list includes 114 Olympians, with 77 medals between them (and that’s not even including Worlds and Europeans 🤯). Also some huge names from football and many other sports!!
Thank you SO much to everyone that signed, I can’t tell you how much it means to me when I’m truly at rock bottom ❤️❤️❤️
I know everyone wants their issues taken seriously, but this has been neglected like nothing else. WE HAVE 0 APPROVED TREATMENTS!!! Please listen 🙏🏼 @andyburnham @number10gov @UKLabour @DHSCgovuk
Heath retweeted
My report has now been published!
- Just under 70% of those surveyed are at least housebound due to their chronic illness. Over a quarter are bedbound or hospitalised.
- Yet, 92.0% of respondents were no longer under the monitoring or care of any NHS specialist department, and 72% were no longer under primary care (GP) monitoring.
- 88.9% of bedbound participants with "contested" conditions are too ill to access face-to-face NHS care at all, with no adaptations and appropriate travel arrangements being facilitated so they can get the help they need – which is rarely available within the NHS.
This doesn't even scratch the surface of the shocking revelations I encountered through this research.
Forced to Go Private is now live, with voiceover available. As always, this is free of charge. (Link in first reply.)
I don't usually ask this, but shares of this report would be extremely useful, so it doesn't just remain within our echo chamber. Therefore, please consider retweeting or passing the link on. This is a scandal and is completely unsustainable, both for patients and the handful of private services who are able to offer at least some of the help we need.
Thanks once again to the amazing volunteers who took part in this survey, despite being in such poor health. I truly hope this does you justice and that together we can make change. 💚
#NHS #longcovid #dysautonomia #MCAS #MECFS #EDS #vaccineinjury #PAIS #POTS #lyme #scandal #medicalgaslighting
Heath retweeted
Alem Matthees, the ME/CFS patient in Perth, Australia, who "liberated" the raw PACE trial data, has been communicating again and is also on BlueSky. Here's some of his observations about being severely ill: virology.ws/2026/10/30/trial…
Heath retweeted
We’ve been blown away by the response to my interview with @BBCSport & @KatieFalkingham , thank you so much to everyone who has taken the time to read and engage with it ❤️ millions of views across multiple platforms really is immense.
We have since written to @andyburnham , calling on the @UKLabour government to fund research into this horrific illness. I know there’s so much more we could say, but with limited capacity, we’ve tried to focus on the lack of funding, resources in the NHS and how much it’s actually costing the government.
As you can see on the slides, it has been drastically underfunded compared to other illnesses and it is currently costing the UK Government far more than it would cost to fund research. ME is most often a post-viral illness. Therefore, since the start of the Covid pandemic, we’ve seen cases increase drastically and they will continue to increase. We need funding into research urgently. With estimates of people with ME being around 1.35 million, this is a lot of lives destroyed.
I’ve had thousands of messages on multiple platforms since sharing my story so please bear with me ❤️
Thanks to @ThereForME_UK and @wecrunchme for the stats.
Heath retweeted
From @BethDobbin former Olympic athlete, now bedridden with #ME. Still classified as a psychiatric illness in some medical textbooks. Many people still choose to believe this to be the case. “A major medical scandal”
Heath retweeted
youtu.be/RiwX9Y0NbiQ?si=oA3q…
As a psychiatrist I would like to recommend that all my colleagues in medicine, nursing and allied health watch thus. I’m with @GeorgeMonbiot - this is the greatest scandal in modern medical history.
Heath retweeted
“The indifference is just unbelievable. It’s just incredible how people have shut their minds to the terrible suffering that’s going on.”
George Monbiot on what needs to change for people with #MECFS, and the need for more advocates, journalists and politicians to speak up.
Heath retweeted
David Tuller interviews George Monbiot on recent Guardian article: 'Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed'.
In the interview, Monbiot says of #pwME “They need more advocates. They need people like you … and they need far more journalists and far more other people, far more politicians supporting them.”
Read a summary and extracts or watch the full interview here: meassociation.org.uk/y82q
#MECFS
ALT IMAGE DESCRIPTION: Photo of a person interviewing another by holding a microphone to them. Wording reads: David Tuller interviews George Monbiot on recent Guardian article. MEA logo.
Heath retweeted
Sharpe will never accept that he's done any harm at all, he'll no doubt defend what he's done for the rest of his life, but I do hope others hear these words, look at the evidence, learn & change how they understand #ME & #pwME who've had this incalculable harm inflicted on them
“The harm you have done is incalculable. It’s not me who has been spreading great harm around the world. It’s you, mate.”
George Monbiot on being accused by Prof Michael Sharpe of “spreading” #LongCovid by writing about it and why he started writing about the #MECFS scandal.
Heath retweeted
“The harm you have done is incalculable. It’s not me who has been spreading great harm around the world. It’s you, mate.”
George Monbiot on being accused by Prof Michael Sharpe of “spreading” #LongCovid by writing about it and why he started writing about the #MECFS scandal.
Heath retweeted
Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Bc the mechanisms that ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack
ALT Screenshot of the header of a published paper: Studies in History and Philosophy of Science Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis Chloé de Canson
Heath retweeted
"Based on the current evidence, we can say that #ME appears to be a distinct disease – with its own genetic profile. We have not seen any genetic overlap with mental health conditions."- Professor Chris Ponting
@DecodeMEstudy
#MedTwitter 🧬
scienceillustrated.com/healt…
Heath retweeted
“ME/CFS patients are deeply inconvenient.”
George Monbiot on how people with #MECFS need long term support, but governments and insurers have an incentive to “brush it away” and dismiss patients leaving them “massively mistreated, maligned” and “blamed for their illness”.
Heath retweeted
This interview with George Monbiot about the plight of people with ME/CFS has had almost 5,000 views since I posted it yesterday...youtube.com/watch?v=MaaeQ7cr…
Heath retweeted
Great talk between @davidtuller1 & George Monbiot - George mentions an interaction with Oxford Professor M Sharpe of PACE trial, this same Prof phoned up my Head of Centre to complain about me writing about ME/CFS and critiquing his model - This was bullying and I also asked for the evidence, because my papers were factual and reviewed the science. youtube.com/watch?v=MaaeQ7cr…
Heath retweeted
We #ME patients have been an inconvenience for decades.
With relief both governments and health insurers handed us over to the Psychiatrists and they continue to remain as the bottom line for most healthcare providers.
Heath retweeted
Here's my interview with Guardian columnist George Monbiot about his recent column on the awful treatment of people with ME/CFS: virology.ws/2026/10/01/trial…
Heath retweeted
@TheLancet how can you possibly continue to defend your support for the PACE Trial when its lead to the catastrophic harm of millions of patients with M.E?
"Abandoned, dismissed & gaslighted: there is no excuse for the way ME sufferers have been betrayed"
theguardian.com/commentisfre…
