Pinned
Tom Parsons
@tomparsons.bsky.social
· Feb 25
I'm Tom.
I used to be a writer and a musician.
Now I am 95% bedbound and struggle to compose a few paragraphs or strum a simple chord progression.
I used to have mild #ME/CFS, but my functioning became much worse after being told to exercise and keep pushing myself to do more by clinicians.
I used to be a writer and a musician.
Now I am 95% bedbound and struggle to compose a few paragraphs or strum a simple chord progression.
I used to have mild #ME/CFS, but my functioning became much worse after being told to exercise and keep pushing myself to do more by clinicians.
Reposted by Tom Parsons
9-year anniversary of reanalysis paper on recovery in £5m #PACEtrial, with data the PACE team fought so hard to keep to themselves.
Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol
tandfonline.com/doi/full/10....
#MEcfs #CFS
Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol
tandfonline.com/doi/full/10....
#MEcfs #CFS
December 14, 2025 at 1:54 PM
9-year anniversary of reanalysis paper on recovery in £5m #PACEtrial, with data the PACE team fought so hard to keep to themselves.
Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol
tandfonline.com/doi/full/10....
#MEcfs #CFS
Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol
tandfonline.com/doi/full/10....
#MEcfs #CFS
Reposted by Tom Parsons
2) Interferon is one of the signalling proteins our immune system makes to respond to viruses. It's used as medicine for MS and hepatitis C where it causes extreme malaise and fatigue as a side effect. For this reason, it has always been of interest in conditions such as ME/CFS.
December 14, 2025 at 10:55 AM
2) Interferon is one of the signalling proteins our immune system makes to respond to viruses. It's used as medicine for MS and hepatitis C where it causes extreme malaise and fatigue as a side effect. For this reason, it has always been of interest in conditions such as ME/CFS.
Reposted by Tom Parsons
1) This interesting short paper showed that the immune cells of Long Covid patients had a stronger response to viral mimics than controls. They produced more type I interferon.
December 14, 2025 at 10:55 AM
1) This interesting short paper showed that the immune cells of Long Covid patients had a stronger response to viral mimics than controls. They produced more type I interferon.
Reposted by Tom Parsons
Nick Clegg says asking artists for use permission would ‘kill’ the AI industry
Nick Clegg says asking artists for use permission would ‘kill’ the AI industry
Paul McCartne, Elton John and others signed an open letter.
buff.ly
May 26, 2025 at 1:40 PM
Nick Clegg says asking artists for use permission would ‘kill’ the AI industry
Reposted by Tom Parsons
1) Oliver Sacks, the neurologist known for his detailed case studies, seems to have fabricated and lied in many of his publications.
This includes famous books such as 'The Man Who Mistook His Wife for a Hat' and 'Awakenings' on patients with encephalitis lethargica.
This includes famous books such as 'The Man Who Mistook His Wife for a Hat' and 'Awakenings' on patients with encephalitis lethargica.
December 13, 2025 at 8:50 AM
1) Oliver Sacks, the neurologist known for his detailed case studies, seems to have fabricated and lied in many of his publications.
This includes famous books such as 'The Man Who Mistook His Wife for a Hat' and 'Awakenings' on patients with encephalitis lethargica.
This includes famous books such as 'The Man Who Mistook His Wife for a Hat' and 'Awakenings' on patients with encephalitis lethargica.
Reposted by Tom Parsons
And then there’s the story about Alex Karp’s not-at-all-weird interview (for lack of a better word) with Oswald Mosley’s grandson for a senior position at Palantir.
December 13, 2025 at 1:41 AM
And then there’s the story about Alex Karp’s not-at-all-weird interview (for lack of a better word) with Oswald Mosley’s grandson for a senior position at Palantir.
Reposted by Tom Parsons
Absolutely ridiculous that you felt you had to resign when so many nasty, twisted people flourish at a much higher level in the BBC.
December 13, 2025 at 12:12 AM
Absolutely ridiculous that you felt you had to resign when so many nasty, twisted people flourish at a much higher level in the BBC.
Reposted by Tom Parsons
Very sad that I felt I had no choice but to resign from The Infinite Monkey Cage - a victory for the transphobes and other bigots - I did it because so much of the media has chosen to believe the kind and empathetic people are a fiction - they are real and so often unrepresented.
