Something Chronic
@somethingchronic.bsky.social
Mostly bedbound by severe #ME/CFS #POTS #EDS #MCAS + more. Chronically hopeful for better days. Determined to fight against injustice so people with ME + Long Covid are treated with the same belief, respect + kindness as any other serious physical illness
Pinned
Will ‘reframing my beliefs’ cure the muscle atrophy that #severeME has caused? Will it help me get downstairs in my home again after 2 years? Will it help Karen Gordon & @whitneydafoe.bsky.social? Why ignore 1000s of studies with irrefutable evidence #MECFS is physiological? @tessamunt.bsky.social
Reposted by Something Chronic
Labour's anti-asylum policies are already fundamentally inhumane and discriminatory. Applying them retrospectively is pure cruelty though. It serves absolutely no purpose. Meanwhile it will increase the costs and bureaucracy of an already dysfunctional Home Office.
www.thetimes.com/article/6f83...
www.thetimes.com/article/6f83...
November 24, 2025 at 3:17 PM
Labour's anti-asylum policies are already fundamentally inhumane and discriminatory. Applying them retrospectively is pure cruelty though. It serves absolutely no purpose. Meanwhile it will increase the costs and bureaucracy of an already dysfunctional Home Office.
www.thetimes.com/article/6f83...
www.thetimes.com/article/6f83...
Reposted by Something Chronic
The rationale behind these studies, Seltzer contests, is [that] “it presumes that the patient had never heard of exercise until a doctor told them [it] exists.”
Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
“People who are performing these studies are extraordinarily ignorant, and their ignorance is dangerous,” said @exceedhergrasp1.bsky.social. She and other experts agree these trials are a waste of $$ and will not advance our biological understanding of Long COVID. thesicktimes.org/2025/11/21/l...
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise - The Sick Times
An analysis by The Sick Times find that less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to th...
thesicktimes.org
November 21, 2025 at 3:56 PM
The rationale behind these studies, Seltzer contests, is [that] “it presumes that the patient had never heard of exercise until a doctor told them [it] exists.”
Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
Reposted by Something Chronic
The first feature-length documentary on ME/CFS & #LongCOVID, “What Doesn’t Kill You…” is crowd-funding.
I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time
www.youtube.com/watch?v=y1rS...
#MEcfs
1/
I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time
www.youtube.com/watch?v=y1rS...
#MEcfs
1/
The First Feature-Length Documentary on ME/CFS and Long COVID (Now Crowdfunding)
YouTube video by What Doesn't Kill You
www.youtube.com
November 22, 2025 at 12:01 AM
The first feature-length documentary on ME/CFS & #LongCOVID, “What Doesn’t Kill You…” is crowd-funding.
I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time
www.youtube.com/watch?v=y1rS...
#MEcfs
1/
I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time
www.youtube.com/watch?v=y1rS...
#MEcfs
1/
Reposted by Something Chronic
Clip: Julie Heath shares the impact of becoming a carer for her husband and two children with #MECFS, and how she’s become their advocate because they don’t have the energy to do things like speak to their GP. ME/CFS doesn’t just affect individuals it affects whole families.
November 22, 2025 at 11:23 AM
Clip: Julie Heath shares the impact of becoming a carer for her husband and two children with #MECFS, and how she’s become their advocate because they don’t have the energy to do things like speak to their GP. ME/CFS doesn’t just affect individuals it affects whole families.
Reposted by Something Chronic
bingo. Rose has hit the nail on the head!!!!
My hot take if you post and pimp and promote alt text but not mask up for us at the VERY least at healthcare facility.
You are still a rampant abelist
99.9% of ya can handle wearing one when in a HC facility ...
My hot take if you post and pimp and promote alt text but not mask up for us at the VERY least at healthcare facility.
You are still a rampant abelist
99.9% of ya can handle wearing one when in a HC facility ...
February 27, 2025 at 10:38 PM
bingo. Rose has hit the nail on the head!!!!
My hot take if you post and pimp and promote alt text but not mask up for us at the VERY least at healthcare facility.
You are still a rampant abelist
99.9% of ya can handle wearing one when in a HC facility ...
My hot take if you post and pimp and promote alt text but not mask up for us at the VERY least at healthcare facility.
You are still a rampant abelist
99.9% of ya can handle wearing one when in a HC facility ...
Reposted by Something Chronic
US press release:
"Underlying cause of Gulf War illness confirmed in UTSW study"
"Dysfunctional mitochondria, organelles that serve as cellular power generators, appear to cause the symptoms of Gulf War illness ( #GWI )"
www.newswise.com/articles/und...
