Adam
@abrokenbattery.bsky.social
Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
https://linktr.ee/abrokenbattery
https://linktr.ee/abrokenbattery
TW: Euthanasia
Clip from a NOS news report about Marjon Lindeboom who became severely ill with long COVID. Includes powerful interview with her daughter Kirsten talking about her mother’s isolation, deterioration and the fight to be seen and believed.
Clip from a NOS news report about Marjon Lindeboom who became severely ill with long COVID. Includes powerful interview with her daughter Kirsten talking about her mother’s isolation, deterioration and the fight to be seen and believed.
December 3, 2025 at 9:17 AM
TW: Euthanasia
Clip from a NOS news report about Marjon Lindeboom who became severely ill with long COVID. Includes powerful interview with her daughter Kirsten talking about her mother’s isolation, deterioration and the fight to be seen and believed.
Clip from a NOS news report about Marjon Lindeboom who became severely ill with long COVID. Includes powerful interview with her daughter Kirsten talking about her mother’s isolation, deterioration and the fight to be seen and believed.
Clip from an NOS news report about the PAIS protest in The Hague. Wheelchairs symbolised those too ill to attend. Patients with post-infectious illnesses: long COVID, ME/CFS, Lyme, Q-fever and sepsis are calling for proper research and treatment.
December 2, 2025 at 1:30 PM
Clip from an NOS news report about the PAIS protest in The Hague. Wheelchairs symbolised those too ill to attend. Patients with post-infectious illnesses: long COVID, ME/CFS, Lyme, Q-fever and sepsis are calling for proper research and treatment.
Clip from The Conditional Release Program podcast, with Jack the Insider (Peter Hoysted) Simon Wessely was Nominated for the Bent Spoon Award (the annual prize for pseudoscience at SkeptiCon). Wessely wasn’t eligible though because he’s not Australian.
November 30, 2025 at 9:24 AM
Clip from The Conditional Release Program podcast, with Jack the Insider (Peter Hoysted) Simon Wessely was Nominated for the Bent Spoon Award (the annual prize for pseudoscience at SkeptiCon). Wessely wasn’t eligible though because he’s not Australian.
Clip from a 2011 news segment about 22-year-old Ben DePasquale, who became severely ill with #MECFS at 18. Doctors thought he maybe depressed and suggested exercise which only made him worse. “He is sick of the medical community seemingly not paying attention.”
November 29, 2025 at 8:06 AM
Clip from a 2011 news segment about 22-year-old Ben DePasquale, who became severely ill with #MECFS at 18. Doctors thought he maybe depressed and suggested exercise which only made him worse. “He is sick of the medical community seemingly not paying attention.”
Clip: BBC Look North 10-year-old Asa has been named Young Person of the Year by SENSE. Asa supports his mum with daily tasks at home after they became disabled with ME/CFS after Covid-19.
November 26, 2025 at 8:11 PM
Clip: BBC Look North 10-year-old Asa has been named Young Person of the Year by SENSE. Asa supports his mum with daily tasks at home after they became disabled with ME/CFS after Covid-19.
Full BBC Inside Out segment about Claire Wade bedbound with severe ME for 6 years (8 mins)
youtu.be/cPH3kKkEYAI?...
BBC description
www.bbc.co.uk/insideout/ea...
youtu.be/cPH3kKkEYAI?...
BBC description
www.bbc.co.uk/insideout/ea...
November 26, 2025 at 7:01 AM
Full BBC Inside Out segment about Claire Wade bedbound with severe ME for 6 years (8 mins)
youtu.be/cPH3kKkEYAI?...
BBC description
www.bbc.co.uk/insideout/ea...
youtu.be/cPH3kKkEYAI?...
BBC description
www.bbc.co.uk/insideout/ea...
Highlights from a 2006 BBC Inside Out segment about 20 yr old Claire Wade, bedbound with severe ME. She fell ill at 10 and lost her entire teenage years to the illness. She spent the last 6 yrs confined to bed, with only letters & emails to connect her to the outside world.
November 26, 2025 at 7:00 AM
Highlights from a 2006 BBC Inside Out segment about 20 yr old Claire Wade, bedbound with severe ME. She fell ill at 10 and lost her entire teenage years to the illness. She spent the last 6 yrs confined to bed, with only letters & emails to connect her to the outside world.
