@jennywi.bsky.social
Reposted
(UK) Recording of Westminster Hall debate: "Government support for people with myalgic encephalomyelitis" (i.e. in the Houses of Parliament)
www.parliamentlive.tv/Event/Index/...
This 4:30pm debate was led by Tessa Munt MP @tessamunt.bsky.social
#MyalgicEncephalomyelitis #PwME #MEcfs #CFS
www.parliamentlive.tv/Event/Index/...
This 4:30pm debate was led by Tessa Munt MP @tessamunt.bsky.social
#MyalgicEncephalomyelitis #PwME #MEcfs #CFS
November 19, 2025 at 6:29 PM
(UK) Recording of Westminster Hall debate: "Government support for people with myalgic encephalomyelitis" (i.e. in the Houses of Parliament)
www.parliamentlive.tv/Event/Index/...
This 4:30pm debate was led by Tessa Munt MP @tessamunt.bsky.social
#MyalgicEncephalomyelitis #PwME #MEcfs #CFS
www.parliamentlive.tv/Event/Index/...
This 4:30pm debate was led by Tessa Munt MP @tessamunt.bsky.social
#MyalgicEncephalomyelitis #PwME #MEcfs #CFS
Reposted
Within a week of the plan being published, There were three petitions for people with severe ME being held against their will by the NHS. And now this mother of a child with ME being *arrested* for her death despite the harms caused by THE NHS!!!
July 31, 2025 at 1:38 PM
Within a week of the plan being published, There were three petitions for people with severe ME being held against their will by the NHS. And now this mother of a child with ME being *arrested* for her death despite the harms caused by THE NHS!!!
Reposted
Flashback 8 years to this BBC Radio 4 File on Four episode on children with ME, and the tendency of social services to inappropriately invoke FII on extremely sick children and their parents
www.bbc.co.uk/sounds/play/...
www.bbc.co.uk/sounds/play/...
File on 4 Investigates - Children with ME - BBC Sounds
Families of children with a severe fatigue condition say they have been accused of abuse.
www.bbc.co.uk
July 31, 2025 at 11:28 AM
Flashback 8 years to this BBC Radio 4 File on Four episode on children with ME, and the tendency of social services to inappropriately invoke FII on extremely sick children and their parents
www.bbc.co.uk/sounds/play/...
www.bbc.co.uk/sounds/play/...
Reposted
Phenomenal journalism investigating the FII crisis for families with disabled, ill & vulnerable children by Emily Dugan.
We know this is negatively impacting #LongCovid families & urgent change is needed to the @rcpch.bsky.social FII guidelines. 🧵1/7
TW
🗞️🖇️ tinyurl.com/bdcrsxrj
We know this is negatively impacting #LongCovid families & urgent change is needed to the @rcpch.bsky.social FII guidelines. 🧵1/7
TW
🗞️🖇️ tinyurl.com/bdcrsxrj
July 20, 2025 at 7:06 AM
Phenomenal journalism investigating the FII crisis for families with disabled, ill & vulnerable children by Emily Dugan.
We know this is negatively impacting #LongCovid families & urgent change is needed to the @rcpch.bsky.social FII guidelines. 🧵1/7
TW
🗞️🖇️ tinyurl.com/bdcrsxrj
We know this is negatively impacting #LongCovid families & urgent change is needed to the @rcpch.bsky.social FII guidelines. 🧵1/7
TW
🗞️🖇️ tinyurl.com/bdcrsxrj
Reposted
Oxford scholars say biomedical research requirements for evidence help "construct" what they call "chronicity rhetoric" around fibromyalgia. That means biopsychosocialists aren't allowed to make whatever "recovery" claims they want. Hm. virology.ws/2025/07/18/t...
