Jo Claire
@joclaire.bsky.social
In a recliner by my bed.
Thx ME/CFS, Long Covid.
Following through the haze.
I used to translate complex statistics & data science into plain English.
Now I struggle to articulate simple thoughts.
Artist.
(Claire, @canary_boots from twitter, she/her)
Thx ME/CFS, Long Covid.
Following through the haze.
I used to translate complex statistics & data science into plain English.
Now I struggle to articulate simple thoughts.
Artist.
(Claire, @canary_boots from twitter, she/her)
Pinned
Reposted by Jo Claire
The #ME Association, a national organisation, has been dominated by this man so long it's transformed into a mental health charity.
ME is not a mental illness.
I wasted months meeting MEA reps (Trustees & employees) pre inquest. 2/3 resigned after listening to me.
thesicktimes.org/2024/11/22/a...
ME is not a mental illness.
I wasted months meeting MEA reps (Trustees & employees) pre inquest. 2/3 resigned after listening to me.
thesicktimes.org/2024/11/22/a...
Advocacy groups suspend ties with U.K. charity The ME Association over chairman’s op-ed - The Sick Times
Earlier this month, the chairman of the United Kingdom charity the ME Association, Neil Riley, published a controversial op-ed in the charity’s magazine arguing that many people with Myalgic Encephalo...
thesicktimes.org
November 27, 2024 at 10:41 AM
The #ME Association, a national organisation, has been dominated by this man so long it's transformed into a mental health charity.
ME is not a mental illness.
I wasted months meeting MEA reps (Trustees & employees) pre inquest. 2/3 resigned after listening to me.
thesicktimes.org/2024/11/22/a...
ME is not a mental illness.
I wasted months meeting MEA reps (Trustees & employees) pre inquest. 2/3 resigned after listening to me.
thesicktimes.org/2024/11/22/a...
Reposted by Jo Claire
Incredibly grateful to Simon for writing about these dangerous Long Covid guidelines.
Make no mistake - these recommendations WILL harm patients. They will also make it harder for people to access disability supports.
We must to push back & ensure patients get the care they need & deserve
Make no mistake - these recommendations WILL harm patients. They will also make it harder for people to access disability supports.
We must to push back & ensure patients get the care they need & deserve
Canada's proposed Long COVID recommendations (CAN-PCC) pose harm to patients.
I spoke with experts + advocates including @sunsopeningband.bsky.social, Adriana Patino, @sabrinapoirier.bsky.social to breakdown why.
#pwME #LongCOVID #CanadaSky
simonspichak.beehiiv.com/p/everything...
I spoke with experts + advocates including @sunsopeningband.bsky.social, Adriana Patino, @sabrinapoirier.bsky.social to breakdown why.
#pwME #LongCOVID #CanadaSky
simonspichak.beehiiv.com/p/everything...
Everything Wrong with Canada's Proposed Long COVID Recommendations
The proposed Canadian guidelines for treating Long COVID pose harm to patients and risk psychologizing the disease.
simonspichak.beehiiv.com
November 26, 2024 at 3:47 AM
Incredibly grateful to Simon for writing about these dangerous Long Covid guidelines.
Make no mistake - these recommendations WILL harm patients. They will also make it harder for people to access disability supports.
We must to push back & ensure patients get the care they need & deserve
Make no mistake - these recommendations WILL harm patients. They will also make it harder for people to access disability supports.
We must to push back & ensure patients get the care they need & deserve
Reposted by Jo Claire
@meassociation.bsky.social epic failure to listen to the community continues. 1k people signed a letter demanding accountability for publishing insulting misinformation editorial from Chair. They call this “The few baying for blood”
MEA can’t help but show contempt for the ME community.
#pwME
MEA can’t help but show contempt for the ME community.
#pwME
November 26, 2024 at 6:08 AM
@meassociation.bsky.social epic failure to listen to the community continues. 1k people signed a letter demanding accountability for publishing insulting misinformation editorial from Chair. They call this “The few baying for blood”
MEA can’t help but show contempt for the ME community.
#pwME
MEA can’t help but show contempt for the ME community.
