@janinthegarden.bsky.social
Mother to son with severe ME/cfs.
Pandemic isn't over, wear a good respirator.
Gardening is my solace.
Pandemic isn't over, wear a good respirator.
Gardening is my solace.
Reposted
September 1, 2026 at 12:44 PM
Reposted
I've added my name to the open letter calling for a public inquiry into the tragic death of Professor Jason Arday. Will you join me?
goodlaw.social/625453
goodlaw.social/625453
Jason Arday: Demand a public inquiry now | Good Law Project
Commission an immediate public inquiry into how to ensure a responsible press given its contribution to Dr Arday’s tragic death.
goodlaw.social
August 18, 2026 at 8:49 PM
I've added my name to the open letter calling for a public inquiry into the tragic death of Professor Jason Arday. Will you join me?
goodlaw.social/625453
goodlaw.social/625453
Reposted
I've added my name to the open letter calling for a public inquiry into the tragic death of Professor Jason Arday. Will you join me?
goodlaw.social/625453
goodlaw.social/625453
Jason Arday: Demand a public inquiry now | Good Law Project
Commission an immediate public inquiry into how to ensure a responsible press given its contribution to Dr Arday’s tragic death.
goodlaw.social
August 18, 2026 at 3:34 PM
I've added my name to the open letter calling for a public inquiry into the tragic death of Professor Jason Arday. Will you join me?
goodlaw.social/625453
goodlaw.social/625453
Reposted
It’s a rip-off price, the vendor is toxic, and it seems the software doesnt deliver: www.ft.com/content/cbd1... Palantir tool has not cut hospital discharge delays, study says
Palantir tool has not cut hospital discharge delays, study says
Think-tank’s findings likely to add to calls for audit of NHS England claims around Federated Data Platform
www.ft.com
July 27, 2026 at 5:55 AM
It’s a rip-off price, the vendor is toxic, and it seems the software doesnt deliver: www.ft.com/content/cbd1... Palantir tool has not cut hospital discharge delays, study says
Reposted
“5 years after the introduction of NICE guideline NG206 [for #MECFS], little has changed. Service provision according to NG206 remains patchy and poor, with many patients having traumatic experiences”
Helen Morgan MP, UK Parliament
Helen Morgan MP, UK Parliament
July 11, 2026 at 7:54 AM
“5 years after the introduction of NICE guideline NG206 [for #MECFS], little has changed. Service provision according to NG206 remains patchy and poor, with many patients having traumatic experiences”
Helen Morgan MP, UK Parliament
Helen Morgan MP, UK Parliament
Reposted
#MECFS is a “medical” and a “social catastrophe.”
— Jörg Heydecke, founder of Germany’s ME/CFS Research Foundation.
One patient waited 19 years for a diagnosis. Another said she was told her symptoms were psychological and that she needed to get on with it.
— Jörg Heydecke, founder of Germany’s ME/CFS Research Foundation.
One patient waited 19 years for a diagnosis. Another said she was told her symptoms were psychological and that she needed to get on with it.
June 1, 2026 at 6:45 AM
#MECFS is a “medical” and a “social catastrophe.”
— Jörg Heydecke, founder of Germany’s ME/CFS Research Foundation.
One patient waited 19 years for a diagnosis. Another said she was told her symptoms were psychological and that she needed to get on with it.
— Jörg Heydecke, founder of Germany’s ME/CFS Research Foundation.
One patient waited 19 years for a diagnosis. Another said she was told her symptoms were psychological and that she needed to get on with it.
Reposted
Two more drownings today in UK. One in my home city of Oxford. Both youngsters.
Slate have (I'm told) kindly removed the paywall on this article.
Slate have (I'm told) kindly removed the paywall on this article.
Every summer I repost this article on how to spot drowning. Please read it and pass on. In the last few years I’ve had SIX messages from people who saved a kid’s life after clicking on the link from my feed.
slate.com/technology/2...
slate.com/technology/2...
