Medical Uncertainty
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med-uncertainty.bsky.social
Medical Uncertainty
@med-uncertainty.bsky.social
120 followers 320 following 17 posts
Research project on experiences of medical uncertainty in Fibromyalgia, ME/CFS, Long Covid and Chemobrain. Hosted at @manchstm.bsky.social / University of Manchester, funded by the Wellcome Trust
https://t.ly/CYJ7V
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Reposted by Medical Uncertainty
dalupton.bsky.social
The BBC has covered our study on medical power and #LongCovid. It’s a shame they didn’t name me and got my university name wrong, but nonetheless, good to see some MSM attention

www.bbc.com/news/article...
Long Covid patients gaslit by GPs, Surrey study finds
The University of Surrey study says patients faced "gatekeeping" of medical treatment from doctors.
www.bbc.com
August 22, 2025 at 10:51 PM
Reposted by Medical Uncertainty
irishtimes.com
ME/CFS: is there a comprehensive explanation for this long-misunderstood illness?
ME/CFS: is there a comprehensive explanation for this long-misunderstood illness?
Author Patrick Ussher undertook to understand the latest research in order to cope with his daunting health challenge
www.irishtimes.com
June 4, 2025 at 5:00 AM
med-uncertainty.bsky.social
"Sense’s research found that half of disabled people with complex needs who’ve been through a benefits assessment found it humiliating."

www.theguardian.com/society/2025...
US firm that tests eligibility for UK disability benefits pays £10m in dividends
British arm of Maximus, which provides DWP assessments, reports a 23% rise in pre-tax profit in annual figures
www.theguardian.com
May 29, 2025 at 7:58 AM
Reposted by Medical Uncertainty
peterstefanovic.bsky.social
Amnesty International's new research, which involves interviews with hundreds of people on benefits, claims the current welfare system is 'consciously cruel' and ruining lives

www.mirror.co.uk/news/politic...
DWP claimants give verdict on welfare system - 'You're not treated as human'
Amnesty International's new research, which involves interviews with hundreds of people on benefits, claims the current welfare system is 'consciously cruel' and ruining lives
www.mirror.co.uk
April 26, 2025 at 7:22 AM
med-uncertainty.bsky.social
"These new powers strip those who receive state support of a fundamental principle of British law: the presumption of innocence. By default, welfare recipients would be treated as suspects, simply because they need support from the state."

www.theguardian.com/commentisfre...
Should benefit claimants risk having their bank accounts spied upon and driving licences revoked? I don’t think so | Neil Duncan-Jordan
MPs like me are horrified by proposals to treat vulnerable people as suspects simply because they need state support, says Neil Duncan-Jordan, the Labour MP for Poole
www.theguardian.com
April 25, 2025 at 3:42 PM
Reposted by Medical Uncertainty
manchstm.bsky.social
27 May 2025: Prof Mark Harrison (Oxford), Protest and Identity Formation in the Time of Covid: The UK in Historical Context

blogs.manchester.ac.uk/chstm/2025/0...
CHSTM Research Seminar, 27 May 2025
Professor Mark Harrison (University of Oxford) Protest and Identity Formation in the Time of Covid: The UK in Historical Context
blogs.manchester.ac.uk
April 23, 2025 at 8:11 AM
med-uncertainty.bsky.social
"More than 150,000 more people in England are living with chronic fatigue syndrome (CFS) than was previously estimated, according to a study that highlights the “postcode lottery” of diagnosis."

www.theguardian.com/society/2025...
Over 150,000 more people in England have ME than previously thought, study finds
Research into myalgic encephalomyelitis or chronic fatigue syndrome also reveals diagnosis ‘postcode lottery’
www.theguardian.com
April 22, 2025 at 4:56 PM
Reposted by Medical Uncertainty
med-uncertainty.bsky.social
An article in @theconversation.com from a few months ago on the gendered nature of fibromyalgia and on how this makes diagnosis in men more complicated

theconversation.com/fibromyalgia...
Fibromyalgia: Why is this common, debilitating condition being ignored in male patients?
Male sufferers are often met with a lack of empathy, or just ignored completely.
theconversation.com
April 17, 2025 at 8:24 AM
med-uncertainty.bsky.social
An article in @theconversation.com from a few months ago on the gendered nature of fibromyalgia and on how this makes diagnosis in men more complicated

theconversation.com/fibromyalgia...
Fibromyalgia: Why is this common, debilitating condition being ignored in male patients?
Male sufferers are often met with a lack of empathy, or just ignored completely.
theconversation.com
April 17, 2025 at 8:24 AM
Reposted by Medical Uncertainty
themedicalpost.bsky.social
Not just a bit of ‘chemobrain’: Barriers persist to treating cancer-related cognitive impairment