#pwME
Reposted by Jo Claire
Quoting to amplify. Thanks for your work on this and for taking the time to speak with me about it, @spichaksimon.bsky.social. Needless to say, these evidence-based guidelines…are neither evidence based nor soundly worded guidance. @longcovidphysio.bsky.social @workwellfoundation.bsky.social
Canada's proposed Long COVID recommendations (CAN-PCC) pose harm to patients.
I spoke with experts + advocates including @sunsopeningband.bsky.social, Adriana Patino, @sabrinapoirier.bsky.social to breakdown why.
#pwME #LongCOVID #CanadaSky
simonspichak.beehiiv.com/p/everything...
I spoke with experts + advocates including @sunsopeningband.bsky.social, Adriana Patino, @sabrinapoirier.bsky.social to breakdown why.
#pwME #LongCOVID #CanadaSky
simonspichak.beehiiv.com/p/everything...
Everything Wrong with Canada's Proposed Long COVID Recommendations
The proposed Canadian guidelines for treating Long COVID pose harm to patients and risk psychologizing the disease.
simonspichak.beehiiv.com
November 26, 2024 at 2:34 AM
Quoting to amplify. Thanks for your work on this and for taking the time to speak with me about it, @spichaksimon.bsky.social. Needless to say, these evidence-based guidelines…are neither evidence based nor soundly worded guidance. @longcovidphysio.bsky.social @workwellfoundation.bsky.social
Reposted by Jo Claire
November 26, 2024 at 3:23 AM
Reposted by Jo Claire
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 3:38 AM
Long Covid isn’t FND. Pass it on. www.mdpi.com/2075-4426/14...
Reposted by Jo Claire
Canada's proposed Long COVID recommendations (CAN-PCC) pose harm to patients.
I spoke with experts + advocates including @sunsopeningband.bsky.social, Adriana Patino, @sabrinapoirier.bsky.social to breakdown why.
#pwME #LongCOVID #CanadaSky
simonspichak.beehiiv.com/p/everything...
I spoke with experts + advocates including @sunsopeningband.bsky.social, Adriana Patino, @sabrinapoirier.bsky.social to breakdown why.
#pwME #LongCOVID #CanadaSky
simonspichak.beehiiv.com/p/everything...
Everything Wrong with Canada's Proposed Long COVID Recommendations
The proposed Canadian guidelines for treating Long COVID pose harm to patients and risk psychologizing the disease.
simonspichak.beehiiv.com
November 25, 2024 at 10:17 PM
Canada's proposed Long COVID recommendations (CAN-PCC) pose harm to patients.
I spoke with experts + advocates including @sunsopeningband.bsky.social, Adriana Patino, @sabrinapoirier.bsky.social to breakdown why.
#pwME #LongCOVID #CanadaSky
simonspichak.beehiiv.com/p/everything...
I spoke with experts + advocates including @sunsopeningband.bsky.social, Adriana Patino, @sabrinapoirier.bsky.social to breakdown why.
#pwME #LongCOVID #CanadaSky
simonspichak.beehiiv.com/p/everything...
Reposted by Jo Claire
"The patient community has been really clear for years that we want to see trials that test real interventions that patients can't access without a doctor's prescription," says [Meighan] Stone.
www.npr.org/sections/sho...
www.npr.org/sections/sho...
November 25, 2024 at 5:28 PM
"The patient community has been really clear for years that we want to see trials that test real interventions that patients can't access without a doctor's prescription," says [Meighan] Stone.
www.npr.org/sections/sho...
www.npr.org/sections/sho...
Reposted by Jo Claire
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 6:04 PM
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
Reposted by Jo Claire
NPR: 'Long COVID patients push to see federal research refocused on treatments'
"It's unconscionable that more than four years since this began, we still don't have one FDA- approved drug," says Meighan Stone, executive director of Long COVID Campaign
www.npr.org/sections/sho...
"It's unconscionable that more than four years since this began, we still don't have one FDA- approved drug," says Meighan Stone, executive director of Long COVID Campaign
www.npr.org/sections/sho...
www.npr.org
November 25, 2024 at 3:29 PM
NPR: 'Long COVID patients push to see federal research refocused on treatments'
"It's unconscionable that more than four years since this began, we still don't have one FDA- approved drug," says Meighan Stone, executive director of Long COVID Campaign
www.npr.org/sections/sho...
