Viv
@stillviv.bsky.social
Biomedical engineer, mathematician, equestrian, thru-hiker and generally outdoorsy - now 99% bedbound with #severeME. I like posts on science, literature, world history and art.
Reposted by Viv
This looks like an interesting and much needed project.
In Neunkirchen-Seelscheid in Germany, a housing project is being planned especially for severely ME/CFS sufferers with 24-hour assistance.
sozialhummel.de/wohn...
In Neunkirchen-Seelscheid in Germany, a housing project is being planned especially for severely ME/CFS sufferers with 24-hour assistance.
sozialhummel.de/wohn...
April 19, 2025 at 8:18 AM
This looks like an interesting and much needed project.
In Neunkirchen-Seelscheid in Germany, a housing project is being planned especially for severely ME/CFS sufferers with 24-hour assistance.
sozialhummel.de/wohn...
In Neunkirchen-Seelscheid in Germany, a housing project is being planned especially for severely ME/CFS sufferers with 24-hour assistance.
sozialhummel.de/wohn...
#5JaarLongCovid
5 jaar geleden keek ik, als toen al huisgebonden ME patient, aan de zijlijn mee hoe Covid een ravage aanrichtte.
5 jaar geleden keek ik, als toen al huisgebonden ME patient, aan de zijlijn mee hoe Covid een ravage aanrichtte.
March 15, 2025 at 1:17 PM
#5JaarLongCovid
5 jaar geleden keek ik, als toen al huisgebonden ME patient, aan de zijlijn mee hoe Covid een ravage aanrichtte.
5 jaar geleden keek ik, als toen al huisgebonden ME patient, aan de zijlijn mee hoe Covid een ravage aanrichtte.
Reposted by Viv
🚨5 jaar Long Covid, nog steeds #NietHersteld !
Op 15 maart, #LongCovidAwarenessDay2025, is het tijd voor actie! Want ook al zie je ons misschien niet, we zijn er nog wel. En hoe er nu met deze groep omgegaan wordt kan niet langer! Samen kunnen we van ons laten horen! ✊💙 Doe je mee? #LongCovid🧵
Op 15 maart, #LongCovidAwarenessDay2025, is het tijd voor actie! Want ook al zie je ons misschien niet, we zijn er nog wel. En hoe er nu met deze groep omgegaan wordt kan niet langer! Samen kunnen we van ons laten horen! ✊💙 Doe je mee? #LongCovid🧵
March 3, 2025 at 4:09 PM
🚨5 jaar Long Covid, nog steeds #NietHersteld !
Op 15 maart, #LongCovidAwarenessDay2025, is het tijd voor actie! Want ook al zie je ons misschien niet, we zijn er nog wel. En hoe er nu met deze groep omgegaan wordt kan niet langer! Samen kunnen we van ons laten horen! ✊💙 Doe je mee? #LongCovid🧵
Op 15 maart, #LongCovidAwarenessDay2025, is het tijd voor actie! Want ook al zie je ons misschien niet, we zijn er nog wel. En hoe er nu met deze groep omgegaan wordt kan niet langer! Samen kunnen we van ons laten horen! ✊💙 Doe je mee? #LongCovid🧵
Reposted by Viv
It’s hard to explain the hope I had at the beginning of the pandemic. I was scared, but I also thought we were going to become a more inclusive society. We would care more about chronic illness.
Having that hope ripped away and replaced with eugenics & fascism has been incredibly painful.
Having that hope ripped away and replaced with eugenics & fascism has been incredibly painful.
February 25, 2025 at 4:50 AM
It’s hard to explain the hope I had at the beginning of the pandemic. I was scared, but I also thought we were going to become a more inclusive society. We would care more about chronic illness.
Having that hope ripped away and replaced with eugenics & fascism has been incredibly painful.
Having that hope ripped away and replaced with eugenics & fascism has been incredibly painful.
Reposted by Viv
Reposted by Viv
An off label medication list has been compiled for cover from the Austrian Health Insurance Fund for ME/CFS and Post Covid Sydrome (long Covid) www.meduniwien.ac.at/web/referenz...
I’ve used ChatGPT to translate them in the replies below this post in case it helps anyone else 🧵
I’ve used ChatGPT to translate them in the replies below this post in case it helps anyone else 🧵
Für Ärzt:innen & Gesundheitsberufe | MedUni Wien
www.meduniwien.ac.at
January 18, 2025 at 9:12 AM
An off label medication list has been compiled for cover from the Austrian Health Insurance Fund for ME/CFS and Post Covid Sydrome (long Covid) www.meduniwien.ac.at/web/referenz...
I’ve used ChatGPT to translate them in the replies below this post in case it helps anyone else 🧵
I’ve used ChatGPT to translate them in the replies below this post in case it helps anyone else 🧵
Reposted by Viv
Apparently, yet another well-respected figure of Long COVID research has said that we should move past the use of questionnaires and start doing trials using only biomarkers, so here is yet another thread on why that’s confused and harmful to sick people. Buckle up!
