Sabine
@sabineg.bsky.social
Fighting ME/CFS and hoping for a brighter future
Somewhere in the U.K.
Somewhere in the U.K.
Reposted by Sabine
Yes, PIP partly compensates for underfunded services. People are more disabled because they didn’t get early treatment—or have to fund private care that should’ve been NHS or social care. The answer isn’t to strip PIP. It’s to fix the system that failed them. #WelfareNotWarfare
April 12, 2025 at 7:49 PM
Yes, PIP partly compensates for underfunded services. People are more disabled because they didn’t get early treatment—or have to fund private care that should’ve been NHS or social care. The answer isn’t to strip PIP. It’s to fix the system that failed them. #WelfareNotWarfare
Nature is so beautiful 😻
Taking a look at some seeds under the phone-microscope.
These are dried Allium seeds sitting in their pods.
These are dried Allium seeds sitting in their pods.
February 16, 2025 at 8:42 PM
Nature is so beautiful 😻
If you have the spoons, please consider signing in.
We really don’t want to become like the US with no monitoring at all…..
We really don’t want to become like the US with no monitoring at all…..
Petition to “Ensure that the UK Health Security Agency (UKHSA) monitors, and reports on, the numbers of COVID infections that occur in healthcare settings through its routine surveillance programmes”
Sign below ⬇️
Sign below ⬇️
Learned so much as a governor of an NHS Foundation Trust Hospital; a privilege to serve in this role for the last 10 years. An issue that continues to be of vital importance is the approach to infection prevention & control.
Please read & support this petition:
petition.parliament.uk/petitions/70...
Please read & support this petition:
petition.parliament.uk/petitions/70...
February 16, 2025 at 12:31 PM
If you have the spoons, please consider signing in.
We really don’t want to become like the US with no monitoring at all…..
We really don’t want to become like the US with no monitoring at all…..
It’s an interesting study with levels that look totally crazy until you realise it’s a weekly dose rather than a daily one.
But as usual with ME, going slowly helps
But as usual with ME, going slowly helps
A warning RE this new study to those with severe Long Covid or ME/CFS: high doses of Vit D can make us feel MUCH worse.
I made the mistake of trying 25,000iu of D3 today and my goodness I feel so sick, and *so much* worse (I take K2 + Magnesium daily already)
onlinelibrary.wiley.com/doi/10.1111/...
I made the mistake of trying 25,000iu of D3 today and my goodness I feel so sick, and *so much* worse (I take K2 + Magnesium daily already)
onlinelibrary.wiley.com/doi/10.1111/...
Effects of an 8‐week high‐dose vitamin D supplementation on fatigue and neuropsychiatric manifestations in post‐COVID syndrome: A randomized controlled trial
Aim This study evaluated the effectiveness of high-dose vitamin D supplementation in alleviating fatigue and neuropsychiatric symptoms in post-COVID syndrome. Methods In an 8-week, double-blind, r...
onlinelibrary.wiley.com
February 16, 2025 at 12:30 PM
It’s an interesting study with levels that look totally crazy until you realise it’s a weekly dose rather than a daily one.
But as usual with ME, going slowly helps
But as usual with ME, going slowly helps
Reposted by Sabine
A shock to no-one*: disability benefits are net positive for economy, society.
www.bigissue.com/news/social-...
*Besides right wingers, 'centrists', Rachel Reeves and Labour.
#PIP #UniversalCredit #BenefitsBritain #DWP #UKLabour
www.bigissue.com/news/social-...
*Besides right wingers, 'centrists', Rachel Reeves and Labour.
#PIP #UniversalCredit #BenefitsBritain #DWP #UKLabour
Disability benefits system actually good for the economy, economists say
Disability benefits have a positive impact on people's wellbeing which outweighs the cost of administering them, economists have found.
www.bigissue.com
January 28, 2025 at 11:13 AM
A shock to no-one*: disability benefits are net positive for economy, society.
www.bigissue.com/news/social-...
*Besides right wingers, 'centrists', Rachel Reeves and Labour.
#PIP #UniversalCredit #BenefitsBritain #DWP #UKLabour
www.bigissue.com/news/social-...
*Besides right wingers, 'centrists', Rachel Reeves and Labour.
#PIP #UniversalCredit #BenefitsBritain #DWP #UKLabour
Reposted by Sabine
I'm feeling quite pleased with myself because I finished a short story this morning. I don't know whether it's any good, but it's nice to have finished something.
#writingCommunity #writing
#writingCommunity #writing
January 28, 2025 at 11:15 AM
I'm feeling quite pleased with myself because I finished a short story this morning. I don't know whether it's any good, but it's nice to have finished something.