"It's unconscionable that more than four years since this began, we still don't have one FDA- approved drug," says Meighan Stone, executive director of Long COVID Campaign
www.npr.org/sections/sho...
Reposted by Jo Claire
Our chronic illness community has lost another member - Prof Gemma Carey has passed away.
Gemma was a fierce advocate for long covid and chronic illness - and an incredibly talented writer.
She was a valuable member of our community and I’m sending tons of love to her family and all who knew her.
Gemma was a fierce advocate for long covid and chronic illness - and an incredibly talented writer.
She was a valuable member of our community and I’m sending tons of love to her family and all who knew her.
November 25, 2024 at 3:30 AM
Our chronic illness community has lost another member - Prof Gemma Carey has passed away.
Gemma was a fierce advocate for long covid and chronic illness - and an incredibly talented writer.
She was a valuable member of our community and I’m sending tons of love to her family and all who knew her.
Gemma was a fierce advocate for long covid and chronic illness - and an incredibly talented writer.
She was a valuable member of our community and I’m sending tons of love to her family and all who knew her.
Reposted by Jo Claire
Gemma was a brilliant writer and a beautiful human who tried to help any chronic illness patient who reached out
Her piece on raising kids during COVID was particularly poignant.
This article serves as a reminder not to bully our allies - she was attacked for the headline despite not choosing it:
Her piece on raising kids during COVID was particularly poignant.
This article serves as a reminder not to bully our allies - she was attacked for the headline despite not choosing it:
archive.ph
November 25, 2024 at 4:21 AM
Gemma was a brilliant writer and a beautiful human who tried to help any chronic illness patient who reached out
Her piece on raising kids during COVID was particularly poignant.
This article serves as a reminder not to bully our allies - she was attacked for the headline despite not choosing it:
Her piece on raising kids during COVID was particularly poignant.
This article serves as a reminder not to bully our allies - she was attacked for the headline despite not choosing it:
This.
If you’re someone who is still complaining about temporary stay at home orders and how “awful” it was for you to be isolated - why aren’t you masking or taking Covid precautions?
You’re forcing disabled and high risk people to isolate indefinitely - when you deemed it a fate worse than death.
You’re forcing disabled and high risk people to isolate indefinitely - when you deemed it a fate worse than death.
November 25, 2024 at 4:12 AM
This.
Reposted by Jo Claire
Cincinnati Enquirer: “A long haul with long COVID: Why poor and middle income Americans are hit hardest”
“I can’t tell you how many people are couch surfing or living in cars,” said Delainne Bond, a Florida nurse…
www.cincinnati.com/story/news/2...
“I can’t tell you how many people are couch surfing or living in cars,” said Delainne Bond, a Florida nurse…
www.cincinnati.com/story/news/2...
A long haul with long COVID: Why poor and middle income Americans are hit hardest
Long COVID can strike anyone, rich or poor, but a growing body of evidence suggests poor and middle income Americans like Rick Henline suffer most.
www.cincinnati.com
November 24, 2024 at 4:28 AM
Cincinnati Enquirer: “A long haul with long COVID: Why poor and middle income Americans are hit hardest”
“I can’t tell you how many people are couch surfing or living in cars,” said Delainne Bond, a Florida nurse…
www.cincinnati.com/story/news/2...
“I can’t tell you how many people are couch surfing or living in cars,” said Delainne Bond, a Florida nurse…
www.cincinnati.com/story/news/2...
Reposted by Jo Claire
I will always feel angry & heartbroken when I hear these facts. I've had symptoms & flare ups for over 20 yrs. I've been disbelieved, gaslit, patronised & insulted by GPs & consultants. I was finally diagnosed in July this year. I'm now mostly housebound, disabled & my life destroyed.
#pwME #ME/CFS
#pwME #ME/CFS
Totally professional and rigorously researched this 27 minute film combines the facts with the relevant film clips to back up the evidence that #ME patients have been disbelieved and mistreated for the last 30 years. This video shows one of the main reasons why this is so.
youtu.be/RiwX9Y0NbiQ?...
youtu.be/RiwX9Y0NbiQ?...