Clip: @oonaghcousins.bsky.social explains how post-exertional malaise has affected her. It’s not tiredness after exercise, simple tasks like preparing food or even talking would cause her whole body would go into shutdown, affecting her nervous, immune, digestive systems and more.
November 22, 2025 at 6:15 PM
Clip: @oonaghcousins.bsky.social explains how post-exertional malaise has affected her. It’s not tiredness after exercise, simple tasks like preparing food or even talking would cause her whole body would go into shutdown, affecting her nervous, immune, digestive systems and more.
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.
New from the The Sick Times
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise
‘Testing exercise is “money down the drain” and won’t advance understanding of Long COVID, experts say’
thesicktimes.org/2025/11/21/l...
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise
‘Testing exercise is “money down the drain” and won’t advance understanding of Long COVID, experts say’
thesicktimes.org/2025/11/21/l...
November 21, 2025 at 5:54 PM
New from the The Sick Times
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise
‘Testing exercise is “money down the drain” and won’t advance understanding of Long COVID, experts say’
thesicktimes.org/2025/11/21/l...
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise
‘Testing exercise is “money down the drain” and won’t advance understanding of Long COVID, experts say’
thesicktimes.org/2025/11/21/l...
BBC Points West ran a very short 20-second clip on yesterday’s Westminster debate. Local MP Tessa Munt called for greater NHS support and investment for people with #MECFS. Unfortunately the segment used “extreme tiredness” to describe the main symptom.
November 21, 2025 at 5:00 PM
BBC Points West ran a very short 20-second clip on yesterday’s Westminster debate. Local MP Tessa Munt called for greater NHS support and investment for people with #MECFS. Unfortunately the segment used “extreme tiredness” to describe the main symptom.
Alison Hume MP shares an account of severe #MECFS and warns that many healthcare professionals lack understanding of severe ME — especially its hallmark symptom, post, exertional malaise PEM — and that patients are too often pushed into pathways that simply aren’t appropriate.
November 21, 2025 at 12:28 PM
Alison Hume MP shares an account of severe #MECFS and warns that many healthcare professionals lack understanding of severe ME — especially its hallmark symptom, post, exertional malaise PEM — and that patients are too often pushed into pathways that simply aren’t appropriate.
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.
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?
Tessa Munt MP warns that two preventable death reports in just over a year highlight the dangers facing people with severe #MECFS. She spoke to @BinitaKane.bsky.social, who described a 25yr old student and multiple missed opportunities to stop her decline. This is not an isolated case.
November 20, 2025 at 4:49 PM
Tessa Munt MP warns that two preventable death reports in just over a year highlight the dangers facing people with severe #MECFS. She spoke to @BinitaKane.bsky.social, who described a 25yr old student and multiple missed opportunities to stop her decline. This is not an isolated case.
Tessa Munt MP: “ME is perhaps the only condition where the sicker you become, the less care you receive from the NHS.” NHS care for severe ME is nonexistent, over 200 healthcare workers were so concerned they wrote to the Health Secretary 14 months ago but received no response.
November 20, 2025 at 11:51 AM
Tessa Munt MP: “ME is perhaps the only condition where the sicker you become, the less care you receive from the NHS.” NHS care for severe ME is nonexistent, over 200 healthcare workers were so concerned they wrote to the Health Secretary 14 months ago but received no response.
Tessa Munt MP highlights how Germany is taking post-infectious diseases seriously, committing €500m over 10 years to research #MECFS & #LongCOVID. She asks if the UK Government will make a comparable commitment, or wait a decade for the Germans’ conclusions before taking action?
November 20, 2025 at 7:04 AM
Tessa Munt MP highlights how Germany is taking post-infectious diseases seriously, committing €500m over 10 years to research #MECFS & #LongCOVID. She asks if the UK Government will make a comparable commitment, or wait a decade for the Germans’ conclusions before taking action?