Drowning Doesn’t Look Like Drowning
Drowning is not the violent, splashing call for help that most people expect.
slate.com
May 28, 2026 at 5:39 PM
Two more drownings today in UK. One in my home city of Oxford. Both youngsters.
Slate have (I'm told) kindly removed the paywall on this article.
Slate have (I'm told) kindly removed the paywall on this article.
Reposted
“They’ve had their lives completely demolished by this illness.”
Millions are living with #LongCovid while society has moved on.
Former Team GB rower @oonaghcousins.bsky.social developed #MECFS following Covid and had to retire.
Millions are living with #LongCovid while society has moved on.
Former Team GB rower @oonaghcousins.bsky.social developed #MECFS following Covid and had to retire.
May 25, 2026 at 3:27 PM
“They’ve had their lives completely demolished by this illness.”
Millions are living with #LongCovid while society has moved on.
Former Team GB rower @oonaghcousins.bsky.social developed #MECFS following Covid and had to retire.
Millions are living with #LongCovid while society has moved on.
Former Team GB rower @oonaghcousins.bsky.social developed #MECFS following Covid and had to retire.
Reposted
“They sometimes aren’t supported by their families. They almost always aren’t supported any longer by their friends.”
Caroline Kingdon, on the profound isolation experienced by people with severe #MECFS.
Caroline Kingdon, on the profound isolation experienced by people with severe #MECFS.
May 19, 2026 at 8:29 AM
“They sometimes aren’t supported by their families. They almost always aren’t supported any longer by their friends.”
Caroline Kingdon, on the profound isolation experienced by people with severe #MECFS.
Caroline Kingdon, on the profound isolation experienced by people with severe #MECFS.
Reposted
Great news. Thanks to @cgatist.bsky.social and the #DecodeME team and the government for the funding. With the hope of more funding to come.
(£) www.thetimes.com/uk/healthcar...
#MEcfs #LongCovid
(£) www.thetimes.com/uk/healthcar...
#MEcfs #LongCovid
Landmark ME study will map patients’ DNA in mission to find cure
The government will provide £4.75 million in funding to British scientists who aim to create a test to reliably identify chronic fatigue syndrome
www.thetimes.com
May 12, 2026 at 10:35 AM
Great news. Thanks to @cgatist.bsky.social and the #DecodeME team and the government for the funding. With the hope of more funding to come.
(£) www.thetimes.com/uk/healthcar...
#MEcfs #LongCovid
(£) www.thetimes.com/uk/healthcar...
#MEcfs #LongCovid
Reposted
Today is #MEAwarenessDay
ME/CFS is often described as neglected and under-researched. That ignores the true history. George Monbiot and Carol Monaghan have described it as one of the greatest medical scandals of the 21st century.
ME/CFS is often described as neglected and under-researched. That ignores the true history. George Monbiot and Carol Monaghan have described it as one of the greatest medical scandals of the 21st century.
May 12, 2026 at 8:23 AM
Today is #MEAwarenessDay
ME/CFS is often described as neglected and under-researched. That ignores the true history. George Monbiot and Carol Monaghan have described it as one of the greatest medical scandals of the 21st century.
ME/CFS is often described as neglected and under-researched. That ignores the true history. George Monbiot and Carol Monaghan have described it as one of the greatest medical scandals of the 21st century.
Reposted
DecodeME has received £4.75M in UK government funding to sequence 6,000 DNA samples. This is phase 2 of a wider project, to sequence 9,000 #MECFS samples and 9,000 #LongCovid samples.
Full article in The Times:
archive.ph/2026.05.11-2...
Full article in The Times:
archive.ph/2026.05.11-2...
archive.ph
May 12, 2026 at 5:43 AM
DecodeME has received £4.75M in UK government funding to sequence 6,000 DNA samples. This is phase 2 of a wider project, to sequence 9,000 #MECFS samples and 9,000 #LongCovid samples.
Full article in The Times:
archive.ph/2026.05.11-2...
Full article in The Times:
archive.ph/2026.05.11-2...
