Sign in

Tom Parsons

@tomparsons.bsky.social
148 followers 116 following 223 posts

Writer, Musician, pwME.

PostsRepliesMedia
Reposted by Tom Parsons
Alem Matthees @alemmatthees.bsky.social · 23/09/2026
For the love of the universe and the sake of millions of people with #MECFS and #LongCOVID can some funding body please fund the rest of #SequenceME / LC already?! WGS is one of the greatest crowning achievements of science and has enormous potential for pointing the compass in the right direction.
actionforme.org.uk
Sequence ME & Long Covid
SequenceME & Long Covid is a major new whole-genome sequencing study to understand ME and Long Covid.
05725
Reposted by Tom Parsons
Alem Matthees @alemmatthees.bsky.social · 30/09/2026
Those with #MECFS who do *not* "look" fine are often treated like garbage too, because more ill often means more to blame. Many doctors who believe ME/CFS exists only accept a certain degree of disability, beyond that is then assumed must be due to personal issues rather than the illness itself.
25918
Reposted by Tom Parsons
Lizzy @hopefullizzy.bsky.social · 29/09/2026
In 3weeks I turn 32. I’ve never had a relationship. Never been on holiday with friends. Never finished my education. Never been out to work. Never lived away from family. Each year, my world gets smaller. It’s 2yrs since I ate a meal. 16years since I went out on my own. I have #MECFS
2196
Reposted by Tom Parsons
Adam @abrokenbattery.bsky.social · 29/09/2026
“They’re the victims of this, but then they’re victimised for the sin of having this illness.” George Monbiot on why government and society as a whole need to stop gaslighting people with #MECFS and making them feel they’ve done something wrong.
23815
Reposted by Tom Parsons
Alem Matthees @alemmatthees.bsky.social · 28/09/2026
(11/12) If government authorities and the medical profession took #MECFS seriously from the start and allocated resources in proportion to the prevalence and impact, there is a good chance that there would be effective treatments already or at least a major head start on the pathophysiology.
medium.com
ME/CFS Scandal Follow up
The ME/CFS scandal goes much deeper than my 27-minute explainer video. That was just an introduction — how for decades patients were told…
1163
Reposted by Tom Parsons
Alem Matthees @alemmatthees.bsky.social · 28/09/2026
(7/12) When I was informed that $1B+ was allocated to #LongCOVID research, I thought I misheard million for billion, because the #MECFS community was used to being handed crumbs, so it sounded too good to be true, especially when I also had hearing difficulties at the time. But it was ...
1101
Reposted by Tom Parsons
Alem Matthees @alemmatthees.bsky.social · 28/09/2026
(1/12) No. The painful truth about #LongCOVID is not the alleged suppression of brain retraining, but that the scale of the pandemic and aftermath were preventable. Systemic and collective failures emerged from a chain of poor decisions. Millions dead. Millions of lives ruined. Trillions $ lost.
wired.com
The Painful Truth About Long Covid
There might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.
24615
Reposted by Tom Parsons
Chris Ponting @cgatist.bsky.social · 28/09/2026
The 2026 PRIME symposium kicks off with reflections from Kelly McLellan on the importance of Patient and Public Involvement in ME/CFS research. #Prime26 #pwME #mecfs
14717
Reposted by Tom Parsons
Adam @abrokenbattery.bsky.social · 24/09/2026
Essential reading. New Guardian article from George Monbiot. 'Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed.'
Of course, as there is no effective treatment, it’s a difficult situation for doctors as well as patients. But even worse than no solutions is false solutions, and a dangerous, gaslighting, even punitive approach to a terrible disease.