#writingCommunity #writing
#writingCommunity #writing
Reposted by Sabine
It can be frustrating if something you've written isn't really working out and it's not as good as you thought it was going to be, but no writing is wasted because it's all practice.
#WritingCommunity #AuthorSky
#WritingCommunity #AuthorSky
January 28, 2025 at 12:29 PM
It can be frustrating if something you've written isn't really working out and it's not as good as you thought it was going to be, but no writing is wasted because it's all practice.
#WritingCommunity #AuthorSky
#WritingCommunity #AuthorSky
A really good article on the review of the Cochrane article on ME
January 29, 2025 at 3:07 PM
A really good article on the review of the Cochrane article on ME
Reposted by Sabine
Remember: ‘liking’ a post has no effect on its visibility here (unlike on Twitter).
To help good or informative posts get seen by other people, you have you repost them.
This feels like a big part of why it can often feel so quite here.
To help good or informative posts get seen by other people, you have you repost them.
This feels like a big part of why it can often feel so quite here.
January 22, 2025 at 1:04 PM
Remember: ‘liking’ a post has no effect on its visibility here (unlike on Twitter).
To help good or informative posts get seen by other people, you have you repost them.
This feels like a big part of why it can often feel so quite here.
To help good or informative posts get seen by other people, you have you repost them.
This feels like a big part of why it can often feel so quite here.
Reposted by Sabine
Pls DM me names of any solicitors or barristers who are able to handle cases with medical issues arising on V Severe ME (such as tackling inappropriate safeguarding against carers, or psychologising) 🙏🏻
@actionforme.bsky.social @swastrosarah.bsky.social @nicolajeffery.bsky.social
@actionforme.bsky.social @swastrosarah.bsky.social @nicolajeffery.bsky.social
January 22, 2025 at 10:45 AM
Pls DM me names of any solicitors or barristers who are able to handle cases with medical issues arising on V Severe ME (such as tackling inappropriate safeguarding against carers, or psychologising) 🙏🏻
@actionforme.bsky.social @swastrosarah.bsky.social @nicolajeffery.bsky.social
@actionforme.bsky.social @swastrosarah.bsky.social @nicolajeffery.bsky.social
Reposted by Sabine
The #FUNCAP for patients diagnosed with #MECFS is now available as a free app for iphone: Self-evaluate, track and record your FUNctional CAPacity and your degrees of #PEM: apps.apple.com/app/funcap/i... @tschei.bsky.social 💙🫂💙
FUNCAP
- For patients diagnosed with ME/CFS
- Self-evaluate and record your FUNctional CAPacity
- Assess your capacity using FUNCAP55 or FUNCAP27 by scoring questions across 8 domains, eg
apps.apple.com
December 12, 2024 at 3:42 AM
The #FUNCAP for patients diagnosed with #MECFS is now available as a free app for iphone: Self-evaluate, track and record your FUNctional CAPacity and your degrees of #PEM: apps.apple.com/app/funcap/i... @tschei.bsky.social 💙🫂💙
Reposted by Sabine
Many of us here knew Debbie on Twitter back when she was able to use her phone to communicate. Sadly, she lost that ability a few years ago now.
We mustn’t forget Debbie & those like her, who lie both unseen & unheard in darkened rooms 💔 😪 #MillionsMissing #MEcfs #LongCovid
t.co/8NtrsI3S6C
We mustn’t forget Debbie & those like her, who lie both unseen & unheard in darkened rooms 💔 😪 #MillionsMissing #MEcfs #LongCovid
t.co/8NtrsI3S6C
https://www.bbc.com/news/articles/c86w32en1evo
t.co
December 11, 2024 at 2:28 PM
Many of us here knew Debbie on Twitter back when she was able to use her phone to communicate. Sadly, she lost that ability a few years ago now.
We mustn’t forget Debbie & those like her, who lie both unseen & unheard in darkened rooms 💔 😪 #MillionsMissing #MEcfs #LongCovid
t.co/8NtrsI3S6C
We mustn’t forget Debbie & those like her, who lie both unseen & unheard in darkened rooms 💔 😪 #MillionsMissing #MEcfs #LongCovid
t.co/8NtrsI3S6C
Reposted by Sabine
A story I have never told—in 2020, when my wife and I were both very sick with covid, a stranger, a mum from our kids' nursery, offered to look after our (covid-positive) kids if my wife and I were both incapacitated in hospital. Her offer and the email she wrote have stuck with me ever since.
December 10, 2024 at 12:59 PM
A story I have never told—in 2020, when my wife and I were both very sick with covid, a stranger, a mum from our kids' nursery, offered to look after our (covid-positive) kids if my wife and I were both incapacitated in hospital. Her offer and the email she wrote have stuck with me ever since.
