Reposted by Alex
Five years after Covid, and given the early predictions about long-term illness, it’s astonishing that a major UK study comparing ME/CFS and Long Covid is only being done now and has to rely on charity. This type of work should have been funded by the government from the start.
December 10, 2025 at 12:29 PM
Five years after Covid, and given the early predictions about long-term illness, it’s astonishing that a major UK study comparing ME/CFS and Long Covid is only being done now and has to rely on charity. This type of work should have been funded by the government from the start.
Reposted by Alex
After some hardcore protesting in Germany!! Well done‼️‼️🇩🇪🇩🇪
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
(S+) Ex-Gesundheitsminister Lauterbach: Forschung gegen ME/CFS wird ausgeweitet
Union und SPD wollen mehr Geld in die Erforschung postinfektiöser Erkrankungen wie Long Covid stecken. Deutschland könne damit zum weltweiten Vorreiter werden, sagt Ex-Gesundheitsminister Lauterbach.
www.spiegel.de
November 13, 2025 at 11:18 PM
After some hardcore protesting in Germany!! Well done‼️‼️🇩🇪🇩🇪
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
Reposted by Alex
Berkeley's fall crowdfunder for Trial By Error is now up!
crowdfund.berkeley.edu/project/47768
crowdfund.berkeley.edu/project/47768
David Tuller's Trial by Error Fall 2025
Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Fall 2025. Your gift will make a difference!
crowdfund.berkeley.edu
October 7, 2025 at 5:18 PM
Berkeley's fall crowdfunder for Trial By Error is now up!
crowdfund.berkeley.edu/project/47768
crowdfund.berkeley.edu/project/47768
Reposted by Alex
Community Symposium on the Molecular Basis of ME/CFS returns Sept 5 on zoom! 8am-1pm PST Attendance limited to 5,000. Registration required and can’t be shared. Registration link: stanford.zoom.us/webinar/regist…
See photo below:
See photo below:
August 14, 2025 at 5:30 AM
Community Symposium on the Molecular Basis of ME/CFS returns Sept 5 on zoom! 8am-1pm PST Attendance limited to 5,000. Registration required and can’t be shared. Registration link: stanford.zoom.us/webinar/regist…
See photo below:
See photo below:
Reposted by Alex
Full Article - The Times
As my daughter died of ME, the state met in secret to blame me
Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27
archive.ph/2025.08.09-2...
As my daughter died of ME, the state met in secret to blame me
Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27
archive.ph/2025.08.09-2...
August 10, 2025 at 7:10 AM
Full Article - The Times
As my daughter died of ME, the state met in secret to blame me
Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27
archive.ph/2025.08.09-2...
As my daughter died of ME, the state met in secret to blame me
Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27
archive.ph/2025.08.09-2...
Reposted by Alex
Natasha Devon’s LBC phone-in on #MECFS (38 mins).
Callers discuss their experience, including stigma and medical gaslighting, as well as their thoughts on the largest genetic study to date. @natashadevon.bsky.social
youtu.be/-2XxcsUXRJs?...
Callers discuss their experience, including stigma and medical gaslighting, as well as their thoughts on the largest genetic study to date. @natashadevon.bsky.social
youtu.be/-2XxcsUXRJs?...
LBC - Natasha Devon Phone In - DecodeME Results
YouTube video by Broken Battery
youtu.be
August 9, 2025 at 7:36 PM
Natasha Devon’s LBC phone-in on #MECFS (38 mins).
Callers discuss their experience, including stigma and medical gaslighting, as well as their thoughts on the largest genetic study to date. @natashadevon.bsky.social
youtu.be/-2XxcsUXRJs?...
Callers discuss their experience, including stigma and medical gaslighting, as well as their thoughts on the largest genetic study to date. @natashadevon.bsky.social
youtu.be/-2XxcsUXRJs?...
Reposted by Alex
Clip: Channel 4 News, Prof Chris Ponting tells a participant that the DecodeME study found eight genetic differences in people with MECFS — demonstrating that it’s a biological, organic illness.
August 6, 2025 at 6:35 PM
Clip: Channel 4 News, Prof Chris Ponting tells a participant that the DecodeME study found eight genetic differences in people with MECFS — demonstrating that it’s a biological, organic illness.
Reposted by Alex
In case you missed it, the government is now overruling the outcome of local referendums in Bristol and Sheffield, imposing its opinion on how local councils should work, directly against the democratically expressed will of those communities themselves.
The government wants to impose a system of local government EVERYWHERE.
But what of communities - like Sheffield & Bristol - that don't want this?