Full paper:
www.nature.com/articles/s41...
"Underlying cause of Gulf War illness confirmed in UTSW study"
"Dysfunctional mitochondria, organelles that serve as cellular power generators, appear to cause the symptoms of Gulf War illness ( #GWI )"
www.newswise.com/articles/und...
Full paper:
www.nature.com/articles/s41...
November 22, 2025 at 4:28 PM
US press release:
"Underlying cause of Gulf War illness confirmed in UTSW study"
"Dysfunctional mitochondria, organelles that serve as cellular power generators, appear to cause the symptoms of Gulf War illness ( #GWI )"
www.newswise.com/articles/und...
Full paper:
www.nature.com/articles/s41...
"Underlying cause of Gulf War illness confirmed in UTSW study"
"Dysfunctional mitochondria, organelles that serve as cellular power generators, appear to cause the symptoms of Gulf War illness ( #GWI )"
www.newswise.com/articles/und...
Full paper:
www.nature.com/articles/s41...
Reposted by Something Chronic
In case anyone else needs this today: the best advice I ever read about #MECFS was “no one else is going to lie in that bed for you.” The decisions, fragile routine, the totally altered perspective on life— they don’t have to make sense to anyone else, bc they don’t have to live w/ the consequences.
April 4, 2025 at 5:25 PM
In case anyone else needs this today: the best advice I ever read about #MECFS was “no one else is going to lie in that bed for you.” The decisions, fragile routine, the totally altered perspective on life— they don’t have to make sense to anyone else, bc they don’t have to live w/ the consequences.
Reposted by Something Chronic
2/
Donation link for “What Doesn’t Kill You”:
gofundme.com/f/the-first-...
#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
Donation link for “What Doesn’t Kill You”:
gofundme.com/f/the-first-...
#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
November 22, 2025 at 12:06 AM
2/
Donation link for “What Doesn’t Kill You”:
gofundme.com/f/the-first-...
#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
Donation link for “What Doesn’t Kill You”:
gofundme.com/f/the-first-...
#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
Reposted by Something Chronic
Autopsies of 18 foetuses showed that "SARS-CoV-2 can be widely distributed in fetal organs through vertical transmission". In addition immune and DNA damage were found in the infected organs
www.nature.com/articles/s41...
www.nature.com/articles/s41...
Presence of SARS-CoV-2 in fetal organs via intraamniotic infection - Nature Communications
Infection with SARS-CoV-2 during pregnancy may result in maternal and fetal complications. Here, the authors analyze 18 fetuses following maternal SARS-CoV-2 infection and identify distribution in fet...
www.nature.com
November 22, 2025 at 1:12 AM
Autopsies of 18 foetuses showed that "SARS-CoV-2 can be widely distributed in fetal organs through vertical transmission". In addition immune and DNA damage were found in the infected organs
www.nature.com/articles/s41...
www.nature.com/articles/s41...
5) Disability support:
People with severe ME/CFS also express "overwhelming concern over their financial insecurity and uncertain future. Receiving disability assistance becomes a matter of survival."
People with severe ME/CFS also express "overwhelming concern over their financial insecurity and uncertain future. Receiving disability assistance becomes a matter of survival."
November 22, 2025 at 9:31 PM
Reposted by Something Chronic
1) New sociology paper on severe ME/CFS. The authors analyzed 342 messages on Twitter/X to get insights into the daily reality of people with severe ME/CFS.
They highlight the feeling of being trapped by the illness, profound isolation and longing for the outside world.
They highlight the feeling of being trapped by the illness, profound isolation and longing for the outside world.
November 22, 2025 at 8:39 AM
1) New sociology paper on severe ME/CFS. The authors analyzed 342 messages on Twitter/X to get insights into the daily reality of people with severe ME/CFS.
They highlight the feeling of being trapped by the illness, profound isolation and longing for the outside world.
They highlight the feeling of being trapped by the illness, profound isolation and longing for the outside world.
Reposted by Something Chronic
Reposted by Something Chronic
A former acquaintance of mine - also an Old Etonian - who had never expressed a political sentiment in the ten years I'd known him said much those same words to me ca 2001.
He viewed it as "something to do" because he didn't really have to work like the rest of us.
He viewed it as "something to do" because he didn't really have to work like the rest of us.
I'll never forget the line from Cameron where he ( reportedly ) said he wanted to be PM because he thought he'd be
"quite good at it"
Quite how we prevent this unwarranted entitlement is beyond me.
"quite good at it"
Quite how we prevent this unwarranted entitlement is beyond me.