Trial By Error: Oxford Scholars Blame Biomedical Research Hegemony for Fibromyalgia "Chronicity Rhetoric" | Virology Blog
By David Tuller, DrPH Social Science & Medicine (SSM) is a prominent interdisciplinary journal that publishes social science research related to health. ...
virology.ws
July 18, 2025 at 10:02 PM
Oxford scholars say biomedical research requirements for evidence help "construct" what they call "chronicity rhetoric" around fibromyalgia. That means biopsychosocialists aren't allowed to make whatever "recovery" claims they want. Hm. virology.ws/2025/07/18/t...
Reposted
Hero to #pwME Dr Nigel Speight is fundraising for @medicalaidpal.bsky.social & cycling from Lands End➡️John O'Groats
"With the terrible things that are happening in Gaza & the West Bank it's difficult to think of a more worthwhile charity than MAP" Dr Speight
🔗👇
www.justgiving.com/page/arthur-...
"With the terrible things that are happening in Gaza & the West Bank it's difficult to think of a more worthwhile charity than MAP" Dr Speight
🔗👇
www.justgiving.com/page/arthur-...
Nigel Speight's fundraiser for Medical Aid for Palestinians
Help Arthur Nigel Podmore Speight raise money to support Medical Aid for Palestinians
www.justgiving.com
July 20, 2025 at 3:42 PM
Hero to #pwME Dr Nigel Speight is fundraising for @medicalaidpal.bsky.social & cycling from Lands End➡️John O'Groats
"With the terrible things that are happening in Gaza & the West Bank it's difficult to think of a more worthwhile charity than MAP" Dr Speight
🔗👇
www.justgiving.com/page/arthur-...
"With the terrible things that are happening in Gaza & the West Bank it's difficult to think of a more worthwhile charity than MAP" Dr Speight
🔗👇
www.justgiving.com/page/arthur-...
Reposted
Trial by Error by David Tuller Oxford Scholars Blame Biomedical Research Hegemony for Fibromyalgia "Chronicity Rhetoric" by @davetuller1.bsky.social
virology.ws/2025/07/18/t...
Image is from the Science for ME weekly update
#MEcfs #fibromyalgia
virology.ws/2025/07/18/t...
Image is from the Science for ME weekly update
#MEcfs #fibromyalgia
July 21, 2025 at 1:21 AM
Trial by Error by David Tuller Oxford Scholars Blame Biomedical Research Hegemony for Fibromyalgia "Chronicity Rhetoric" by @davetuller1.bsky.social
virology.ws/2025/07/18/t...
Image is from the Science for ME weekly update
#MEcfs #fibromyalgia
virology.ws/2025/07/18/t...
Image is from the Science for ME weekly update
#MEcfs #fibromyalgia
Reposted
I’ve lost so many people to #SevereME and #VerySevereME
Will remember you, Bridget 💙🕯️
Please read this last piece from Bridget about how governments have failed MECFS and Long Covid patients
Please take the fury we feel into your heart and use it to help us 2/2 open.substack.com/pub/bridgeto...
Will remember you, Bridget 💙🕯️
Please read this last piece from Bridget about how governments have failed MECFS and Long Covid patients
Please take the fury we feel into your heart and use it to help us 2/2 open.substack.com/pub/bridgeto...
Buried Alive by Government “Experts”
The Betrayal of the Worldwide Health Institutes’ Passivity in Erasing a Deadly Plight
open.substack.com
July 20, 2025 at 10:17 AM
I’ve lost so many people to #SevereME and #VerySevereME
Will remember you, Bridget 💙🕯️
Please read this last piece from Bridget about how governments have failed MECFS and Long Covid patients
Please take the fury we feel into your heart and use it to help us 2/2 open.substack.com/pub/bridgeto...
Will remember you, Bridget 💙🕯️
Please read this last piece from Bridget about how governments have failed MECFS and Long Covid patients
Please take the fury we feel into your heart and use it to help us 2/2 open.substack.com/pub/bridgeto...
Reposted
"The Canary: A woman from Canada with severe ME has been approved for MAiD - but she wants to live"
www.thecanary.co/global/world...