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
youtu.be
November 21, 2024 at 2:32 PM
Reposted by Jo Claire
With a fully remote team of just 20 employees, Bluesky has surpassed 20 million users in its first year since opening to the public and is stealing thunder from rivals hundreds of times its size.
At a time when conventional wisdom among bosses is that workers must be in-person to be productive.
At a time when conventional wisdom among bosses is that workers must be in-person to be productive.
November 20, 2024 at 4:16 PM
With a fully remote team of just 20 employees, Bluesky has surpassed 20 million users in its first year since opening to the public and is stealing thunder from rivals hundreds of times its size.
At a time when conventional wisdom among bosses is that workers must be in-person to be productive.
At a time when conventional wisdom among bosses is that workers must be in-person to be productive.
Reposted by Jo Claire
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. They revert to default tropes about exercise rather than listening, or reading up-to-date studies.
There is something at the core of these folks that cannot accept patient narrative as a source of real data. They revert to default tropes about exercise rather than listening, or reading up-to-date studies.
Advocacy alert ‼️ New Canadian draft recommendations for Long Covid are out, & they include concerning guidance to EXERCISE to prevent Long Covid, & to use CBT as a treatment.
Have your say by Wednesday Nov 27 at 8:45 pm Pacific / 11:45 pm Eastern: www.research.net/r/CAN-PCCRec...
Have your say by Wednesday Nov 27 at 8:45 pm Pacific / 11:45 pm Eastern: www.research.net/r/CAN-PCCRec...
November 21, 2024 at 2:17 PM
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. They revert to default tropes about exercise rather than listening, or reading up-to-date studies.
There is something at the core of these folks that cannot accept patient narrative as a source of real data. They revert to default tropes about exercise rather than listening, or reading up-to-date studies.
Reposted by Jo Claire
Please watch & share Dave Tuller‘s excellent #UniteToFight2024 talk on the flaws of the biopsychosocial model, which has far too long done damage to #MECFS patients, and with many researchers repeating the same mistakes for #LongCovid.
Thank you, @davetuller1.bsky.social !
bsky.app/profile/kath...
Thank you, @davetuller1.bsky.social !
bsky.app/profile/kath...
#UniteToFight2024
The talk by David Tuller, Senior Fellow in Public Health & Journalism at UC Berkeley, on #LongCovid researchers repeating the same mistakes as with #MECFS – flawed study designs, overstated results, lack of peer review etc. – is now available with 🇬🇧 subtitles: youtu.be/g6aZX-tuh64
The talk by David Tuller, Senior Fellow in Public Health & Journalism at UC Berkeley, on #LongCovid researchers repeating the same mistakes as with #MECFS – flawed study designs, overstated results, lack of peer review etc. – is now available with 🇬🇧 subtitles: youtu.be/g6aZX-tuh64
David Tuller: How LC researchers are repeating the ME/CFS Biopsychosocial Playbook (Day 2, Block 11)
YouTube video by UniteToFight
youtu.be
November 21, 2024 at 2:54 PM
Please watch & share Dave Tuller‘s excellent #UniteToFight2024 talk on the flaws of the biopsychosocial model, which has far too long done damage to #MECFS patients, and with many researchers repeating the same mistakes for #LongCovid.
Thank you, @davetuller1.bsky.social !
bsky.app/profile/kath...
Thank you, @davetuller1.bsky.social !
bsky.app/profile/kath...
All the posts sound like mush.
Time to sign off - as soon as I logged on - today.
#longcovid #mecfs
Brain fog
This is mush too.
Time to sign off - as soon as I logged on - today.
#longcovid #mecfs
Brain fog
This is mush too.
November 21, 2024 at 2:34 AM
All the posts sound like mush.
Time to sign off - as soon as I logged on - today.
#longcovid #mecfs
Brain fog
This is mush too.
Time to sign off - as soon as I logged on - today.
#longcovid #mecfs
Brain fog
This is mush too.