January 17, 2025 at 2:05 PM
Apparently, yet another well-respected figure of Long COVID research has said that we should move past the use of questionnaires and start doing trials using only biomarkers, so here is yet another thread on why that’s confused and harmful to sick people. Buckle up!
Reposted by Viv
Before you judge a disabled person for the way they’re coping with the messiness of life …consider the sickest you ever were. Maybe it was a flu or an infection thst required surgery
Try and remember the pain, fatigue & crushing monotony of it
Now imagine knowing it would never end. Then be kinder
Try and remember the pain, fatigue & crushing monotony of it
Now imagine knowing it would never end. Then be kinder
December 16, 2024 at 8:35 AM
Before you judge a disabled person for the way they’re coping with the messiness of life …consider the sickest you ever were. Maybe it was a flu or an infection thst required surgery
Try and remember the pain, fatigue & crushing monotony of it
Now imagine knowing it would never end. Then be kinder
Try and remember the pain, fatigue & crushing monotony of it
Now imagine knowing it would never end. Then be kinder
Interesting background information, I am now even more puzzled (and disappointed!) by the Cochrane decision.
1) Some background on the ongoing Cochrane saga...
In 2019, several patients and researchers had pointed out flaws in the exercise review for CFS and asked these to be corrected or withdrawn.
In 2019, several patients and researchers had pointed out flaws in the exercise review for CFS and asked these to be corrected or withdrawn.
Very disappointing news from Cochrane
www.cochrane.org/news/update-...
Existing review is not fit for purpose: See petition: Cochrane: Withdraw the harmful 2019 Exercise therapy for #CFS review
www.change.org/p/cochrane-w...
links to further info e.g.
www.cochranelibrary.com/cdsr/doi/10....
#MEcfs
www.cochrane.org/news/update-...
Existing review is not fit for purpose: See petition: Cochrane: Withdraw the harmful 2019 Exercise therapy for #CFS review
www.change.org/p/cochrane-w...
links to further info e.g.
www.cochranelibrary.com/cdsr/doi/10....
#MEcfs
December 16, 2024 at 4:45 PM
Interesting background information, I am now even more puzzled (and disappointed!) by the Cochrane decision.
Reposted by Viv
8-year anniversary of reanalysis paper on recovery in £5m #PACEtrial, with data the PACE team fought so hard to keep to themselves.
Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol
tandfonline.com/doi/full/10....
#MEcfs #CFS
Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol
tandfonline.com/doi/full/10....
#MEcfs #CFS
December 14, 2024 at 12:16 AM
8-year anniversary of reanalysis paper on recovery in £5m #PACEtrial, with data the PACE team fought so hard to keep to themselves.
Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol
tandfonline.com/doi/full/10....
#MEcfs #CFS
Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol
tandfonline.com/doi/full/10....
#MEcfs #CFS
Reposted by Viv
The last half of the 1990s was when the false image of ME/CFS as a
“yuppie“ disease began to crumble, thanks to good work done by Leonard Jason and others like this west coast group. I had been ill for over 13 years before the CDC finally acknowledged that Black people like me could have ME/CFS.
“yuppie“ disease began to crumble, thanks to good work done by Leonard Jason and others like this west coast group. I had been ill for over 13 years before the CDC finally acknowledged that Black people like me could have ME/CFS.
"most deprived" more likely to have #longcovid said the Guardian article from earlier this week.
The Syracuse Herald-Journal, US. 5th December 1996. #myalgicencephalomyelitis #cfsme #mecfs #myalgice affects certain groups of people including those with an "annual paycheck below $40,000"
The Syracuse Herald-Journal, US. 5th December 1996. #myalgicencephalomyelitis #cfsme #mecfs #myalgice affects certain groups of people including those with an "annual paycheck below $40,000"
December 5, 2024 at 4:56 PM
The last half of the 1990s was when the false image of ME/CFS as a
“yuppie“ disease began to crumble, thanks to good work done by Leonard Jason and others like this west coast group. I had been ill for over 13 years before the CDC finally acknowledged that Black people like me could have ME/CFS.
“yuppie“ disease began to crumble, thanks to good work done by Leonard Jason and others like this west coast group. I had been ill for over 13 years before the CDC finally acknowledged that Black people like me could have ME/CFS.
Reposted by Viv
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 by Viv
A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
That BMJ review of Long Covid therapies does not show what it says it does
The BMJ have published a “living systematic review” of interventions for the management of Long Covid. It sets out to gather all relevant studies, and to comb their findings in order to see what works...
thesciencebit.net
November 28, 2024 at 10:05 PM
A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
Reposted by Viv
For anyone who needs a reminder tonight - your value is not tied to your ability to work or participate in capitalism.
In fact - being disabled IS work.
People have no idea how much work. They imagine it like a vacation - laying around all day doing whatever fun activities you most enjoy.
