@susiewo.bsky.social
Biomedical Scientist before virus in 97’ triggered ME; a body that no longer worked, lost job I loved. Supporting campaigning for change, for proper diagnosis & management #ME/CFS https://youtu.be/RiwX9Y0NbiQ
Reposted
📢 Today @karenlhargrave.bsky.social and @binitakane.bsky.social will be representing #ThereForME on the Task & Finish group for the new delivery plan for ME.
Today's #ThereForME blog outlines six things they'll be looking out for as the delivery plan is finalised.
www.thereforme.uk/p/a-delivery...
Today's #ThereForME blog outlines six things they'll be looking out for as the delivery plan is finalised.
www.thereforme.uk/p/a-delivery...
January 14, 2025 at 9:08 AM
📢 Today @karenlhargrave.bsky.social and @binitakane.bsky.social will be representing #ThereForME on the Task & Finish group for the new delivery plan for ME.
Today's #ThereForME blog outlines six things they'll be looking out for as the delivery plan is finalised.
www.thereforme.uk/p/a-delivery...
Today's #ThereForME blog outlines six things they'll be looking out for as the delivery plan is finalised.
www.thereforme.uk/p/a-delivery...
Reposted
The BMJ @bmj.com has published a review of Long Covid interventions that of course recommends CBT and a mental/physical health rehab program. But the studies underlying the recommendations are at "high risk of bias." This is really propaganda.
virology.ws/2024/12/03/t...
virology.ws/2024/12/03/t...
Trial By Error: Yet Again BMJ Recommends CBT and Exercise for Long Covid | Virology Blog
By David Tuller, DrPH What is going on at The BMJ? In May, the journal corrected an obvious error in a paper about a prominent Long Covid mental and physica ...
virology.ws
December 3, 2024 at 8:31 PM
The BMJ @bmj.com has published a review of Long Covid interventions that of course recommends CBT and a mental/physical health rehab program. But the studies underlying the recommendations are at "high risk of bias." This is really propaganda.
virology.ws/2024/12/03/t...
virology.ws/2024/12/03/t...
Reposted
Please share widely! This was the best an inquest could do. It took 4 years and the death of my only child to get here.
NHS England must keep to this promise; the simplest change to a long established narrative that killed Maeve and threatens every other person with #ME.
🙏 @gwynnemp.bsky.social
NHS England must keep to this promise; the simplest change to a long established narrative that killed Maeve and threatens every other person with #ME.
🙏 @gwynnemp.bsky.social
🧵 #MaeveInquest update. A world first is promised.
NHS England's response states (where they were refusing to discuss commissioning of a specialist service for ME to prevent starvation, which is the best metaphor for #ME and #LongCovid during the inquest) NHS Executive is currently in talks with NHS
NHS England's response states (where they were refusing to discuss commissioning of a specialist service for ME to prevent starvation, which is the best metaphor for #ME and #LongCovid during the inquest) NHS Executive is currently in talks with NHS
December 6, 2024 at 8:20 AM
Please share widely! This was the best an inquest could do. It took 4 years and the death of my only child to get here.
NHS England must keep to this promise; the simplest change to a long established narrative that killed Maeve and threatens every other person with #ME.
🙏 @gwynnemp.bsky.social
NHS England must keep to this promise; the simplest change to a long established narrative that killed Maeve and threatens every other person with #ME.
🙏 @gwynnemp.bsky.social
Reposted
"NHS to review ME services after death of Maeve Boothby O’Neill: Health minister and Nice commit to work to improve patient outcomes after landmark inquest" (The Times):
www.thetimes.com/uk/healthcar...
www.thetimes.com/uk/healthcar...
NHS to review ME services after death of Maeve Boothby O’Neill
Health minister and Nice commit to work to improve patient outcomes after landmark inquest
www.thetimes.com
December 6, 2024 at 7:47 AM
"NHS to review ME services after death of Maeve Boothby O’Neill: Health minister and Nice commit to work to improve patient outcomes after landmark inquest" (The Times):
www.thetimes.com/uk/healthcar...
www.thetimes.com/uk/healthcar...
Reposted
📣 If you’re in the UK and have not done so already, please email your MP today asking them to get involved with the #LongCovid APPG (All-Party Parliamentary Group)!!