December 13, 2025 at 12:02 AM
Very sad that I felt I had no choice but to resign from The Infinite Monkey Cage - a victory for the transphobes and other bigots - I did it because so much of the media has chosen to believe the kind and empathetic people are a fiction - they are real and so often unrepresented.
Reposted by Tom Parsons
This will happen to people more and more and lead to terrible things
googled something and clicked a link to a website I'd never heard of that looked like a forum, read the discussion and realized the person asking a question and all of the answers were all LLM generated, the entire website was a fake forum pretending to be people asking/answering questions
December 12, 2025 at 7:36 AM
This will happen to people more and more and lead to terrible things
Reposted by Tom Parsons
So, to those who say "masks don't work", cite the flawed Cochrane report, insist upon an unfeasible RCT, accuse folks of panic, and undermine public health on social and mainstream media during a flu/RSV epidemic...
1. Seasonal viruses may be "normal", but they do immense harm.
1. Seasonal viruses may be "normal", but they do immense harm.
December 12, 2025 at 11:07 AM
So, to those who say "masks don't work", cite the flawed Cochrane report, insist upon an unfeasible RCT, accuse folks of panic, and undermine public health on social and mainstream media during a flu/RSV epidemic...
1. Seasonal viruses may be "normal", but they do immense harm.
1. Seasonal viruses may be "normal", but they do immense harm.
Reposted by Tom Parsons
I supported the access to MAID, and extending it to those with non-terminal illnesses—because I believed there would be strong guardrails.
I was utterly wrong. It’s quickly become a way to save the government money so there’s no incentive to provide strong oversight.
I was utterly wrong. It’s quickly become a way to save the government money so there’s no incentive to provide strong oversight.
December 12, 2025 at 11:30 AM
I supported the access to MAID, and extending it to those with non-terminal illnesses—because I believed there would be strong guardrails.
I was utterly wrong. It’s quickly become a way to save the government money so there’s no incentive to provide strong oversight.
I was utterly wrong. It’s quickly become a way to save the government money so there’s no incentive to provide strong oversight.
Reposted by Tom Parsons
I erroneously believed that HCWs weren’t permitted to proactively suggest MAiD. I assumed the patient had to make the request.
I went home and researched and sure enough - they are actually encouraged to bring it up.
Not only in terminal patients - but in those with disabilities as well /4
I went home and researched and sure enough - they are actually encouraged to bring it up.
Not only in terminal patients - but in those with disabilities as well /4
December 3, 2024 at 9:10 PM
I erroneously believed that HCWs weren’t permitted to proactively suggest MAiD. I assumed the patient had to make the request.
I went home and researched and sure enough - they are actually encouraged to bring it up.
Not only in terminal patients - but in those with disabilities as well /4
I went home and researched and sure enough - they are actually encouraged to bring it up.
Not only in terminal patients - but in those with disabilities as well /4
Reposted by Tom Parsons
The wait time for a consult was over a year - and I pointed out I didn’t think I could last a year given I was only 90lbs
The reply? MAiD can be arranged in 3 months if the wait times are unacceptable
I was so shocked & appalled that I lodged a complaint - only to be told they did nothing wrong /3
The reply? MAiD can be arranged in 3 months if the wait times are unacceptable
I was so shocked & appalled that I lodged a complaint - only to be told they did nothing wrong /3
December 3, 2024 at 9:10 PM
The wait time for a consult was over a year - and I pointed out I didn’t think I could last a year given I was only 90lbs
The reply? MAiD can be arranged in 3 months if the wait times are unacceptable
I was so shocked & appalled that I lodged a complaint - only to be told they did nothing wrong /3
The reply? MAiD can be arranged in 3 months if the wait times are unacceptable
I was so shocked & appalled that I lodged a complaint - only to be told they did nothing wrong /3
Reposted by Tom Parsons
I was severely malnourished - something that often occurs in patients with EDS and/or MCAS. No matter how hard I tried - I couldn’t keep food down.
I had lost a tremendous amount of weight and my albumin was so low that my legs were filled with fluid and “weeping” /2
I had lost a tremendous amount of weight and my albumin was so low that my legs were filled with fluid and “weeping” /2
December 3, 2024 at 9:10 PM
I was severely malnourished - something that often occurs in patients with EDS and/or MCAS. No matter how hard I tried - I couldn’t keep food down.
