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
A court has ruled that the government's authoritarian ban on Palestine Action was unlawful.
Time to stop criminalising the people protesting a genocide - and start ending the UK's complicity.
Time to stop criminalising the people protesting a genocide - and start ending the UK's complicity.
February 13, 2026 at 10:22 AM
A court has ruled that the government's authoritarian ban on Palestine Action was unlawful.
Time to stop criminalising the people protesting a genocide - and start ending the UK's complicity.
Time to stop criminalising the people protesting a genocide - and start ending the UK's complicity.
Reposted by Tom Parsons
30 years later, the exact same argument was reproduced by Suzanne O‘Sullivan in her chapter on Long Covid in ‚The Age of Diagnosis‘, plucked out of thin air, for all I know: ok, some few people have real organic disease, but for the vast majority it’s psychosomatic. Yeah, right.
#LongCovid
#ME
#LongCovid
#ME
The Toronto Star. 11th February 1992.
Edward Shorter "...believes it's a waste of taxpayers' money to incessantly continue to give patients x-rays, blood tests, spinal taps or exploratory surgery if there is nothing wrong organically."
#mecfs #longcovid #lyme #cfsme
Edward Shorter "...believes it's a waste of taxpayers' money to incessantly continue to give patients x-rays, blood tests, spinal taps or exploratory surgery if there is nothing wrong organically."
#mecfs #longcovid #lyme #cfsme
February 11, 2026 at 9:51 AM
30 years later, the exact same argument was reproduced by Suzanne O‘Sullivan in her chapter on Long Covid in ‚The Age of Diagnosis‘, plucked out of thin air, for all I know: ok, some few people have real organic disease, but for the vast majority it’s psychosomatic. Yeah, right.
#LongCovid
#ME
#LongCovid
#ME
Reposted by Tom Parsons
every now and then i remember, dimly, that my first grade teacher tried to force me to stop being left handed. my mom and i used to get school supplies at a left-handed store. everyone i knew seemed to comment on me being left-handed.
that all stopped when I was 10-11, no one seems to care now
that all stopped when I was 10-11, no one seems to care now
February 10, 2026 at 8:45 AM
every now and then i remember, dimly, that my first grade teacher tried to force me to stop being left handed. my mom and i used to get school supplies at a left-handed store. everyone i knew seemed to comment on me being left-handed.
that all stopped when I was 10-11, no one seems to care now
that all stopped when I was 10-11, no one seems to care now
Reposted by Tom Parsons
An essential read.
So much about this has me furious and scared, but the frankly evil framing of James's needs as preferences is perhaps the worst.
Very severe patients are the most vulnerable. They and their exhausted carers deserve so much more than this.
So much about this has me furious and scared, but the frankly evil framing of James's needs as preferences is perhaps the worst.
Very severe patients are the most vulnerable. They and their exhausted carers deserve so much more than this.
February 10, 2026 at 9:34 AM
An essential read.
So much about this has me furious and scared, but the frankly evil framing of James's needs as preferences is perhaps the worst.
Very severe patients are the most vulnerable. They and their exhausted carers deserve so much more than this.
So much about this has me furious and scared, but the frankly evil framing of James's needs as preferences is perhaps the worst.
Very severe patients are the most vulnerable. They and their exhausted carers deserve so much more than this.
Reposted by Tom Parsons
In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding.
She explains why CHC funding for very severe ME is an issue that deserves attention.
🔗 in next post 👇
She explains why CHC funding for very severe ME is an issue that deserves attention.
🔗 in next post 👇
![A picture of a young woman and man together smiling (Karen and James). Overlaid on the picture: "When I first came across CHC funding it felt like the perfect fit [...] Their initial assessment concluded he was eligible. Yet, one year on both our CHC application and subsequent appeal have been rejected." Karen Hargrave. New #ThereForME Substack post.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:wjbaponwuqichcsh2fiwono5/bafkreifod7x7n4p4nd4i7wresiukfpxc4sb3rewzva7r63te4vpqpioo2m@jpeg)
February 10, 2026 at 9:19 AM
In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding.
She explains why CHC funding for very severe ME is an issue that deserves attention.
🔗 in next post 👇
She explains why CHC funding for very severe ME is an issue that deserves attention.
🔗 in next post 👇
I (severe pwME) have had people use that language with me and it makes me apoplectic. The idea that I would choose any of this, that any of us would, is so deeply offensive. Yet it seems like this is a very common way that our needs are framed.