Please help David get over the final hurdle in his last fund raising day! crowdfund.berkeley.edu/project/49720
Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc
Help UC Berkeley raise $75,000 for the project: Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc. Your gift will make a difference!
crowdfund.berkeley.edu
May 8, 2026 at 7:10 AM
Please help David get over the final hurdle in his last fund raising day! crowdfund.berkeley.edu/project/49720
Reposted
Thanks, @jenniejacques1.bsky.social!!
ME Awareness
@davetuller1.bsky.social has spent years fighting for scientific integrity & exposing misinformation surrounding ME.
Independent voices matter. So does truth in medicine. @georgemonbiot.bsky.social
DONATE here 🔻
crowdfund.berkeley.edu/project/4972...
@davetuller1.bsky.social has spent years fighting for scientific integrity & exposing misinformation surrounding ME.
Independent voices matter. So does truth in medicine. @georgemonbiot.bsky.social
DONATE here 🔻
crowdfund.berkeley.edu/project/4972...
May 7, 2026 at 7:45 PM
Thanks, @jenniejacques1.bsky.social!!
Reposted
Psychiatry has caused a lot of delays and damage in the field of #MECFS. A lot of work needs to be done to undo harm from theories such as patients excessively resting, being afraid to exercise, or perpetuating their illness.
Dr Nina Muirhead, interview in The Times (2020)
Dr Nina Muirhead, interview in The Times (2020)
May 2, 2026 at 10:26 AM
Psychiatry has caused a lot of delays and damage in the field of #MECFS. A lot of work needs to be done to undo harm from theories such as patients excessively resting, being afraid to exercise, or perpetuating their illness.
Dr Nina Muirhead, interview in The Times (2020)
Dr Nina Muirhead, interview in The Times (2020)
Reposted
As George Monbiot says in this clip @davetuller1.bsky.social’s work was “absolutely crucial” in helping him understand the problems with #MEcfs research when writing his seminal article.
I’ve just donated to David’s crowdfunding campaign to help keep his work going.
I’ve just donated to David’s crowdfunding campaign to help keep his work going.
April 22, 2026 at 10:54 AM
As George Monbiot says in this clip @davetuller1.bsky.social’s work was “absolutely crucial” in helping him understand the problems with #MEcfs research when writing his seminal article.
I’ve just donated to David’s crowdfunding campaign to help keep his work going.
I’ve just donated to David’s crowdfunding campaign to help keep his work going.
Reposted
Professor Chris Ponting on the 116 blood molecule differences his team found in people with #MECFS
“This is not a psychological disease” people did not alter their blood molecules just to “spook the psychiatrists”.
Clip from Hope 4 ME & Fibro NI 2026
“This is not a psychological disease” people did not alter their blood molecules just to “spook the psychiatrists”.
Clip from Hope 4 ME & Fibro NI 2026
April 11, 2026 at 9:18 AM
Professor Chris Ponting on the 116 blood molecule differences his team found in people with #MECFS
“This is not a psychological disease” people did not alter their blood molecules just to “spook the psychiatrists”.
Clip from Hope 4 ME & Fibro NI 2026
“This is not a psychological disease” people did not alter their blood molecules just to “spook the psychiatrists”.
Clip from Hope 4 ME & Fibro NI 2026
Reposted
Dr William Weir on how the influence of Simon Wessely and his colleagues created an overriding tendency among doctors to insist that #MECFS is a psychological disorder.
Clip from Hope 4 ME & Fibro NI Collaboration for Change 2026
Clip from Hope 4 ME & Fibro NI Collaboration for Change 2026
April 10, 2026 at 3:07 PM
Dr William Weir on how the influence of Simon Wessely and his colleagues created an overriding tendency among doctors to insist that #MECFS is a psychological disorder.
Clip from Hope 4 ME & Fibro NI Collaboration for Change 2026
Clip from Hope 4 ME & Fibro NI Collaboration for Change 2026
Reposted
#MECFS patients and advocates not only had to fight flawed research and harmful treatments, they also had to deal with attempts to discredit them, like a PACE author calling an MP “unbecoming” and accusing MPs of defamation and libellous comments for scrutinising his work.