Across the decades, millions of people have been neglected, dismissed and mistreated, and still it goes on. We need to ask why so many patients have been abandoned, why discredited and dangerous treatments continue to be prescribed and why ignorance and neglect still dominate, in the health system and beyond. In other words, there has seldom been a stronger case for a public inquiry.
04711
Reposted by Tom Parsons
Nina Weber @ninaweber.bsky.social · 24/09/2026
"We need to ask why so many patients have been abandoned, why discredited and dangerous treatments continue to be prescribed and why ignorance and neglect still dominate, in the health system and beyond." #MECFS
0227
Reposted by Tom Parsons
Andrew Gifford @andrewgiffordphoto.bsky.social · 24/09/2026
I'm re-reading Susan Sontag's 'Illness as metaphor' written in 1978. It's about quacks psychologising biological disease. The medical and health community and regulators all wrung their hands while quacks blamed patients for: TB, cancer and HIV/AIDS. And now for ME/CFS & Long Covid too. Criminal.
1335
Reposted by Tom Parsons
Frances Ryan @francesryan.bsky.social · 24/09/2026
As I lay in bed with PEM, always grateful to my colleague @georgemonbiot.bsky.social for helping bring M.E. into mainstream attention. The way people with M.E. are ignored and actively harmed by medics who have been trusted to help them is a hidden scandal. www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
718955
Reposted by Tom Parsons
George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
17925181713
Reposted by Tom Parsons
Frances Ryan @francesryan.bsky.social · 18/09/2026
“This isn’t the sort of prejudice that comes with an ableist slur or a violent push. It is the gentle, everyday belief certain kinds of lives – certain kinds of people – come with low expectations.” My column on the growing care abroad scandal and what it says. www.theguardian.com/commentisfre...
theguardian.com
An effective ban on disabled people leaving Britain? You read that right, and we will not settle for it | Frances Ryan
This scandal shows there are many who don’t expect us to live rich lives – and that paternalism lives on in disability services, says Guardian columnist Frances Ryan
24122
Reposted by Tom Parsons
Adam @abrokenbattery.bsky.social · 18/09/2026
"It turned out the study was full of holes." Highlights Dutch insurance physician Jim Faas discussing the problems with the £5M PACE trial for #MECFS on Dutch TV in 2017.
02513
Reposted by Tom Parsons
Alex @admiringbog.bsky.social · 15/09/2026
I was recently in the ER for IIH and multiple doctors asked me if I had any other conditions. I told them I had #ME/CFS. None of them knew what those letters stood for. It’s a common condition.
1223
Reposted by Tom Parsons
the Mountain Goats @themountaingoats.bsky.social · 15/09/2026
Well, every time somebody posts this, me & my drummer get tagged, so, preemptively: mountain goats are wild, majestic animals. The Mountain Goats are a band. Out of respect to our namesake, we do lick pee from rocks when we’re in a national park, but nobody ever airlifts us anywhere. We walk home
25991158
Reposted by Tom Parsons
Elke Hausmann @drelke.bsky.social · 15/09/2026
I can’t count the number of days I’ve had to simply endure in the past few years. The days you need to just somehow get through and hope that tomorrow will be a bit better. So many lost days. It never gets any easier. There are so many of us. #LongCovid #ME
54414
Reposted by Tom Parsons
Fred Rossi @darthfoo.bsky.social · 15/09/2026
Today has been hard. The pain is relentless, and my muscles feel like they simply don’t have anything left to give. Standing hurts. Moving hurts. Existing in my body hurts. Long COVID and ME/CFS can reduce an entire day to simply enduring it. #LongCOVID #MECFS #PwME
3242
Reposted by Tom Parsons
Cat Hulme @cathulme.bsky.social · 11/09/2026
Before I became disabled I was very pro-assisted dying. But since becoming disabled I've seen how ableist many medical staff are and I've lost trust completely. Also its been eye-opening as to how inadequately disabled people in the UK are supported to LIVE. People still don't believe me on this.
1193
Reposted by Tom Parsons
Adam @abrokenbattery.bsky.social · 11/09/2026
Simon Wessely remains highly influential and is currently a vice-chair of the government’s independent review into mental health conditions, ADHD and autism. www.gov.uk/government/c...