Thank you for writing this article.
Thank you for writing this article.
February 10, 2026 at 6:49 PM
I (severe pwME) have had people use that language with me and it makes me apoplectic. The idea that I would choose any of this, that any of us would, is so deeply offensive. Yet it seems like this is a very common way that our needs are framed.
Thank you for writing this article.
Thank you for writing this article.
Reposted by Tom Parsons
February 10, 2026 at 10:37 AM
Reposted by Tom Parsons
@cfshealth
February 10, 2026 at 1:15 PM
@cfshealth
Reposted by Tom Parsons
Something compelled me to make this
February 10, 2026 at 10:57 AM
Something compelled me to make this
Reposted by Tom Parsons
Reposted by Tom Parsons
As Karen points out in her blog, the lack of (or extreme difficulty obtaining) CHC funding for people with very severe ME is another failure of the #MEDeliveryPlan.
The Plan simply does not mention it.
Astounding. 😖
The Plan simply does not mention it.
Astounding. 😖
February 10, 2026 at 3:21 PM
As Karen points out in her blog, the lack of (or extreme difficulty obtaining) CHC funding for people with very severe ME is another failure of the #MEDeliveryPlan.
The Plan simply does not mention it.
Astounding. 😖
The Plan simply does not mention it.
Astounding. 😖
Reposted by Tom Parsons
US-supplied internationally prohibited thermal & thermobaric munitions burning at 3,500C have left no trace of nearly 3,000 Palestinians, @aljazeera.com reveals. “We found nothing of Saad. Not even a body to bury. That was the hardest part,” says one mother. www.aljazeera.com/features/202...
Israel used weapons in Gaza that made thousands of Palestinians evaporate
US-made thermal weapons burning at 3,500C caused 2,842 people to "evaporate" in Gaza, Al Jazeera investigation finds.
www.aljazeera.com
February 10, 2026 at 4:11 PM
US-supplied internationally prohibited thermal & thermobaric munitions burning at 3,500C have left no trace of nearly 3,000 Palestinians, @aljazeera.com reveals. “We found nothing of Saad. Not even a body to bury. That was the hardest part,” says one mother. www.aljazeera.com/features/202...
Reposted by Tom Parsons
Ex GB News editorial director John McAndrew now the BBC Director of News Programmes
Robbie Gibb was an editorial advisor for GB News prior to its launch in 2021 & is now on the BBC board & a member of the BBC's editorial guidelines and standard committee
So Farage is their guy!
#BBC #Reform
Robbie Gibb was an editorial advisor for GB News prior to its launch in 2021 & is now on the BBC board & a member of the BBC's editorial guidelines and standard committee
So Farage is their guy!
#BBC #Reform
February 7, 2026 at 1:18 PM
Reposted by Tom Parsons
Necessary but not sufficient.
He knew. And still appointed him.
Starmer needs to go.
He knew. And still appointed him.
Starmer needs to go.
February 8, 2026 at 3:24 PM
Necessary but not sufficient.
He knew. And still appointed him.
Starmer needs to go.
He knew. And still appointed him.
Starmer needs to go.
Reposted by Tom Parsons
A new go fund me for Savannah has been set up to cover medical costs and ME-literate nursing support. I have just donated.
www.gofundme.com/f/severemerg...
www.gofundme.com/f/severemerg...
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
January 30, 2026 at 6:29 PM
A new go fund me for Savannah has been set up to cover medical costs and ME-literate nursing support. I have just donated.
www.gofundme.com/f/severemerg...
www.gofundme.com/f/severemerg...
Reposted by Tom Parsons
The right is always happy to weaponise mental health and disability. It just depends on the day whether they’re arguing you’re incapable because of it or you’re faking having it.
January 26, 2026 at 8:24 PM
The right is always happy to weaponise mental health and disability. It just depends on the day whether they’re arguing you’re incapable because of it or you’re faking having it.
Reposted by Tom Parsons
Good news from Norway 😀
More money has been now raised for a placebo-controlled trial of a promising drug for ME/CFS and the trial is continuing to recruit.
www.s4me.info/threads/norw...
Info in English on the trial & how to donate here
www.me-foreningen.no/om-oss/stott...