November 22, 2025 at 9:51 AM
A former acquaintance of mine - also an Old Etonian - who had never expressed a political sentiment in the ten years I'd known him said much those same words to me ca 2001.
He viewed it as "something to do" because he didn't really have to work like the rest of us.
He viewed it as "something to do" because he didn't really have to work like the rest of us.
Reposted by Something Chronic
Sometimes I forget that normies don’t understand the “possible permanent decline” part. Yes, getting sick after basic tasks is terrible enough. But we want to LIVE. If we could assuredly recover we’d do ALL THE THINGS, get sick, recover & repeat. That alone would be life-changing. #MECFS #LongCovid
People with #MECFS, and many with #LongCOVID experience post-exertional malaise: a flare of symptoms after activity. The response is disproportionate to the activity and can lead to permanent drops in functional capacity.
www.mayoclinicproceedings.org/article/s0025-6196(23)00402-0/fulltext
www.mayoclinicproceedings.org/article/s0025-6196(23)00402-0/fulltext
Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic
disease often preceded by infection. There has been increased interest in ME/CFS recently
because of its significant...
www.mayoclinicproceedings.org
November 21, 2025 at 4:31 PM
Sometimes I forget that normies don’t understand the “possible permanent decline” part. Yes, getting sick after basic tasks is terrible enough. But we want to LIVE. If we could assuredly recover we’d do ALL THE THINGS, get sick, recover & repeat. That alone would be life-changing. #MECFS #LongCovid
Reposted by Something Chronic
🔴The Government Has Cut Air Pollution Funds to Councils by 99% as Illegal Levels of Pollution Shorten Lives
New data shows just £1.5 million was given to councils in England in the past year to tackle air pollution – down from a high of £225 million in 2021
bylinetimes.com/2025/11/21/t...
New data shows just £1.5 million was given to councils in England in the past year to tackle air pollution – down from a high of £225 million in 2021
bylinetimes.com/2025/11/21/t...
The Government Has Cut Air Pollution Funds to Councils by 99% as Illegal Levels of Pollution Shorten Lives
New data shows just £1.5 million was given to councils in England in the past year to tackle air pollution - down from a high of £225 million in 2021
bylinetimes.com
November 21, 2025 at 10:43 AM
🔴The Government Has Cut Air Pollution Funds to Councils by 99% as Illegal Levels of Pollution Shorten Lives
New data shows just £1.5 million was given to councils in England in the past year to tackle air pollution – down from a high of £225 million in 2021
bylinetimes.com/2025/11/21/t...
New data shows just £1.5 million was given to councils in England in the past year to tackle air pollution – down from a high of £225 million in 2021
bylinetimes.com/2025/11/21/t...
Reposted by Something Chronic
Post-exertional malaise is the cardinal symptom of #ME.
In people with #severeME, even chewing food can trigger post-exertional malaise.
#UKMAW2025
#EndMalnutritionInME
In people with #severeME, even chewing food can trigger post-exertional malaise.
#UKMAW2025
#EndMalnutritionInME
November 18, 2025 at 7:10 PM
Post-exertional malaise is the cardinal symptom of #ME.
In people with #severeME, even chewing food can trigger post-exertional malaise.
#UKMAW2025
#EndMalnutritionInME
In people with #severeME, even chewing food can trigger post-exertional malaise.
#UKMAW2025
#EndMalnutritionInME
Reposted by Something Chronic
Worth remembering as this unfolds that it was disabled people and people from ethnic minority backgrounds who disproportionately died. Tens of thousands needlessly lost their lives, many who died alone or with just an iPad. Thousands more were left with life changing Long Covid. A true scandal.
BREAKING: The UK’s response to Covid was “too little, too late”, a damning official report on the handling of the pandemic has concluded, saying the introduction of a lockdown even a week earlier than happened could have saved more than 20,000 lives.
November 20, 2025 at 4:17 PM
Worth remembering as this unfolds that it was disabled people and people from ethnic minority backgrounds who disproportionately died. Tens of thousands needlessly lost their lives, many who died alone or with just an iPad. Thousands more were left with life changing Long Covid. A true scandal.
Reposted by Something Chronic
It's not "less" though. NHS provision is positively harmful for #pwME (unless you are a psych patient wrongly diagnosed) because there is 0 patient safety advice in:
NG206;
every UK ME org;
NHS e-Learning;
ME specialist docs in Harley Street;
DHSC FDP.
Patient safety in ME costs £0
NG206;
every UK ME org;
NHS e-Learning;
ME specialist docs in Harley Street;
DHSC FDP.