Reposted by Jo Claire
Good to hear there's a little bit of improvement with Dianna's long covid.
youtube.com/shorts/euCkK...
youtube.com/shorts/euCkK...
Hello from Dianna! - Two years in bed
YouTube video by Physics Girl
youtube.com
November 21, 2024 at 2:07 AM
Good to hear there's a little bit of improvement with Dianna's long covid.
youtube.com/shorts/euCkK...
youtube.com/shorts/euCkK...
Reposted by Jo Claire
#pwME and #LongCovid folks, Miriam writes about us in a sensitive, informed way.
Consider giving her a follow 🙂
👇🏻
Consider giving her a follow 🙂
👇🏻
Hi Everyone! I've been on deadline so haven't had a chance to peruse this new (for me, at least) platform but it looks great and so nice to see familiar faces. I'll start posting more soon. Are we still using hashtags here? If so, as always I'll use #type1diabetes and #healthcare often. Cheers!
November 20, 2024 at 7:43 PM
#pwME and #LongCovid folks, Miriam writes about us in a sensitive, informed way.
Consider giving her a follow 🙂
👇🏻
Consider giving her a follow 🙂
👇🏻
Reposted by Jo Claire
Recommended reading for #pwME & #pwLC: “Thirty Years of Disdain — How HHS and A Group of Psychiatrists Buried Myalgic Encephalomyelitis” by Mary Dimmock & Matthew Lazell-Fairman. Discusses the history of NIH, CDC & HHS's invention & spread the false narratives about M.E. t.co/x6RLFL7au2 #MyalgicE
https://www.dropbox.com/s/bycueauxmh49z4l/Thirty%20Years%20of%20Disdain%20-%20Background.pdf?dl=0
t.co
November 19, 2024 at 11:22 PM
Recommended reading for #pwME & #pwLC: “Thirty Years of Disdain — How HHS and A Group of Psychiatrists Buried Myalgic Encephalomyelitis” by Mary Dimmock & Matthew Lazell-Fairman. Discusses the history of NIH, CDC & HHS's invention & spread the false narratives about M.E. t.co/x6RLFL7au2 #MyalgicE
Reposted by Jo Claire
7/10/24, Prof. Akiko Iwasaki: Immunology of Post-Acute Infection Syndromes'
"I want to highlight the fact that there are many medically unexplained post-acute infection syndromes..after encounters with distinct pathogens. SARS-CoV-2..the newest member"
www.youtube.com/watch?v=Zees...
"I want to highlight the fact that there are many medically unexplained post-acute infection syndromes..after encounters with distinct pathogens. SARS-CoV-2..the newest member"
www.youtube.com/watch?v=Zees...
Prof. Akiko Iwasaki: Immunology of Post-Acute Infection Syndromes (Day 1, Block 5)
YouTube video by UniteToFight
www.youtube.com
November 18, 2024 at 9:54 PM
7/10/24, Prof. Akiko Iwasaki: Immunology of Post-Acute Infection Syndromes'
"I want to highlight the fact that there are many medically unexplained post-acute infection syndromes..after encounters with distinct pathogens. SARS-CoV-2..the newest member"
www.youtube.com/watch?v=Zees...
"I want to highlight the fact that there are many medically unexplained post-acute infection syndromes..after encounters with distinct pathogens. SARS-CoV-2..the newest member"
www.youtube.com/watch?v=Zees...
Reposted by Jo Claire
"So, without their equal participation in our research, we wouldn't be able to make as much progress as we are doing today. So, there are many of these infectious agents that can lead to this post-acute phase of infectious disease, but there are common symptoms that are shared by many."
November 18, 2024 at 9:58 PM
"So, without their equal participation in our research, we wouldn't be able to make as much progress as we are doing today. So, there are many of these infectious agents that can lead to this post-acute phase of infectious disease, but there are common symptoms that are shared by many."
Reposted by Jo Claire
Here’s a screenshot of the article from ME Assocation newsletter.
It was written by the chairman 🙃
It was written by the chairman 🙃
November 18, 2024 at 12:22 AM
Here’s a screenshot of the article from ME Assocation newsletter.
It was written by the chairman 🙃
It was written by the chairman 🙃