#MEcfs #PwME #CFS
More money has been now raised for a placebo-controlled trial of a promising drug for ME/CFS and the trial is continuing to recruit.
www.s4me.info/threads/norw...
Info in English on the trial & how to donate here
www.me-foreningen.no/om-oss/stott...
#MEcfs #PwME #CFS
January 20, 2026 at 2:24 PM
Good news from Norway 😀
More money has been now raised for a placebo-controlled trial of a promising drug for ME/CFS and the trial is continuing to recruit.
www.s4me.info/threads/norw...
Info in English on the trial & how to donate here
www.me-foreningen.no/om-oss/stott...
#MEcfs #PwME #CFS
More money has been now raised for a placebo-controlled trial of a promising drug for ME/CFS and the trial is continuing to recruit.
www.s4me.info/threads/norw...
Info in English on the trial & how to donate here
www.me-foreningen.no/om-oss/stott...
#MEcfs #PwME #CFS
Reposted by Tom Parsons
January 25, 2026 at 4:27 PM
Reposted by Tom Parsons
10/
“The ripple effect touches every facet of life. Relationships strain under the weight of the illness. Financial stability often collapses (contd).”
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #pwme
“The ripple effect touches every facet of life. Relationships strain under the weight of the illness. Financial stability often collapses (contd).”
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #pwme
December 23, 2025 at 9:19 PM
10/
“The ripple effect touches every facet of life. Relationships strain under the weight of the illness. Financial stability often collapses (contd).”
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #pwme
“The ripple effect touches every facet of life. Relationships strain under the weight of the illness. Financial stability often collapses (contd).”
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #pwme
Reposted by Tom Parsons
2/
“You might think you know what tired feels like. But this is different. Research suggests [ME/CFS] creates a wall. A brick wall. Even simple mental exertion or physical or mental activity hits you hard. It is called post exertional malaise. It feels like your battery is not just empty but broken”
“You might think you know what tired feels like. But this is different. Research suggests [ME/CFS] creates a wall. A brick wall. Even simple mental exertion or physical or mental activity hits you hard. It is called post exertional malaise. It feels like your battery is not just empty but broken”
December 23, 2025 at 3:46 PM
2/
“You might think you know what tired feels like. But this is different. Research suggests [ME/CFS] creates a wall. A brick wall. Even simple mental exertion or physical or mental activity hits you hard. It is called post exertional malaise. It feels like your battery is not just empty but broken”
“You might think you know what tired feels like. But this is different. Research suggests [ME/CFS] creates a wall. A brick wall. Even simple mental exertion or physical or mental activity hits you hard. It is called post exertional malaise. It feels like your battery is not just empty but broken”
Reposted by Tom Parsons
Remember when every leader wanted their picture taken with Greta? She is still that truth teller, they just can't face the truth of their crimes.
Greta Thunberg arrested for holding a sign opposing genocide.
When peaceful protest is a crime, democracy is in deep trouble.
Happening under a Labour Government.
When peaceful protest is a crime, democracy is in deep trouble.
Happening under a Labour Government.
🚨BREAKING: GRETA THUNBERG ARRESTED UNDER TERRORISM ACT FOR SUPPORTING 'PALESTINE ACTION PRISONERS'
December 23, 2025 at 6:33 PM
Remember when every leader wanted their picture taken with Greta? She is still that truth teller, they just can't face the truth of their crimes.
I've never seen it 😱
December 22, 2025 at 8:11 PM
I've never seen it 😱
Reposted by Tom Parsons
March 31, 2020:
December 22, 2025 at 12:42 AM
March 31, 2020:
Reposted by Tom Parsons
"People do not have to get repeatedly sick just because their kids attend daycare or school or take a school bus.”
👏🏼 👏🏼 👏🏼
ottawa.citynews.ca/2025/12/21/s...
👏🏼 👏🏼 👏🏼
ottawa.citynews.ca/2025/12/21/s...
Schools have become cesspools for cold and flu, but they don't have to be: Ontario School Safety
The volunteer organization Ontario School Safety is calling on the provincial government to improve air quality in schools as flu spreads.
ottawa.citynews.ca
December 22, 2025 at 1:00 PM
"People do not have to get repeatedly sick just because their kids attend daycare or school or take a school bus.”
👏🏼 👏🏼 👏🏼
ottawa.citynews.ca/2025/12/21/s...
👏🏼 👏🏼 👏🏼
ottawa.citynews.ca/2025/12/21/s...