#democracy - it would be a good idea
@bristolgreenparty.bsky.social @sheffgreenparty.bsky.social @local.gov.uk
But what of communities - like Sheffield & Bristol - that don't want this?
#democracy - it would be a good idea
@bristolgreenparty.bsky.social @sheffgreenparty.bsky.social @local.gov.uk
July 8, 2025 at 7:21 AM
In case you missed it, the government is now overruling the outcome of local referendums in Bristol and Sheffield, imposing its opinion on how local councils should work, directly against the democratically expressed will of those communities themselves.
Reposted by Alex
I’m sorry, the DWP announcing “don’t worry, the benefits u-turn means only 150,000 people will be pushed into poverty now!” is just insane. Cruel, incompetent ghouls who shouldn’t be allowed to run a bath let alone a system sick people rely on to live.
June 30, 2025 at 11:35 AM
I’m sorry, the DWP announcing “don’t worry, the benefits u-turn means only 150,000 people will be pushed into poverty now!” is just insane. Cruel, incompetent ghouls who shouldn’t be allowed to run a bath let alone a system sick people rely on to live.
Reposted by Alex
This is shocking. The Government's own impact assessment of the latest welfare changes shows 150,000 adults are still expected to fall into relative poverty by the end of 2029-30
Are Labour MPs seriously going to vote to do that?
Are Labour MPs seriously going to vote to do that?
June 30, 2025 at 11:47 AM
This is shocking. The Government's own impact assessment of the latest welfare changes shows 150,000 adults are still expected to fall into relative poverty by the end of 2029-30
Are Labour MPs seriously going to vote to do that?
Are Labour MPs seriously going to vote to do that?
Reposted by Alex
I thought I would repost this to highlight again some of the many varied symptoms that can be found in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome
Particularly relevant when similarities with the #LongCovid presentation in some people are being missed
#MEcfs #CFS #PwLC
1/
Particularly relevant when similarities with the #LongCovid presentation in some people are being missed
#MEcfs #CFS #PwLC
1/
May 22, 2025 at 9:46 PM
I thought I would repost this to highlight again some of the many varied symptoms that can be found in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome
Particularly relevant when similarities with the #LongCovid presentation in some people are being missed
#MEcfs #CFS #PwLC
1/
Particularly relevant when similarities with the #LongCovid presentation in some people are being missed
#MEcfs #CFS #PwLC
1/
Reposted by Alex
LDN has been being used for POTS and ME/CFS (two common components of Long COVID), but it can be difficult to access.
Griffith University: 'Drug typically used for opioid addiction could be long COVID treatment'
'Low-dose naltrexone has been identified as a potential treatment for Long COVID after a Griffith University study, published in Frontiers in Molecular Biosciences..'
medicalxpress.com/news/2025-05...
'Low-dose naltrexone has been identified as a potential treatment for Long COVID after a Griffith University study, published in Frontiers in Molecular Biosciences..'
medicalxpress.com/news/2025-05...
Drug typically used for opioid addiction could be long COVID treatment
Low-dose naltrexone (LDN) has been identified as a potential treatment for Long COVID after a Griffith University study, published in Frontiers in Molecular Biosciences, found it restored cellular fun...
medicalxpress.com
May 21, 2025 at 2:01 AM
LDN has been being used for POTS and ME/CFS (two common components of Long COVID), but it can be difficult to access.
Reposted by Alex
I missed #MEAwarenessDay yesterday, but great to see
@zackpolanski.bsky.social talking about this issue.
Millions of people live with ME yet next to nothing is being done to fund dedicated support and research into it.
As the overlap between long-covid and ME becomes clearer, action is needed now.
@zackpolanski.bsky.social talking about this issue.
Millions of people live with ME yet next to nothing is being done to fund dedicated support and research into it.
As the overlap between long-covid and ME becomes clearer, action is needed now.
May 13, 2025 at 1:59 PM
I missed #MEAwarenessDay yesterday, but great to see
@zackpolanski.bsky.social talking about this issue.
Millions of people live with ME yet next to nothing is being done to fund dedicated support and research into it.
As the overlap between long-covid and ME becomes clearer, action is needed now.
@zackpolanski.bsky.social talking about this issue.
Millions of people live with ME yet next to nothing is being done to fund dedicated support and research into it.
As the overlap between long-covid and ME becomes clearer, action is needed now.
Reposted by Alex
What a great job @thesicktimes.bsky.social did covering the #MillionsMissing protest at Washington DC yesterday!
Quoted: me, Laurie Jones, Shaina Coleman, David Burke
Lots of wonderful photos.