gov.uk
Independent review into mental health conditions, ADHD and autism
Documents relating to the independent review into the prevalence and support for mental health conditions, ADHD and autism.
1327
Reposted by Tom Parsons
Adam @abrokenbattery.bsky.social · 11/09/2026
Today marks 25 years since 9/11. 8 months after the attack, psychiatrist Simon Wessely argued that illness reported around Ground Zero was being wrongly attributed to environmental toxins, suggesting “World Trade Centre Syndrome” was driven by social and psychological factors.
Screenshot from the article
1210550
Reposted by Tom Parsons
Ed Zitron @edzitron.com · 10/09/2026
This Jacob Coxon thing is weird. He worked at Anthropic for six weeks and OpenAI for nearly three years. He’s doing a whole media tour without any real statements about what it is he’s scared of other than vague references to recursive self improvement, a theoretical ai that teaches itself.
471406264
Reposted by Tom Parsons
Alex @admiringbog.bsky.social · 14/08/2026
Surprised to see they’re still talking about “herd immunity” with COVID like it’s right around the corner. They’ve been saying this since the vaccines came out. It’s really misleading. And it gets in the way of real mitigation. www.mayoclinic.org/diseases-con...
mayoclinic.org
2151
Reposted by Tom Parsons
Chris Kerr @kerrblimey.bsky.social · 10/09/2026
Okay! Here’s the opening statement provided by the fired Rockstar workers. Key points: -There was allegedly a ‘mole’ in the union Discord server for over a year who funnelled info back to R* -It’s claimed R* only acted shortly after union members passed the 10% threshold for statutory recognition
130391
Reposted by Tom Parsons
Chris Kerr @kerrblimey.bsky.social · 10/09/2026
Last year, Rockstar was accused of firing over 30 workers for engaging in trade union activity. The studio said they were let go for leaking confidential information. The tribunal between the two parties begins today. I'll be attending and will do my best to provide updates over the coming weeks.
2746190
Reposted by Tom Parsons
Kelly @broadwaybabyto.bsky.social · 11/09/2026
The UK is voting on the Assisted Dying bill today. Most disability organizations oppose it. Safeguards have already been removed or rejected. Please listen to disabled Canadians. What was meant to be dignified quickly became coercive eugenics aimed at the most vulnerable.
16448209
Reposted by Tom Parsons
Kelly @broadwaybabyto.bsky.social · 09/09/2026
Sharing my 🧵 on Assisted Dying and why many disabled people fear a slippery slope This is based on Canada’s MAiD It’s been “offered” to me when I was clear I wanted treatment My condition wasn’t terminal I don’t oppose the right to die, but we must ensure disabled people have the right to live.
3229100
Reposted by Tom Parsons
Ed Zitron @edzitron.com · 09/09/2026
AI* has a >10%** chance to kill us all *not the AI we're working on but some other AI that we'll build for sure if you keep funding the company I work at **number I made up based on a still-theoretical technology that nobody has but we all love talking about
Evan Hubinger & @EvanHub • 10h
9 ...
To be clear, as we say in our latest Risk Report (x.com/AnthropicAI/st...), | think the risk from present models is low. What I am worried about is superintelligence arising from recursive self-improvement, as we have said is happening faster than we thought
Show more
Anthropic @AnthropicAI • Aug 14
As part of our Responsible Scaling Policy, we publish regular Risk Reports. These share detailed information on the risks of our systems and how prepared we are to address them.
Our second Risk Report is now available: anthropic.com/aug-2026-...
200
17 409
3.8K
Ill 1.6M
企
351106237
Reposted by Tom Parsons
Tom Kindlon @tomkindlon.bsky.social · 09/09/2026
10 years today, after a David vs Goliath FOI legal battle that damaged Alem Mathees, White et al were forced to release data from PACETrial (that cost UK taxpayers £5M) showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS. Please remind the world #MEcfs #PwME #CFS
 Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
Carolyn E Wilshire  1 , Tom Kindlon  2 , Robert Courtney  3 , Alem Matthees  4 , David Tuller  5 , Keith Geraghty  6 , Bruce Levin  7
Affiliations Expand