I had lost a tremendous amount of weight and my albumin was so low that my legs were filled with fluid and “weeping” /2
I had lost a tremendous amount of weight and my albumin was so low that my legs were filled with fluid and “weeping” /2
Reposted by Tom Parsons
I’m a disabled person living in Canada. My conditions are incurable - but there ARE treatments. I would be considered a “high cost health user” because I’m medically complex.
The first time a doctor brought up assisted dying - it was in response to my requesting an expedited GI consult /1 🧵
The first time a doctor brought up assisted dying - it was in response to my requesting an expedited GI consult /1 🧵
December 3, 2024 at 9:10 PM
I’m a disabled person living in Canada. My conditions are incurable - but there ARE treatments. I would be considered a “high cost health user” because I’m medically complex.
The first time a doctor brought up assisted dying - it was in response to my requesting an expedited GI consult /1 🧵
The first time a doctor brought up assisted dying - it was in response to my requesting an expedited GI consult /1 🧵
Reposted by Tom Parsons
Instead the UK dug into cultural masculinity that denied airborne transmission & collective responsibility. The toughness of presenteeism still dominates.
This was and is driven by media nationalism. We know pandemics push societies to the right to avoid accountability & cost. /12
This was and is driven by media nationalism. We know pandemics push societies to the right to avoid accountability & cost. /12
December 11, 2025 at 9:56 AM
Instead the UK dug into cultural masculinity that denied airborne transmission & collective responsibility. The toughness of presenteeism still dominates.
This was and is driven by media nationalism. We know pandemics push societies to the right to avoid accountability & cost. /12
This was and is driven by media nationalism. We know pandemics push societies to the right to avoid accountability & cost. /12
Reposted by Tom Parsons
😷 Masks aren't traumatising.
Abandonment is.
Airborne denial is.
Hospital-acquired infection is.
Long Covid and severe ME is.
The most traumatising part of the ongoing pandemic and current flu surge is the refusal to care. /14
Abandonment is.
Airborne denial is.
Hospital-acquired infection is.
Long Covid and severe ME is.
The most traumatising part of the ongoing pandemic and current flu surge is the refusal to care. /14
December 11, 2025 at 9:56 AM
😷 Masks aren't traumatising.
Abandonment is.
Airborne denial is.
Hospital-acquired infection is.
Long Covid and severe ME is.
The most traumatising part of the ongoing pandemic and current flu surge is the refusal to care. /14
Abandonment is.
Airborne denial is.
Hospital-acquired infection is.
Long Covid and severe ME is.
The most traumatising part of the ongoing pandemic and current flu surge is the refusal to care. /14
Reposted by Tom Parsons
😷The real scandal isn’t masks - it’s how many people need them and are denied cultural permission to use them without ridicule.
It shows a culture deeply rooted in ableism. Disabled people had reinforced (again) that adaptions are not normalised, they are stigmatised. /13
It shows a culture deeply rooted in ableism. Disabled people had reinforced (again) that adaptions are not normalised, they are stigmatised. /13
December 11, 2025 at 9:56 AM
😷The real scandal isn’t masks - it’s how many people need them and are denied cultural permission to use them without ridicule.
It shows a culture deeply rooted in ableism. Disabled people had reinforced (again) that adaptions are not normalised, they are stigmatised. /13
It shows a culture deeply rooted in ableism. Disabled people had reinforced (again) that adaptions are not normalised, they are stigmatised. /13
Reposted by Tom Parsons
It’s such a mindfuck to see articles & TV shows trying to sensitively reflect on the ongoing COVID pandemic—but doing so only in the past tense, or as if it were a horrible event that ended in 2022 & is all behind us now & we just need to deal with the psychological after effects. It ain’t over.
In 2025, TV finally reflected the lingering effects of living through COVID-19
In 2025, TV finally reflected the lingering effects of living through COVID-19
www.avclub.com
December 10, 2025 at 5:40 PM
It’s such a mindfuck to see articles & TV shows trying to sensitively reflect on the ongoing COVID pandemic—but doing so only in the past tense, or as if it were a horrible event that ended in 2022 & is all behind us now & we just need to deal with the psychological after effects. It ain’t over.
Reposted by Tom Parsons
#pwME #LongCovid UK 'flu epidemic is here. Get your visitors to mask up. Subsidise them with your own supplies if necessary.