Image is from Science for ME weekly update
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
www.thecanary.co/global/world...
Image is from Science for ME weekly update
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
December 23, 2024 at 6:32 PM
"The Canary: A woman from Canada with severe ME has been approved for MAiD - but she wants to live"
www.thecanary.co/global/world...
Image is from Science for ME weekly update
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
www.thecanary.co/global/world...
Image is from Science for ME weekly update
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Reposted
Human genetics implicate thromboembolism in the pathogenesis of long COVID in individuals of European ancestry
www.medrxiv.org/content/10.1...
"our findings indicate that thromboembolic pathways may contribute to #longCOVID independently of acute disease severity"
#PASC #TeamClots
www.medrxiv.org/content/10.1...
"our findings indicate that thromboembolic pathways may contribute to #longCOVID independently of acute disease severity"
#PASC #TeamClots
Human genetics implicate thromboembolism in the pathogenesis of long COVID in individuals of European ancestry
SARS-CoV-2 infection can result in long COVID, characterized by post-acute symptoms from multiple organs. Current hypotheses on mechanisms underlying long COVID include persistent inflammation and thr...
www.medrxiv.org
December 15, 2024 at 4:06 PM
Human genetics implicate thromboembolism in the pathogenesis of long COVID in individuals of European ancestry
www.medrxiv.org/content/10.1...
"our findings indicate that thromboembolic pathways may contribute to #longCOVID independently of acute disease severity"
#PASC #TeamClots
www.medrxiv.org/content/10.1...
"our findings indicate that thromboembolic pathways may contribute to #longCOVID independently of acute disease severity"
#PASC #TeamClots
Reposted
Great to see ongoing studies like this:
Serial Paediatrics Omics Tracking in #ME (SPOT-ME): protocol paper for a multidisciplinary, observational study of clinical & biological markers of paediatric ME/CFS in Australian adolescents aged 12–19 years
bmjopen.bmj.com/content/14/1...
#MEcfs #CFS #PwME
Serial Paediatrics Omics Tracking in #ME (SPOT-ME): protocol paper for a multidisciplinary, observational study of clinical & biological markers of paediatric ME/CFS in Australian adolescents aged 12–19 years
bmjopen.bmj.com/content/14/1...
#MEcfs #CFS #PwME
Serial Paediatrics Omics Tracking in Myalgic Encephalomyelitis (SPOT-ME): protocol paper for a multidisciplinary, observational study of clinical and biological markers of paediatric myalgic encephalo...
Introduction Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition that can affect adolescents during a vulnerable period of development. The underlying biological mecha...
bmjopen.bmj.com
December 11, 2024 at 12:46 PM
Great to see ongoing studies like this:
Serial Paediatrics Omics Tracking in #ME (SPOT-ME): protocol paper for a multidisciplinary, observational study of clinical & biological markers of paediatric ME/CFS in Australian adolescents aged 12–19 years
bmjopen.bmj.com/content/14/1...
#MEcfs #CFS #PwME
Serial Paediatrics Omics Tracking in #ME (SPOT-ME): protocol paper for a multidisciplinary, observational study of clinical & biological markers of paediatric ME/CFS in Australian adolescents aged 12–19 years
bmjopen.bmj.com/content/14/1...
#MEcfs #CFS #PwME
Reposted
Dec 11: Prof Chris Ponting is #ThereForME! @cgatist.bsky.social leads @decodemestudy.bsky.social, the world’s largest ME genetic study.
“My Christmas wish for people with ME and Long Covid is: Many scientific breakthroughs – a ‘True Dawn’ bringing us much closer to effective therapies. Chris xx”
“My Christmas wish for people with ME and Long Covid is: Many scientific breakthroughs – a ‘True Dawn’ bringing us much closer to effective therapies. Chris xx”
December 11, 2024 at 9:00 AM
Dec 11: Prof Chris Ponting is #ThereForME! @cgatist.bsky.social leads @decodemestudy.bsky.social, the world’s largest ME genetic study.