Reposted by Sabine
ME Research UK:
PhD student @tinakatsaros.bsky.social who is working on research funded by MERUK, has organised a festive online event which will take place from to the 20th – 25th of December, and use the social media hashtag #SpendChristmasWithME. Find out more: tinyurl.com/4z2uc3ta
#MECFS #CFS
PhD student @tinakatsaros.bsky.social who is working on research funded by MERUK, has organised a festive online event which will take place from to the 20th – 25th of December, and use the social media hashtag #SpendChristmasWithME. Find out more: tinyurl.com/4z2uc3ta
#MECFS #CFS
December 3, 2024 at 3:03 PM
ME Research UK:
PhD student @tinakatsaros.bsky.social who is working on research funded by MERUK, has organised a festive online event which will take place from to the 20th – 25th of December, and use the social media hashtag #SpendChristmasWithME. Find out more: tinyurl.com/4z2uc3ta
#MECFS #CFS
PhD student @tinakatsaros.bsky.social who is working on research funded by MERUK, has organised a festive online event which will take place from to the 20th – 25th of December, and use the social media hashtag #SpendChristmasWithME. Find out more: tinyurl.com/4z2uc3ta
#MECFS #CFS
Reposted by Sabine
ME Research UK:
Drs Nuno Sepúlveda Francisco Westermeier – researchers who have previously worked on projects funded by ME Research UK, have written a letter to the editor of Journal of Infection in response to a recently published systematic review
tinyurl.com/4y7wz9ev
#LongCovid #MEcfs #CFS #PwME
Drs Nuno Sepúlveda Francisco Westermeier – researchers who have previously worked on projects funded by ME Research UK, have written a letter to the editor of Journal of Infection in response to a recently published systematic review
tinyurl.com/4y7wz9ev
#LongCovid #MEcfs #CFS #PwME
December 3, 2024 at 2:52 PM
ME Research UK:
Drs Nuno Sepúlveda Francisco Westermeier – researchers who have previously worked on projects funded by ME Research UK, have written a letter to the editor of Journal of Infection in response to a recently published systematic review
tinyurl.com/4y7wz9ev
#LongCovid #MEcfs #CFS #PwME
Drs Nuno Sepúlveda Francisco Westermeier – researchers who have previously worked on projects funded by ME Research UK, have written a letter to the editor of Journal of Infection in response to a recently published systematic review
tinyurl.com/4y7wz9ev
#LongCovid #MEcfs #CFS #PwME
The person impersonating Eric started to follow me too.
I would have fallen for it without the warning
I would have fallen for it without the warning
please note an account is impersonating me @erctopol.bluesky.social and has been reported to @support.bsky.team @bsky.app
my account is @erictopol.bsky.social
my account is @erictopol.bsky.social
December 2, 2024 at 7:54 PM
The person impersonating Eric started to follow me too.
I would have fallen for it without the warning
I would have fallen for it without the warning
If you have the time or the spoons, please sign
A protocol for very severe ME patients is essential to ensure good care (and no more death)
A protocol for very severe ME patients is essential to ensure good care (and no more death)
December 2, 2024 at 10:14 AM
If you have the time or the spoons, please sign
A protocol for very severe ME patients is essential to ensure good care (and no more death)
A protocol for very severe ME patients is essential to ensure good care (and no more death)
Reposted by Sabine
Discriminating #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome and comorbid conditions using metabolomics in UK Biobank
Free fulltext:
www.nature.com/articles/s43...
#MEcfs #CFS #PwME
Free fulltext:
www.nature.com/articles/s43...
#MEcfs #CFS #PwME
November 26, 2024 at 1:10 PM
Discriminating #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome and comorbid conditions using metabolomics in UK Biobank
Free fulltext:
www.nature.com/articles/s43...
#MEcfs #CFS #PwME
Free fulltext:
www.nature.com/articles/s43...
#MEcfs #CFS #PwME
An amazing paper.
All thanks to ME and LC sufferers.
From those who answered the surveys to those who wrote the paper.
🎉🎉 to patient led research
All thanks to ME and LC sufferers.
From those who answered the surveys to those who wrote the paper.
🎉🎉 to patient led research
Oh this is exciting to see!
This whole project was started and run by LC/ME patient and PharmD Martha Eckey, most of you know her as LongCovidPharmD
I helped screen & edit the early versions if the survey, which was v long but comprehensive!
1000’s of you took part!
This whole project was started and run by LC/ME patient and PharmD Martha Eckey, most of you know her as LongCovidPharmD
I helped screen & edit the early versions if the survey, which was v long but comprehensive!
1000’s of you took part!