Tessa Munt MP highlights the economic impact of ME: based on a 2014–15 estimate, adjusted for inflation and increased case numbers, ME is estimated to cost the UK around £7 billion a year — rising to ~£20 billion including people who meet the criteria for ME with long COVID
November 19, 2025 at 8:51 PM
Tessa Munt MP highlights the economic impact of ME: based on a 2014–15 estimate, adjusted for inflation and increased case numbers, ME is estimated to cost the UK around £7 billion a year — rising to ~£20 billion including people who meet the criteria for ME with long COVID
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.
Clip from January 2022, @mark_bonnar appeared on Celebrity Catchphrase supporting @actionforme. He explained that he backs the charity because #MECFS is very misunderstood, very underfunded and affects several people he knows personally.
November 16, 2025 at 11:29 AM
Clip from January 2022, @mark_bonnar appeared on Celebrity Catchphrase supporting @actionforme. He explained that he backs the charity because #MECFS is very misunderstood, very underfunded and affects several people he knows personally.
Here is a photo in case you didn’t see it of the meeting
November 6, 2025 at 3:06 PM
Here is a photo in case you didn’t see it of the meeting
This may be helpful
“Back in 1995 a Unum report on CFS stated that they could "lose millions if we do not move quickly to address this increasing problem".
In the Expectation of Recovery, George Faulkner 2016.
citizen-network.org/uploads/atta...
“Back in 1995 a Unum report on CFS stated that they could "lose millions if we do not move quickly to address this increasing problem".
In the Expectation of Recovery, George Faulkner 2016.
citizen-network.org/uploads/atta...
November 6, 2025 at 12:40 PM
This may be helpful
“Back in 1995 a Unum report on CFS stated that they could "lose millions if we do not move quickly to address this increasing problem".
In the Expectation of Recovery, George Faulkner 2016.
citizen-network.org/uploads/atta...
“Back in 1995 a Unum report on CFS stated that they could "lose millions if we do not move quickly to address this increasing problem".
In the Expectation of Recovery, George Faulkner 2016.
citizen-network.org/uploads/atta...
This clip from 2018 perfectly captures just how passionate @davetuller1.bsky.social is and how shocked he was by the way the PACE trial was defended.
His crowd funding has just 1 day to go and he’s ~$10k from his target. I’ve just donated again so he can carry on doing his important work
His crowd funding has just 1 day to go and he’s ~$10k from his target. I’ve just donated again so he can carry on doing his important work
November 6, 2025 at 10:15 AM
This clip from 2018 perfectly captures just how passionate @davetuller1.bsky.social is and how shocked he was by the way the PACE trial was defended.
His crowd funding has just 1 day to go and he’s ~$10k from his target. I’ve just donated again so he can carry on doing his important work
His crowd funding has just 1 day to go and he’s ~$10k from his target. I’ve just donated again so he can carry on doing his important work
‘If you’re disabled, you’re not ill.’
Sir Charlie Mayfield (author of the Keep Britain Working review)
This is who’s shaping UK disability employment policy. Shocking, he doesn’t even understand the basics.
I’m disabled because I’m chronically ill with #MECFS.
Sir Charlie Mayfield (author of the Keep Britain Working review)
This is who’s shaping UK disability employment policy. Shocking, he doesn’t even understand the basics.
I’m disabled because I’m chronically ill with #MECFS.
November 6, 2025 at 9:35 AM
‘If you’re disabled, you’re not ill.’
Sir Charlie Mayfield (author of the Keep Britain Working review)
This is who’s shaping UK disability employment policy. Shocking, he doesn’t even understand the basics.
I’m disabled because I’m chronically ill with #MECFS.
Sir Charlie Mayfield (author of the Keep Britain Working review)
This is who’s shaping UK disability employment policy. Shocking, he doesn’t even understand the basics.
I’m disabled because I’m chronically ill with #MECFS.
Clip from @davetuller1.bsky.social’s interview with Professor @bmhughes.bsky.social about his new book, Psychology’s Quiet Conservatism. He explains how the psychogenic framing of illnesses like #MECFS and #LongCovid has shaped care and policy, often as a way to cut costs.
November 5, 2025 at 7:59 AM
Clip from @davetuller1.bsky.social’s interview with Professor @bmhughes.bsky.social about his new book, Psychology’s Quiet Conservatism. He explains how the psychogenic framing of illnesses like #MECFS and #LongCovid has shaped care and policy, often as a way to cut costs.