Patient safety in ME costs £0
November 20, 2025 at 11:29 PM
It's not "less" though. NHS provision is positively harmful for #pwME (unless you are a psych patient wrongly diagnosed) because there is 0 patient safety advice in:
NG206;
every UK ME org;
NHS e-Learning;
ME specialist docs in Harley Street;
DHSC FDP.
Patient safety in ME costs £0
NG206;
every UK ME org;
NHS e-Learning;
ME specialist docs in Harley Street;
DHSC FDP.
Patient safety in ME costs £0
Yes. MPs referred to ‘stigma’ but when will someone call the BPSM what IT IS?
The BPS model is careerist-psychiatrists with a ridiculous belief in ‘infectious ideas’ calling seriously ill people malingerers+continuing to do that for decades IN THE FACE OF CONFOUNDING EVIDENCE AND ONGOING DEATHS
The BPS model is careerist-psychiatrists with a ridiculous belief in ‘infectious ideas’ calling seriously ill people malingerers+continuing to do that for decades IN THE FACE OF CONFOUNDING EVIDENCE AND ONGOING DEATHS
November 21, 2025 at 1:57 PM
Reposted by Something Chronic
Yes agree. For many I know, the more NHS clinic ‘guidance’ you get, the sicker you get. Even for Mild and Moderate.
I avoid contact as far as possible whilst there’s nothing worth visiting for.
I avoid contact as far as possible whilst there’s nothing worth visiting for.
November 20, 2025 at 11:41 PM
Yes agree. For many I know, the more NHS clinic ‘guidance’ you get, the sicker you get. Even for Mild and Moderate.
I avoid contact as far as possible whilst there’s nothing worth visiting for.
I avoid contact as far as possible whilst there’s nothing worth visiting for.
Reposted by Something Chronic
Word of the day is ‘quockerwodger’ (19th century): a puppet politician whose strings are pulled entirely by someone else.
November 21, 2025 at 1:21 PM
Word of the day is ‘quockerwodger’ (19th century): a puppet politician whose strings are pulled entirely by someone else.
Reposted by Something Chronic
This exchange between Hancock and Johnson on 7th March 2020 speaks volumes about that government’s pandemic leadership.
Hancock: This is a clarion call for you to lead.
Johnson: Ok, I’m off to the rugby.
Hancock: This is a clarion call for you to lead.
Johnson: Ok, I’m off to the rugby.
November 20, 2025 at 7:24 AM
This exchange between Hancock and Johnson on 7th March 2020 speaks volumes about that government’s pandemic leadership.
Hancock: This is a clarion call for you to lead.
Johnson: Ok, I’m off to the rugby.
Hancock: This is a clarion call for you to lead.
Johnson: Ok, I’m off to the rugby.
Reposted by Something Chronic
Clip - Tessa Munt MP opens the #MECFS debate, noting ~400,000 have ME in the UK, & the total could be much higher including people with with long COVID. She highlights decades of substandard, sometimes harmful care, pitiful funding, and the outdated view of ME as psychiatric.
November 19, 2025 at 7:01 PM
Clip - Tessa Munt MP opens the #MECFS debate, noting ~400,000 have ME in the UK, & the total could be much higher including people with with long COVID. She highlights decades of substandard, sometimes harmful care, pitiful funding, and the outdated view of ME as psychiatric.
Reposted by Something Chronic
Tessa Munt MP calls for urgent action to accelerate #MECFS research. The UK has spent just £10 million over 12 years — about 60p per patient/year. Four times more went on a helicopter for a former PM, 12 times more on a bat tunnel for HS2. Why isn’t ME a strategic research priority?
November 20, 2025 at 9:09 PM
Tessa Munt MP calls for urgent action to accelerate #MECFS research. The UK has spent just £10 million over 12 years — about 60p per patient/year. Four times more went on a helicopter for a former PM, 12 times more on a bat tunnel for HS2. Why isn’t ME a strategic research priority?
Reposted by Something Chronic
Highlights — JoPlattMP.bsky.social MP developed #MECFS after #LongCOVID and says these are among the most devastating yet neglected illnesses of our time. She calls for research to match Germany’s €500m pledge & for a severe ME service, with patients dying from nutritional failure.
November 21, 2025 at 6:50 AM
Highlights — JoPlattMP.bsky.social MP developed #MECFS after #LongCOVID and says these are among the most devastating yet neglected illnesses of our time. She calls for research to match Germany’s €500m pledge & for a severe ME service, with patients dying from nutritional failure.