🧵
In fact - being disabled IS work.
People have no idea how much work. They imagine it like a vacation - laying around all day doing whatever fun activities you most enjoy.
🧵
November 28, 2024 at 4:35 AM
For anyone who needs a reminder tonight - your value is not tied to your ability to work or participate in capitalism.
In fact - being disabled IS work.
People have no idea how much work. They imagine it like a vacation - laying around all day doing whatever fun activities you most enjoy.
🧵
In fact - being disabled IS work.
People have no idea how much work. They imagine it like a vacation - laying around all day doing whatever fun activities you most enjoy.
🧵
Fun challenge
Choose 20 books that have stayed with you or influenced you. One book per day for 20 days, in no particular order. No explanations, no reviews, just covers.
#BookSky💙📚
#Books
#BookChallenge
1/20
Choose 20 books that have stayed with you or influenced you. One book per day for 20 days, in no particular order. No explanations, no reviews, just covers.
#BookSky💙📚
#Books
#BookChallenge
1/20
November 23, 2024 at 1:59 PM
Fun challenge
Choose 20 books that have stayed with you or influenced you. One book per day for 20 days, in no particular order. No explanations, no reviews, just covers.
#BookSky💙📚
#Books
#BookChallenge
1/20
Choose 20 books that have stayed with you or influenced you. One book per day for 20 days, in no particular order. No explanations, no reviews, just covers.
#BookSky💙📚
#Books
#BookChallenge
1/20
Reposted by Viv
Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Let’s start with a trip down memory lane.
1/
1/
November 20, 2024 at 11:27 AM
Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Let’s start with a trip down memory lane.
1/
1/
Reposted by Viv
Just read the editorial published by the ME Association, and while I won't share it, here's my response:
No one claims that bedrest cures ME; rather, it's good to be as active as we can be without inducing PEM. The article is condescendingly written, strawmanning with the intent to agitate.
No one claims that bedrest cures ME; rather, it's good to be as active as we can be without inducing PEM. The article is condescendingly written, strawmanning with the intent to agitate.
November 20, 2024 at 4:25 PM
Just read the editorial published by the ME Association, and while I won't share it, here's my response:
No one claims that bedrest cures ME; rather, it's good to be as active as we can be without inducing PEM. The article is condescendingly written, strawmanning with the intent to agitate.
No one claims that bedrest cures ME; rather, it's good to be as active as we can be without inducing PEM. The article is condescendingly written, strawmanning with the intent to agitate.
Stichting Begrepen Klachten bestaat 1 jaar! Om dit te vieren willen we met deze video alle patiënten een hart onder de riem steken. Met ons team en met veel andere lotgenoten en organisaties – blijven we voor jullie strijden. #WijZienJou
www.youtube.com/watch?v=-4JY...
www.youtube.com/watch?v=-4JY...
#WijZienJou - Stichting Begrepen Klachten 1 jaar
YouTube video by Begrepen Klachten
www.youtube.com
September 12, 2024 at 11:13 AM
Reposted by Viv
Stichting Begrepen Klachten bestaat 1 jaar! Om dit te vieren willen we met deze video alle patiënten een hart onder de riem steken. Met ons team en met veel andere lotgenoten en organisaties – blijven we voor jullie strijden. #WijZienJou
www.youtube.com/watch?v=-4JY...
www.youtube.com/watch?v=-4JY...
#WijZienJou - Stichting Begrepen Klachten 1 jaar
YouTube video by Begrepen Klachten
www.youtube.com
September 12, 2024 at 11:04 AM
Stichting Begrepen Klachten bestaat 1 jaar! Om dit te vieren willen we met deze video alle patiënten een hart onder de riem steken. Met ons team en met veel andere lotgenoten en organisaties – blijven we voor jullie strijden. #WijZienJou
www.youtube.com/watch?v=-4JY...
www.youtube.com/watch?v=-4JY...
Reposted by Viv
Today, Aug 8, is #SevereMEDay. Today we discuss severe-presenting #MECFS and remember people with severe ME.
#MECFS is an infection-associated chronic illness, which means it is often, but not always, kicked off by an infection. ~Half of #LongCOVID cases at 6 mo meet the dx criteria for ME/CFS. 🧵
#MECFS is an infection-associated chronic illness, which means it is often, but not always, kicked off by an infection. ~Half of #LongCOVID cases at 6 mo meet the dx criteria for ME/CFS. 🧵
August 8, 2024 at 2:58 PM
Today, Aug 8, is #SevereMEDay. Today we discuss severe-presenting #MECFS and remember people with severe ME.
#MECFS is an infection-associated chronic illness, which means it is often, but not always, kicked off by an infection. ~Half of #LongCOVID cases at 6 mo meet the dx criteria for ME/CFS. 🧵
#MECFS is an infection-associated chronic illness, which means it is often, but not always, kicked off by an infection. ~Half of #LongCOVID cases at 6 mo meet the dx criteria for ME/CFS. 🧵