    PMID: 29562932 PMCID: PMC5863477 DOI: 10.1186/s40359-018-0218-3 

Abstract

Background: The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. However, the reported analyses did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence.

Methods: Here, we present results based on the original protocol-specified procedures. Data from a recent Freedom of Information request enabled us to closely approximate these procedures. We also evaluate the conclusions from the trial as a whole.
516575
Reposted by Tom Parsons
Tom Kindlon @tomkindlon.bsky.social · 09/09/2026
I’m sure I can speak for the PACE Trial investigators [Peter White, Michael Sharpe & Trudie Chalder] when I say they love when the re-analyses are highlighted online. 😜 #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
0268
Reposted by Tom Parsons
Charlie Jones @charliepsych.bsky.social · 04/09/2026
The Channel 4 revelations might not immediately change the minds of people who vote Reform. But it absolutely should change the position of the media giving them so much air time. Outlets that continue to fawn to them expose themselves as having zero credibility.
2536491
Reposted by Tom Parsons
ME/CFS Science @mecfsscience.org · 29/08/2026
1) New blog article: the hormone prolactin rises much higher in ME/CFS patients after taking buspirone than in controls. This is one of the most replicated findings in the field but for years this line of research was abandoned.
mecfsscience.org
Increased prolactin response to buspirone - ME/CFS Science
Multiple studies have found an increased response of the hormone prolactin to the drug buspironeContinue readingIncreased prolactin response to buspirone
34016
Reposted by Tom Parsons
Elke Hausmann @drelke.bsky.social · 31/08/2026
‚Her research found that GPs who use ambient voice technology believe that errors are more likely to creep in when the consultation is with more than one person, with patients with a complex medical history, (…)‘ #LongCovid #ME www.theguardian.com/society/2026...
theguardian.com
Doctors’ AI scribes get names of drugs and diagnoses wrong, NHS watchdog warns
Exclusive: Patients identify errors in consultation transcripts that are missed by GPs, Healthwatch England finds
0126
Reposted by Tom Parsons
ME/CFS Science @mecfsscience.org · 30/08/2026
1) 🇳🇱 In the Netherlands, ME/CFS patient and advocate Anil Van Der Zee was appointed Knight in the Order of Orange-Nassau. It's an recognition of his outstanding contribution to society, a very high honour.
19832
Reposted by Tom Parsons
Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 30/08/2026
Working in partnership with Jonathan Edwards at UCL, Jo Cambridge’s research revolutionised understanding and treatment of rheumatoid arthritis. Like Jonathan, she later turned her attention to investigating the mechanisms of ME/CFS. Her death is a great loss.
theguardian.com
Jo Cambridge obituary
Other lives: Professor whose research led to immunotherapies that have improved the lives of countless individuals
0166
Reposted by Tom Parsons
Anil van der Zee @anilvanderzee.bsky.social · 28/08/2026
So, I got royally knighted today. Woot!? Yes, I did. Adopted from Sri Lanka, knighted in the Netherlands. Who would've thought! The most important thing is that this award belongs to the whole community. Everything we do is teamwork. I'll write more after I recovered. #pwme #millionsmissing
1311023
Tom Parsons @tomparsons.bsky.social · 25/08/2026
youtube.com/watch?v=g3hJ... RIP Dolly Parton
youtube.com
Do I Ever Cross Your Mind
YouTube video by Chet Atkins - Topic
010
Reposted by Tom Parsons
Aparna Nair @disabilitystor1.bsky.social · 17/08/2026
I find that no one quite beats British politicians when it comes to pure hatred of disabled people--its a TOUGH competition, globally, Indians, Canadians, Americans, but the British cadre just do their hating with such vim and vigor
54215
Reposted by Tom Parsons
Grumpy-ish Brian🏴󠁧󠁢󠁳󠁣󠁴󠁿🇪🇺🇮🇪 @brian770.bsky.social · 17/08/2026
205158874195
Reposted by Tom Parsons
George Monbiot @georgemonbiot.bsky.social · 15/08/2026
The treatment of Jason Arday was massively out of proportion to his faults. People who have committed terrible crimes have received less scrutiny, yet I don't believe anything he did or said even crossed the threshold of criminality. How many of us would have survived what he was put through? 🧵
1023062609
Reposted by Tom Parsons
Frances Ryan @francesryan.bsky.social · 16/08/2026
Good on Alan Milburn - who’s leading the government review into youth unemployment - for saying the quiet part out loud.
Milburn dismissed “myths” about 18- to 24-year-olds being a “snowflake generation”, saying: “The problem isn’t shortage of effort on the part of young people. It’s a shortage of opportunities, jobs, support.”