Urgent need for a tailored screening panel for patients with CRCI, as typical formal neurocognitive testing was developed for very different situations. #medsky
Not just a bit of ‘chemobrain’: Barriers persist to treating cancer-related cognitive impairment
Urgent need for a tailored screening panel for patients with CRCI, as typical formal neurocognitive testing was developed for very different situations.
canadianhealthcarenetwork.ca
April 9, 2025 at 12:32 PM
Reposted by Medical Uncertainty
thesicktimes.org
In this episode of Still Here: @jewstein3000.bsky.social talks about the nuance of tilt table testing; Sam Pearce on her appeal to ME and LC organizations to create an international task force centered on Severe ME and Long COVID crisis cases; and more!

🎧 Listen, like, subscribe! bit.ly/4ihyHMX
A purple background with white text and lavender accents features an illustration of a white Caladrius wearing yellow headphones. The text reads, “The problem is, if [doctors] just listened to us and believed us in the first place, they wouldn’t need us to keep proving ourselves... When the system is designed to not believe you until you can actually prove yourself, that’s a bad system. And it’s not a patient-centered system. - Justine Barron, author and reporter”
April 12, 2025 at 3:34 PM
Reposted by Medical Uncertainty
meassociation.org.uk
The ME Association hosts a wealth of free information for people with ME/CFS, from downloadable booklets: https://meassociation.org.uk/fdwc

To Medical Matters, a database of members questions answered by Dr Charles Shepherd, MEA Hon. Medical Advisor: https://meassociation.org.uk/medm

#MECFS #pwME
IMAGE DESCRIPTION: Collage of images taken from our free information booklets. Wording: We have a wide range of free resources available to download.
April 11, 2025 at 1:02 PM
Reposted by Medical Uncertainty
openmedf.bsky.social
🩺 Knowledge Shared, Lives Changed!

For decades, people with #MECFS have struggled to find informed care. That’s why Bateman Horne Center & Open Medicine Foundation created MERC—to train doctors, improve diagnoses, and create lasting change.

#MedicalEducation @batemanhornecenter.bsky.social
"KNOWLEDGE SHARED. LIVES CHANGED."Beneath the text is an illustration of five healthcare professionals, each wearing medical attire and holding tools or documents associated with their profession (like a stethoscope, clipboard, or chart). This second image provides key accomplishments of the MERC Program: Reached 15,000+ healthcare professionals, Across 29 medical disciplines, Taught at major institutions such as University of Rochester Medical Center, Stanford, NIH RECOVER Program.
April 11, 2025 at 4:11 PM
med-uncertainty.bsky.social
“overdiagnosis” is a politically convenient idea at a time when squeezing benefits spending is a priority and when the more ingrained determinants of mental health are difficult to fix.

www.theguardian.com/society/2025...
Does the UK have a mental health overdiagnosis problem?
Mental ill health has been cited as a factor in the welfare overhaul, and experts agree it has worsened since the pandemic
www.theguardian.com
April 5, 2025 at 5:09 PM
med-uncertainty.bsky.social
"When was the last time you heard a politician utter the words “long Covid”? Or saw calls for research or support for sufferers make the front pages? In 2025, long Covid is the public health crisis no one wants to talk about"

www.theguardian.com/commentisfre...
Long Covid is the pandemic’s dark shadow. Why does no one in power in Britain want to talk about it? | Frances Ryan
Five years after the first lockdown, millions of lives are still being ruined by this debilitating disease. You wouldn’t know it, says Guardian columnist Frances Ryan
www.theguardian.com
March 17, 2025 at 8:32 AM
med-uncertainty.bsky.social
"The UK spent more money than most other countries on economic help yet still ended up with larger drops in life expectancy, more people too sick to work, huge levels of homelessness and soaring mental health problems among young people"

www.theguardian.com/world/2025/m...
Five years on: Britons among hardest hit by Covid fallout
Life expectancy, homelessness and young people’s mental health were among the areas where Britain performed poorly despite spending more than other countries
www.theguardian.com
March 8, 2025 at 7:45 PM
med-uncertainty.bsky.social
"One of the main challenges in diagnosing and treating long Covid is its unpredictability: research studies have linked it to more than 200 symptoms affecting every part of the body."