Check it out and please do share!
thesicktimes.org/2025/05/12/m...
Quoted: me, Laurie Jones, Shaina Coleman, David Burke
Lots of wonderful photos.
Check it out and please do share!
thesicktimes.org/2025/05/12/m...
“Millions Missing” protest at the Capitol demands myalgic encephalomyelitis funding, social support - The Sick Times
Myalgic encephalomyelitis (ME), Long COVID, and other chronic disease advocates demonstrated outside the Capitol Building in Washington, D.C., this afternoon. Organized by the advocacy group #MEAction...
thesicktimes.org
May 13, 2025 at 12:40 PM
What a great job @thesicktimes.bsky.social did covering the #MillionsMissing protest at Washington DC yesterday!
Quoted: me, Laurie Jones, Shaina Coleman, David Burke
Lots of wonderful photos.
Check it out and please do share!
thesicktimes.org/2025/05/12/m...
Quoted: me, Laurie Jones, Shaina Coleman, David Burke
Lots of wonderful photos.
Check it out and please do share!
thesicktimes.org/2025/05/12/m...
Reposted by Alex
Every single person with #ME or #longcovid deserves better. Better care, better recognition, better research, a better life. Please read this statement and, if possible, pass it around. We are all devastated and angry. It’s long past time that we were listened to and appropriate action was taken. 💙
May 12, 2025 at 8:55 AM
Every single person with #ME or #longcovid deserves better. Better care, better recognition, better research, a better life. Please read this statement and, if possible, pass it around. We are all devastated and angry. It’s long past time that we were listened to and appropriate action was taken. 💙
Reposted by Alex
The Clinical Care Guide for #MECFS, #LongCOVID & IACCs is here! Download, share, and use it to support better care. BHC's approach is now freely available—designed to help providers manage complex conditions with clarity & compassion. Download it. Share it. Use it. bit.ly/432YdzF
May 9, 2025 at 7:56 PM
The Clinical Care Guide for #MECFS, #LongCOVID & IACCs is here! Download, share, and use it to support better care. BHC's approach is now freely available—designed to help providers manage complex conditions with clarity & compassion. Download it. Share it. Use it. bit.ly/432YdzF
Reposted by Alex
So delighted that all 72 LibDem MPs signed this letter to @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social asking the govt to back the ME/CFS Delivery Plan with the resources it deserves. May this be a huge encouragement to the ME community and the start of meaningful change. #WorldMEDay
May 8, 2025 at 4:32 PM
So delighted that all 72 LibDem MPs signed this letter to @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social asking the govt to back the ME/CFS Delivery Plan with the resources it deserves. May this be a huge encouragement to the ME community and the start of meaningful change. #WorldMEDay
Reposted by Alex
1) OMG we did it‼️‼️
In this film for #MEawarenessmonth, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before.
They speak candidly about their experiences
youtu.be/J0ywwLIfH_w?...
In this film for #MEawarenessmonth, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before.
They speak candidly about their experiences
youtu.be/J0ywwLIfH_w?...
Doctors as Patients (with subtitles)
YouTube video by Anil about ME
youtu.be
May 1, 2025 at 11:01 AM
1) OMG we did it‼️‼️
In this film for #MEawarenessmonth, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before.
They speak candidly about their experiences
youtu.be/J0ywwLIfH_w?...
In this film for #MEawarenessmonth, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before.
They speak candidly about their experiences
youtu.be/J0ywwLIfH_w?...
Reposted by Alex
A #disability charity has blocked Prime Minister Keir Starmer from moving his constituency office into its building – over discriminatory #welfare policies.
www.camdennewjournal.co.uk/article/char...
#DisabilityRebellion #BenefitCuts
www.camdennewjournal.co.uk/article/char...
#DisabilityRebellion #BenefitCuts
Charity snubs Prime Minister Sir Keir Starmer over constituency office move
Exclusive: Chair of trustees says request was 'inappropriate' after welfare benefit cuts
www.camdennewjournal.co.uk
May 2, 2025 at 11:35 AM
A #disability charity has blocked Prime Minister Keir Starmer from moving his constituency office into its building – over discriminatory #welfare policies.
www.camdennewjournal.co.uk/article/char...
#DisabilityRebellion #BenefitCuts
www.camdennewjournal.co.uk/article/char...
#DisabilityRebellion #BenefitCuts
Reposted by Alex
“Cure ME/CFS” banner at a German football league match.
I love this kind of activism—it builds public awareness and sympathy in ways otherwise impossible.