NHS is clueless on immunocompromisation in "post" viral conditions.
Pls share widely.
NHS is clueless on immunocompromisation in "post" viral conditions.
Pls share widely.
December 9, 2025 at 9:55 PM
#pwME #LongCovid UK 'flu epidemic is here. Get your visitors to mask up. Subsidise them with your own supplies if necessary.
NHS is clueless on immunocompromisation in "post" viral conditions.
Pls share widely.
NHS is clueless on immunocompromisation in "post" viral conditions.
Pls share widely.
Reposted by Tom Parsons
I really appreciate Davenport et al pushing back.
They’re responding to a proposed protocol that will purposefully mislead #LongCovid patients about the aims of the study👇
Source: bmjopen.bmj.com/content/15/1...
#MECFS #PEM
1/
They’re responding to a proposed protocol that will purposefully mislead #LongCovid patients about the aims of the study👇
Source: bmjopen.bmj.com/content/15/1...
#MECFS #PEM
1/
December 10, 2025 at 4:37 AM
I really appreciate Davenport et al pushing back.
They’re responding to a proposed protocol that will purposefully mislead #LongCovid patients about the aims of the study👇
Source: bmjopen.bmj.com/content/15/1...
#MECFS #PEM
1/
They’re responding to a proposed protocol that will purposefully mislead #LongCovid patients about the aims of the study👇
Source: bmjopen.bmj.com/content/15/1...
#MECFS #PEM
1/
Reposted by Tom Parsons
UK press release
£1.1m awarded to investigate links between ME/CFS and Long Covid
www.imperial.ac.uk/news/article...
Well done to @meassociation.org.uk & its supporters for raising the money for this @daltmann.bsky.social study which involves "stool, blood and saliva samples"
#MEcfs #LongCovid
£1.1m awarded to investigate links between ME/CFS and Long Covid
www.imperial.ac.uk/news/article...
Well done to @meassociation.org.uk & its supporters for raising the money for this @daltmann.bsky.social study which involves "stool, blood and saliva samples"
#MEcfs #LongCovid
December 10, 2025 at 2:58 PM
UK press release
£1.1m awarded to investigate links between ME/CFS and Long Covid
www.imperial.ac.uk/news/article...
Well done to @meassociation.org.uk & its supporters for raising the money for this @daltmann.bsky.social study which involves "stool, blood and saliva samples"
#MEcfs #LongCovid
£1.1m awarded to investigate links between ME/CFS and Long Covid
www.imperial.ac.uk/news/article...
Well done to @meassociation.org.uk & its supporters for raising the money for this @daltmann.bsky.social study which involves "stool, blood and saliva samples"
#MEcfs #LongCovid
Reposted by Tom Parsons
The petition states: "We ask for your signature to show how important this research is for millions of people who live with ME/CFS. By signing this petition you support scientific progress greater awareness and continued funding for a study that has the potential to change lives"
December 10, 2025 at 12:14 PM
The petition states: "We ask for your signature to show how important this research is for millions of people who live with ME/CFS. By signing this petition you support scientific progress greater awareness and continued funding for a study that has the potential to change lives"
Reposted by Tom Parsons
🇳🇴 Patients from Norway have created a petition to encourage the government to provide funding for the Daratumumab study and to strengthen future biomedical research efforts in ME CFS.
You can sign the petition here:
You can sign the petition here:
Sign the Petition
Call for Funding a New Clinical Study on Daratumumab for ME/CFS
www.change.org
December 10, 2025 at 12:14 PM
🇳🇴 Patients from Norway have created a petition to encourage the government to provide funding for the Daratumumab study and to strengthen future biomedical research efforts in ME CFS.
You can sign the petition here:
You can sign the petition here:
Reposted by Tom Parsons
All of global politics is really just to distract us from this horrible fact
This is obscene.
That others in politics can’t or won’t say that this is obscene hits at the heart of the problems we face.
We are the 99.999%.
Tax the super rich.
Join.greenparty.org.uk
That others in politics can’t or won’t say that this is obscene hits at the heart of the problems we face.
We are the 99.999%.
Tax the super rich.
Join.greenparty.org.uk
December 10, 2025 at 11:27 AM
All of global politics is really just to distract us from this horrible fact