www.theguardian.com/society/2025...
‘We’re losing decades of our life to this illness’: long Covid patients on the fear of being forgotten
Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic neve...
www.theguardian.com
March 2, 2025 at 9:43 AM
Reposted by Medical Uncertainty
cinziag.bsky.social
Our project, Multi-layered Medical Uncertainty, now has a bsky profile! 🎉
Follow us for news and updates, and if you want to know more, please do get in touch!
med-uncertainty.bsky.social Medical Uncertainty @med-uncertainty.bsky.social · Oct 25
We are exploring experiences of medical uncertainty in relation to fibromyalgia, myalgic encephalomyelitis (ME)/chronic fatigue syndrome, long COVID and chemo-brain. We are working with patients, doctors and researchers to transform medical perceptions of these conditions.
October 25, 2024 at 12:30 PM
Reposted by Medical Uncertainty
cinziag.bsky.social
My @manchstm.bsky.social colleague Sally Cross has reviewed @lisadiedrich.bsky.social 's book "Illness Politics and Hashtag Activism" in Sociology of Health & Illness (looking forward to reading the book myself!)

onlinelibrary.wiley.com/doi/10.1111/...
Illness Politics and Hashtag Activism. By L. Diedrich, Minnesota: University of Minnesota Press, 2024. 150 pp. $10 (paperback); $4.95 (ebook). ISBN: 978‐1‐45297122‐3
Click on the article title to read more.
onlinelibrary.wiley.com
February 12, 2025 at 5:55 PM
Reposted by Medical Uncertainty
georgemonbiot.bsky.social
1. If Trump runs out of immigrants to persecute, I suspect the next target for his performative sadism will be people with disabilities. Already, without a shred of evidence, he has blamed the air crash on disabled air traffic controllers, with horrible, stereotyping slurs about their disabilities.🧵
February 1, 2025 at 8:34 AM
Reposted by Medical Uncertainty
theskylark.bsky.social
This looks like an interesting project to follow, via @cinziag.bsky.social.
med-uncertainty.bsky.social Medical Uncertainty @med-uncertainty.bsky.social · Oct 25
We are exploring experiences of medical uncertainty in relation to fibromyalgia, myalgic encephalomyelitis (ME)/chronic fatigue syndrome, long COVID and chemo-brain. We are working with patients, doctors and researchers to transform medical perceptions of these conditions.
January 26, 2025 at 8:42 AM
Reposted by Medical Uncertainty
violetblue.bsky.social
Heads-up: Guardian is looking for firsthand #LongCovid stories: www.theguardian.com/society/2025...
Share your experience of long Covid
We’d like to hear from people who have long Covid and how it has affected their lives
www.theguardian.com
January 15, 2025 at 9:50 PM
Reposted by Medical Uncertainty
tomkindlon.bsky.social
2/
“(Contd) Here nine people reveal the devastating difficulties the condition brings – including their struggles to be believed by medics, to get a diagnosis, to access support, & simply to keep going."

Portraits & interviews
wellcomecollection.org/stories/livi...

#MEcfs #CFS #PwME
Living with ME
Nine people with ME reveal their unremitting struggles as they negotiate life with their illness, including their battles to be believed, diagnosed and supported.
wellcomecollection.org
December 1, 2024 at 3:46 PM
Reposted by Medical Uncertainty
andrewgiffordphoto.bsky.social
Starter pack to help find people making art / photos / music / creative writing etc. about ME/CFS and Long Covid.

go.bsky.app/L4KNTrs

It's in its infancy, so please recommend away re who else should be included, thanks!

#MECFS #LongCovid #Art #Photography #Creativity #Writing #pwME #LongHauler
November 8, 2024 at 6:29 PM
med-uncertainty.bsky.social
"The authors, looking at the issue from an economic perspective, noted that “acute Covid is a pandemic; long Covid could be a mass disabling event”"

Devi Sridhar on the risks of neglecting #LongCovid
Britain has closed its eyes to long Covid – which means it will ravage even more lives and livelihoods | Devi Sridhar
Unlike the US, Canada and Australia, the UK is only giving free boosters to some. But the cost of restricting them could be huge, says Devi Sridhar of Edinburgh University
www.theguardian.com
October 30, 2024 at 11:04 AM