April 9, 2026 at 8:53 AM
#MECFS patients and advocates not only had to fight flawed research and harmful treatments, they also had to deal with attempts to discredit them, like a PACE author calling an MP “unbecoming” and accusing MPs of defamation and libellous comments for scrutinising his work.
Reposted
“the overall conclusion is that the scale of deaths in the first wave could have been much lower and the devastating second wave could have been largely avoided. Tens of thousands of deaths could have been prevented.” 😬
Prof Christina Pagel @chrischirp.bsky.social 's commentary on the latest Covid Inquiry report
christinapagel.substack.com/p/the-uk-cov...
christinapagel.substack.com/p/the-uk-cov...
The UK Covid Inquiry has laid bare the avoidable horror of the second Covid wave
It is becoming ever clearer both how devastating the second wave of winter 2020/21 was, and how much of that devastation could have been avoided.
christinapagel.substack.com
March 27, 2026 at 10:43 AM
“the overall conclusion is that the scale of deaths in the first wave could have been much lower and the devastating second wave could have been largely avoided. Tens of thousands of deaths could have been prevented.” 😬
Reposted
From Prof Christina Pagel's excellent substack:
"The overall conclusion is that the scale of deaths in the first wave could have been much lower and the devastating second wave could have been largely avoided."
christinapagel.subst...
1/13
"The overall conclusion is that the scale of deaths in the first wave could have been much lower and the devastating second wave could have been largely avoided."
christinapagel.subst...
1/13
The UK Covid Inquiry has laid bare the avoidable horror of the second Covid wave
It is becoming ever clearer both how devastating the second wave of winter 2020/21 was, and how much of that devastation could have been avoided.
christinapagel.substack.com
March 27, 2026 at 2:04 PM
From Prof Christina Pagel's excellent substack:
"The overall conclusion is that the scale of deaths in the first wave could have been much lower and the devastating second wave could have been largely avoided."
christinapagel.subst...
1/13
"The overall conclusion is that the scale of deaths in the first wave could have been much lower and the devastating second wave could have been largely avoided."
christinapagel.subst...
1/13
Reposted
Thank you @johnthejack.bsky.social 💙💙💙🙏🏻💙💙💙🫂💙💙💙
March 26, 2026 at 9:39 PM
Thank you @johnthejack.bsky.social 💙💙💙🙏🏻💙💙💙🫂💙💙💙
Reposted
Covid has led to an increase in #MECFS. In Germany, numbers have gone from ~250,000 to over 600,000 since the start of the pandemic.
It’s been around for decades, yet many patients still aren’t believed and are given harmful advice by doctors, as one patient reports.
It’s been around for decades, yet many patients still aren’t believed and are given harmful advice by doctors, as one patient reports.
March 23, 2026 at 9:49 AM
Covid has led to an increase in #MECFS. In Germany, numbers have gone from ~250,000 to over 600,000 since the start of the pandemic.
It’s been around for decades, yet many patients still aren’t believed and are given harmful advice by doctors, as one patient reports.
It’s been around for decades, yet many patients still aren’t believed and are given harmful advice by doctors, as one patient reports.
Reposted
🎯
"This is a life and death story for the UK – so why is it being brushed under the carpet?"
Healthy Life Expectancy at Birth Plummeting. 📉
It is a hideous scandal that they can publish a chart as obvious as this and not even mention the words 'covid infections'.
Healthy Life Expectancy at Birth Plummeting. 📉
It is a hideous scandal that they can publish a chart as obvious as this and not even mention the words 'covid infections'.
March 6, 2026 at 8:48 AM
🎯
Reposted
Kelly: "You could pick a random group of people off the street tonight here in DC and they could probably do a better job than our government is doing right now. They don't have a goal, there's no strategic plan. And what this is likely to lead to is, again, a long war with a lot of dead Americans."
March 5, 2026 at 2:26 AM
Kelly: "You could pick a random group of people off the street tonight here in DC and they could probably do a better job than our government is doing right now. They don't have a goal, there's no strategic plan. And what this is likely to lead to is, again, a long war with a lot of dead Americans."