He added: “There are two views about [the rise in youth ill health]. You can either say it’s fake or you can decide its real. It’s a real phenomenon. So we’ve got to deal with it and we have got to adjust our systems to deal with it.”
2616
Tom Parsons @tomparsons.bsky.social · 08/08/2026
Today is Severe ME day. I never thought that I could get this sick and be receiving LESS medical care. I never thought following the advice of clinicians could leave me mostly bedbound. I never thought I would lose the whole world this way.
15322
Reposted by Tom Parsons
Sarah Clarke - Not your doll @damselindystopia.northsky.social · 07/08/2026
This seems esp relevant while folks talking about Stock busting out "social contagion" in relation to disability. It's definitely not a new thing for bigots to do. transsafety.network/posts/simon-...
transsafety.network
Simon Wessely’s history of discrediting sick and disabled people could be bad news for trans health research priorities.
Psychiatrist Simon Wessely has been appointed to chair the National Children and Young People’s Gender Dysphoria Research Oversight Board. TSN outline our concerns about this appointment.
35716
Reposted by Tom Parsons
James Butler @piercepenniless.bsky.social · 07/08/2026
This is an attempted lynching, which will be treated with much less seriousness then pensioners holding up Palestine Action placards.
9624264
Reposted by Tom Parsons
Elke Hausmann @drelke.bsky.social · 07/08/2026
#LongCovid #ME 1/3
The unsympathetic way in which young women in general who are using a stick are presented here (her stick is most likely just an affectation - she's not sick, she's just anxious), or a wheelchair (oh my god she got out of it and can actually walk! She must be faking it!), is just presumptive and not conducive to creating a more caring society for everyone.
281
Reposted by Tom Parsons
George Monbiot @georgemonbiot.bsky.social · 06/08/2026
I know he has a lot on, but in the midst of a ferocious drought, fires, heat events and severe threats to food production, it would be quite edifying to hear Andy Burnham mention climate breakdown.
1092657609
Reposted by Tom Parsons
Frances Ryan @francesryan.bsky.social · 03/08/2026
I’m very much on the “don’t speak ill of the dead” side of civility but that doesn’t mean distorting what someone did with their life, particularly if they used their position to hurt others. Liddle was not a brilliant provocateur. He used misinformation to whip up hate against bedbound people.
1228337
Reposted by Tom Parsons
Frances Ryan @francesryan.bsky.social · 03/08/2026
As Rod Liddle has died, I notice this column I wrote in 2019 about his attacks on people with M.E. is on the most read again. Rebekah Brooks, of News UK, described Liddle today as “provocative”. In reality, he spread lies about very sick people for cash. www.theguardian.com/commentisfre...
theguardian.com
Rod Liddle vilifies disabled people. I’m tired of the hate. We all should be | Frances Ryan
Whether it is ME patients or another target, huge swathes of the media have normalised hatred of minorities for years, says Guardian columnist Frances Ryan
691353414
Reposted by Tom Parsons
Frances Ryan @francesryan.bsky.social · 27/07/2026
Political challenge: if you’re not willing to spend a year without regularly getting dressed, showering, or leaving the house, you’re not allowed to lobby against every reasonable effort to fund social care reform.
212424