“My Christmas wish for people with ME and Long Covid is: Many scientific breakthroughs – a ‘True Dawn’ bringing us much closer to effective therapies. Chris xx”
“My Christmas wish for people with ME and Long Covid is: Many scientific breakthroughs – a ‘True Dawn’ bringing us much closer to effective therapies. Chris xx”
Reposted
We know there will be many who can't access the calendar themselves but we hope their carers (if they are lucky enough to have them) can feel strengthened by the show of support and pass it on if at all possible. 💙 #ThereForME
December 1, 2024 at 9:00 AM
We know there will be many who can't access the calendar themselves but we hope their carers (if they are lucky enough to have them) can feel strengthened by the show of support and pass it on if at all possible. 💙 #ThereForME
Reposted
Shout-out to the researchers who are including ppl with severe #mecfs in their studies. Samples from patients at a range of severity levels make for better science 🙂 @hayleygleeson.bsky.social @bhanlon15.bsky.social @tomkindlon.bsky.social @exceedhergrasp1.bsky.social
Nearly 20 home visits to people with ME done in the last two weeks (and a few with Long COVID as well). Many more to come. Thank you for your generosity. #MECFS #LongCOVID
November 14, 2024 at 8:50 AM
Shout-out to the researchers who are including ppl with severe #mecfs in their studies. Samples from patients at a range of severity levels make for better science 🙂 @hayleygleeson.bsky.social @bhanlon15.bsky.social @tomkindlon.bsky.social @exceedhergrasp1.bsky.social
Reposted
Decades of countless N=1 anecdotes, headlines declaring 'miracle cures' aggressive marketing by grifters, all targeting vulnerable desperate #pwME have done every 1 of us incalculable harm
The void left by lack of treatments for #ME was filled with lies when we needed funding for biomedical research
The void left by lack of treatments for #ME was filled with lies when we needed funding for biomedical research
November 14, 2024 at 3:01 PM
Reposted
Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a retrospective study of 101 patients treated with a low dose of Aripiprazole pmc.ncbi.nlm.nih.gov/articles/PMC...
Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a retrospective study of 101 patients treated with a low dose of Aripiprazol...
pmc.ncbi.nlm.nih.gov
November 14, 2024 at 1:40 PM
Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a retrospective study of 101 patients treated with a low dose of Aripiprazole pmc.ncbi.nlm.nih.gov/articles/PMC...
Reposted
Please sign and share the below, hugely important given the recent developments!
✨This petition will close TOMORROW, Nov 15!✨ We're over 7k-- next stop 10k!
In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses.
Sign & share widely!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses.
Sign & share widely!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
November 14, 2024 at 3:02 PM
Please sign and share the below, hugely important given the recent developments!
Reposted
For my first post on Bluesky I thought I’d re-share the song I wrote and produced in 2018, performed by people with ME/CFS from 7 different countries
1/
1/
A song for ME: Blowin' in the Wind
YouTube video by MisterRob1973
youtu.be
November 12, 2024 at 3:28 PM
For my first post on Bluesky I thought I’d re-share the song I wrote and produced in 2018, performed by people with ME/CFS from 7 different countries
1/
1/
Reposted
💫Wow, it's been quite the few days here.
It's been marvellous to see Bluesky catch alight🔥
A huge welcome and THANK YOU to all our followers - together let's advocate for a better world for all those affected by #LongCovid & #ME
It's been marvellous to see Bluesky catch alight🔥
A huge welcome and THANK YOU to all our followers - together let's advocate for a better world for all those affected by #LongCovid & #ME
November 10, 2024 at 7:38 PM
💫Wow, it's been quite the few days here.
It's been marvellous to see Bluesky catch alight🔥
A huge welcome and THANK YOU to all our followers - together let's advocate for a better world for all those affected by #LongCovid & #ME
It's been marvellous to see Bluesky catch alight🔥
A huge welcome and THANK YOU to all our followers - together let's advocate for a better world for all those affected by #LongCovid & #ME
Reposted
The flawed and outdated Cochrane review on exercise in ME/CFS still hasn't been withdrawn, and continues to harm patients.