Patient-Reported Treatment Outcomes in ME/CFS and Long COVID https://www.medrxiv.org/content/10.1101/2024.11.27.24317656v1
December 1, 2024 at 12:43 PM
An amazing paper.
All thanks to ME and LC sufferers.
From those who answered the surveys to those who wrote the paper.
🎉🎉 to patient led research
All thanks to ME and LC sufferers.
From those who answered the surveys to those who wrote the paper.
🎉🎉 to patient led research
The thing is pacing is very much about not crashing, aka lowering your baseline/getting worse.
For some people, it might also help recovering but that’s not the aim of pacing.
Makes you wonder why they did the study in the first place….
For some people, it might also help recovering but that’s not the aim of pacing.
Makes you wonder why they did the study in the first place….
🚨 Pacing for #ME/CFS 🚨
“There is insufficient evidence to conclude that pacing exerts a positive effect in people with ME/CFS for physical function, pain, and fatigue; although pacing may reduce fatigue in ME/CFS patients”
#medsky #physiosky
www.tandfonline.com/doi/full/10....
“There is insufficient evidence to conclude that pacing exerts a positive effect in people with ME/CFS for physical function, pain, and fatigue; although pacing may reduce fatigue in ME/CFS patients”
#medsky #physiosky
www.tandfonline.com/doi/full/10....
‘Pacing’ for management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): a systematic review and meta-analysis
Pacing typically comprises regulating activity to avoid post-exertional neuroimmune exhaustion, the worsening of symptoms after an activity. Yet, the efficacy of pacing to improve symptomology is u...
www.tandfonline.com
November 30, 2024 at 9:20 PM
The thing is pacing is very much about not crashing, aka lowering your baseline/getting worse.
For some people, it might also help recovering but that’s not the aim of pacing.
Makes you wonder why they did the study in the first place….
For some people, it might also help recovering but that’s not the aim of pacing.
Makes you wonder why they did the study in the first place….
A really important news
LC isn’t FND!
(Yes we knew but you know…)
LC isn’t FND!
(Yes we knew but you know…)
Long Covid isn’t FND. Pass it on. www.mdpi.com/2075-4426/14...
Long COVID Is Not a Functional Neurologic Disorder
Long COVID is a common sequela of SARS-CoV-2 infection. Data from numerous scientific studies indicate that long COVID involves a complex interaction between pathophysiological processes. Long COVID m...
www.mdpi.com
November 26, 2024 at 9:03 AM
A really important news
LC isn’t FND!
(Yes we knew but you know…)
LC isn’t FND!
(Yes we knew but you know…)
Reposted by Sabine
L'#EMSFC est en *article à la une " sur le Wikipédia en anglais ! Et en plus l'article est très complet !
Today's featured article on Wikipedia is on #MECFS
"The hallmark symptom is a worsening of the illness which starts hours to days after minor physical or mental activity, and lasts from hours to several months...People with ME/CFS often face stigma in healthcare settings.."
Mentions #LongCovid too
"The hallmark symptom is a worsening of the illness which starts hours to days after minor physical or mental activity, and lasts from hours to several months...People with ME/CFS often face stigma in healthcare settings.."
Mentions #LongCovid too
November 25, 2024 at 7:32 PM
L'#EMSFC est en *article à la une " sur le Wikipédia en anglais ! Et en plus l'article est très complet !
The entry in Wiki for ME/CFS actually makes sense!
🎉🎉🎉
In some ways, a big victory as it is putting ME as a severe illness in a prominent place.
🎉🎉🎉
In some ways, a big victory as it is putting ME as a severe illness in a prominent place.
Today’s featured article on Wikipedia’s homepage is the ME/CFS entry!
If you’re not familiar with ME/CFS, this is a great overview of a debilitating condition very commonly triggered by Covid.
en.wikipedia.org/wiki/Myalgic...
If you’re not familiar with ME/CFS, this is a great overview of a debilitating condition very commonly triggered by Covid.
en.wikipedia.org/wiki/Myalgic...
November 25, 2024 at 1:49 PM
The entry in Wiki for ME/CFS actually makes sense!
🎉🎉🎉
In some ways, a big victory as it is putting ME as a severe illness in a prominent place.
🎉🎉🎉
In some ways, a big victory as it is putting ME as a severe illness in a prominent place.
Reposted by Sabine
I’m proud to be woke af, because this is the true meaning of being a selfless member of society!
November 24, 2024 at 3:55 PM
I’m proud to be woke af, because this is the true meaning of being a selfless member of society!
Reposted by Sabine
A wonderful resource, full of covid research. www.zotero.org/groups/50061...
Zotero | Your personal research assistant
www.zotero.org
November 24, 2024 at 12:23 PM
A wonderful resource, full of covid research. www.zotero.org/groups/50061...