Suggested content for your email can be found here:
www.longcovid.org/impact/news/...
Suggested content for your email can be found here:
www.longcovid.org/impact/news/...
December 5, 2024 at 8:56 AM
📣 If you’re in the UK and have not done so already, please email your MP today asking them to get involved with the #LongCovid APPG (All-Party Parliamentary Group)!!
Suggested content for your email can be found here:
www.longcovid.org/impact/news/...
Suggested content for your email can be found here:
www.longcovid.org/impact/news/...
Reposted
From Germany:
Persistence of spike protein at the skull-meninges-brain axis may contribute to the neurological sequelae of COVID-19
www.cell.com/cell-host-mi...
Screenshot from Science for ME update
#LongCovid #PASC #PwLC #PostCovidSyndrome #longhaulers #COVIDBrain
Persistence of spike protein at the skull-meninges-brain axis may contribute to the neurological sequelae of COVID-19
www.cell.com/cell-host-mi...
Screenshot from Science for ME update
#LongCovid #PASC #PwLC #PostCovidSyndrome #longhaulers #COVIDBrain
December 3, 2024 at 2:01 PM
Reposted
Dec 1: It's Dr William Weir, who has worked with and supported patients with ME for decades.
His message: “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”
His message: “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”
December 1, 2024 at 9:00 AM
Dec 1: It's Dr William Weir, who has worked with and supported patients with ME for decades.
His message: “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”
His message: “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”
Reposted
Find #MECFS, #LongCovid, and related news, advocacy and research in our latest News in Brief forum post for w/c 18th Nov.
Topics covered:
News, articles and advocacy
In Memory
Trial by Error by David Tuller
Research news
& Published research
www.s4me.info/threads/news...
Topics covered:
News, articles and advocacy
In Memory
Trial by Error by David Tuller
Research news
& Published research
www.s4me.info/threads/news...
News in Brief - November 2024
This thread has a Science for ME 'News in Brief' post for each week in November 2024 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman....
www.s4me.info
November 24, 2024 at 9:58 AM
Find #MECFS, #LongCovid, and related news, advocacy and research in our latest News in Brief forum post for w/c 18th Nov.
Topics covered:
News, articles and advocacy
In Memory
Trial by Error by David Tuller
Research news
& Published research
www.s4me.info/threads/news...
Topics covered:
News, articles and advocacy
In Memory
Trial by Error by David Tuller
Research news
& Published research
www.s4me.info/threads/news...
Reposted
Why are they suggesting exercise to "prevent" Long Covid? And CBT as a treatment? Based on "evidence" that doesn't pass the smell test, it seems.
My submission on the new Canadian draft recommendations for Long Covid
#LongCovid #MECFS #pwME @exceedhergrasp1.bsky.social @donoharmbc.bsky.social
thesciencebit.net/2024/11/21/m...
#LongCovid #MECFS #pwME @exceedhergrasp1.bsky.social @donoharmbc.bsky.social
thesciencebit.net/2024/11/21/m...
My submission on the new Canadian draft recommendations for Long Covid
From Jaime Seltzer over on Bluesky: Please call for this one, guys, this is a horrific turn. There is something at the core of these folks that cannot accept patient narrative as a source of real data...
thesciencebit.net
November 23, 2024 at 7:52 PM
Why are they suggesting exercise to "prevent" Long Covid? And CBT as a treatment? Based on "evidence" that doesn't pass the smell test, it seems.
Reposted
I spoke earlier today with @karenlhargrave.bsky.social about the #ThereForME campaign to bring awareness to lack of care and treatment for patients with ME and Long Covid.
virology.ws/2024/11/21/t...
virology.ws/2024/11/21/t...
Trial By Error: Interview with Karen Hargrave, Co-Founder of #ThereForME | Virology Blog
By David Tuller, DrPH Karen Hargrave is co-founder of an advocacy campaign called #ThereForME, which was launched this past summer to draw public awareness ...
virology.ws
November 22, 2024 at 3:29 AM
I spoke earlier today with @karenlhargrave.bsky.social about the #ThereForME campaign to bring awareness to lack of care and treatment for patients with ME and Long Covid.
virology.ws/2024/11/21/t...
virology.ws/2024/11/21/t...
November 23, 2024 at 1:56 PM