I saw a patient last week with ME who in 2023 was told by the MECFS service to ‘get back to the gym’. She did 20 minutes, collapsed and hasn’t walked since. The advice is still out there, still wrong and the harm is real.
Cochrane is stubbornly refusing to withdraw the 2019 review recommending exercise therapy for ME/CFS despite being supplied with ample evidence that it doesn't work and causes harm for #pwME with post exertional malaise.
Please sign the petition:
chng.it/zTZ7vX9Czd
Please sign the petition:
chng.it/zTZ7vX9Czd
November 11, 2024 at 10:25 AM
The flawed and outdated Cochrane review on exercise in ME/CFS still hasn't been withdrawn, and continues to harm patients.
Reposted
🗞️In The Times feat ME Action for Scotland
"We believe it is only a matter of time before a patient with severe/very severe ME dies in Scotland due to the lack of health care provision and the extremely limited training for healthcare professionals.”
Open access article 👇
archive.ph/3iVtq
"We believe it is only a matter of time before a patient with severe/very severe ME dies in Scotland due to the lack of health care provision and the extremely limited training for healthcare professionals.”
Open access article 👇
archive.ph/3iVtq
November 11, 2024 at 11:53 AM
🗞️In The Times feat ME Action for Scotland
"We believe it is only a matter of time before a patient with severe/very severe ME dies in Scotland due to the lack of health care provision and the extremely limited training for healthcare professionals.”
Open access article 👇
archive.ph/3iVtq
"We believe it is only a matter of time before a patient with severe/very severe ME dies in Scotland due to the lack of health care provision and the extremely limited training for healthcare professionals.”
Open access article 👇
archive.ph/3iVtq
Reposted
#LongCovid #MECFS
follow to get involved and get more billboards up!
GofundMe -
www.gofundme.com/f/billboards...
Website - www.notrecovereduk.org
follow to get involved and get more billboards up!
GofundMe -
www.gofundme.com/f/billboards...
Website - www.notrecovereduk.org
October 19, 2024 at 1:11 AM
#LongCovid #MECFS
follow to get involved and get more billboards up!
GofundMe -
www.gofundme.com/f/billboards...
Website - www.notrecovereduk.org
follow to get involved and get more billboards up!
GofundMe -
www.gofundme.com/f/billboards...
Website - www.notrecovereduk.org
Reposted
💙Emotional and in-depth 1st person account of Maeve's illness and inquiry by Sean O'Neill
⚖️Telling of the political, medical and legal failures inherent in this austeric system
🤷♀️Will we get commissioned services for severe #ME? @wesstreeting @NHSEnglandNMD it's over to you
⚖️Telling of the political, medical and legal failures inherent in this austeric system
🤷♀️Will we get commissioned services for severe #ME? @wesstreeting @NHSEnglandNMD it's over to you
October 19, 2024 at 9:23 AM
💙Emotional and in-depth 1st person account of Maeve's illness and inquiry by Sean O'Neill
⚖️Telling of the political, medical and legal failures inherent in this austeric system
🤷♀️Will we get commissioned services for severe #ME? @wesstreeting @NHSEnglandNMD it's over to you
⚖️Telling of the political, medical and legal failures inherent in this austeric system
🤷♀️Will we get commissioned services for severe #ME? @wesstreeting @NHSEnglandNMD it's over to you
Reposted
When NICE is writing newspaper editorials to complain that the NHS didn't implement their guideline, you know things must be really bad. #MEcfs
From Carole Bruce on Facebook. This is very outspoken and helps build pressure for change.
October 3, 2024 at 10:15 AM
When NICE is writing newspaper editorials to complain that the NHS didn't implement their guideline, you know things must be really bad. #MEcfs