Guerrilla actions are so hard for pwME, who often don’t have the energy. But thankfully, some still manage to make it happen.
@emptystands.me
I love this kind of activism—it builds public awareness and sympathy in ways otherwise impossible.
Guerrilla actions are so hard for pwME, who often don’t have the energy. But thankfully, some still manage to make it happen.
@emptystands.me
In der Südkurve gab es heute Support für Empty Stands. 🫶
(Bestimmt hat jemand bessere Bilder, ich hatte ganz klassisch eine Fahne im Sichtfeld.)
@emptystands.me
@ffhambu.bsky.social
@bdk1.bsky.social
(Bestimmt hat jemand bessere Bilder, ich hatte ganz klassisch eine Fahne im Sichtfeld.)
@emptystands.me
@ffhambu.bsky.social
@bdk1.bsky.social
April 7, 2025 at 4:45 PM
“Cure ME/CFS” banner at a German football league match.
I love this kind of activism—it builds public awareness and sympathy in ways otherwise impossible.
Guerrilla actions are so hard for pwME, who often don’t have the energy. But thankfully, some still manage to make it happen.
@emptystands.me
I love this kind of activism—it builds public awareness and sympathy in ways otherwise impossible.
Guerrilla actions are so hard for pwME, who often don’t have the energy. But thankfully, some still manage to make it happen.
@emptystands.me
Reposted by Alex
This is a seminal moment: a Labour government cutting disability benefits. Not just continuing Tory levels. Cutting.
This comes after a week of speculation, itself an act of cruelty by a government toying with people’s dignity.
These cuts are disgraceful - and they will cost lives.
This comes after a week of speculation, itself an act of cruelty by a government toying with people’s dignity.
These cuts are disgraceful - and they will cost lives.
March 18, 2025 at 1:48 PM
This is a seminal moment: a Labour government cutting disability benefits. Not just continuing Tory levels. Cutting.
This comes after a week of speculation, itself an act of cruelty by a government toying with people’s dignity.
These cuts are disgraceful - and they will cost lives.
This comes after a week of speculation, itself an act of cruelty by a government toying with people’s dignity.
These cuts are disgraceful - and they will cost lives.
Reposted by Alex
The NHS GP-Patient Survey is 5 times bigger than the ONS Survey with nearly 700K respondents.
They estimate over 3M people in the U.K. have long Covid. COVID-19 is still causing long Covid yet we’re doing nothing about it.
We should prevent illness not punish disabled people!
They estimate over 3M people in the U.K. have long Covid. COVID-19 is still causing long Covid yet we’re doing nothing about it.
We should prevent illness not punish disabled people!
March 13, 2025 at 11:19 AM
The NHS GP-Patient Survey is 5 times bigger than the ONS Survey with nearly 700K respondents.
They estimate over 3M people in the U.K. have long Covid. COVID-19 is still causing long Covid yet we’re doing nothing about it.
We should prevent illness not punish disabled people!
They estimate over 3M people in the U.K. have long Covid. COVID-19 is still causing long Covid yet we’re doing nothing about it.
We should prevent illness not punish disabled people!
Reposted by Alex
That must be one of the most Orwellian statements ever. It’s bad enough to cut people’s benefits. To pretend some kind of higher “moral” duty while you’re doing so is insulting and offensive
Ministers have 'moral' duty to cut benefits spending, Labour MPs say
Labour is anxious to reduce the rising welfare bill as it plans boosting defence spending at a time when the Chancellor is perilously short of extra cash
inews.co.uk
March 9, 2025 at 8:41 PM
That must be one of the most Orwellian statements ever. It’s bad enough to cut people’s benefits. To pretend some kind of higher “moral” duty while you’re doing so is insulting and offensive
Reposted by Alex
Cerebrospinal fluid
‘..may indicate myelin and white matter dysfunction in ME/CFS’
‘..may indicate myelin and white matter dysfunction in ME/CFS’
New from the US
Cerebrospinal fluid metabolomics, lipidomics and serine pathway dysfunction in myalgic encephalomyelitis/chronic fatigue syndroome (ME/CFS)
www.nature.com/articles/s41...
#MEcfs #CFS
Cerebrospinal fluid metabolomics, lipidomics and serine pathway dysfunction in myalgic encephalomyelitis/chronic fatigue syndroome (ME/CFS)
www.nature.com/articles/s41...
#MEcfs #CFS
March 3, 2025 at 10:29 PM
Cerebrospinal fluid
‘..may indicate myelin and white matter dysfunction in ME/CFS’
‘..may indicate myelin and white matter dysfunction in ME/CFS’