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George Monbiot @georgemonbiot.bsky.social · 4d

ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...

Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome

Research could offer hope for ME patients – but some experts urge caution and say more studies needed

www.theguardian.com

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Boo-trino Lab @putrinolab.bsky.social · 15d

A few days out from #UNGA80, I wanted to reflect on the session we took part in and the media responses since. Mount Sinai was one of the 150 organizations that signed the global pledge to advocate for healthy indoor air. The event itself featured four panels of speakers who
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Long Covid Kids @longcovidkids.bsky.social · 17d

We are pleased to confirm that @sammiemc.bsky.social Founder & CEO, LCK, will give evidence to the UK COVID Inquiry on the morning of Wednesday 1st October.

covid19.public-inquiry.uk/hearings/chi...

Children and Young People (Module 8) - Public Hearings - UK Covid-19 Inquiry

The independent public inquiry to examine the Covid-19 pandemic in the UK

covid19.public-inquiry.uk

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Katie J. @kjohnstone.bsky.social · 14d

A legal challenge to force the UK government to fund specialist health services for ME/CFS has 20 hours to go. This seems like a good thing to support, for those who can afford to.
www.crowdjustice.com/case/justice...

NHS care for ME now

Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.

www.crowdjustice.com

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sarah boothby @swastrosarah.bsky.social · 14d

🧵 (long!) justice4me.uk update: sent to donors yesterday: "Having taken legal advice, thanks to your donations, we have instructed our lawyers to proceed with a letter before claim to the Department of Health and Social Care (DHSC). This does not mean there will be a claim (an application to
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NHS care for ME now

Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.

justice4me.uk

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Esther @elhopkins.bsky.social · 15d

And there lies the root of it. The attraction of Reform, telling people bigger problems like COVID and climate change don’t exist. They do and it will just further sink us.

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Dr. Lucky Tran @luckytran.com · 18d

“We are told by leaders that we are the future. But when it comes to the ongoing pandemic, our present is being stolen right in front of our eyes.”

Incredible speech by Violet Affleck who warned about the ongoing dangers of COVID & Long Covid, & advocated for masks and clean air at the UN today!

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sarah boothby @swastrosarah.bsky.social · 23d

Maddened by such callous regard to family life but otherwise never better. #Justice4ME You?
Justice4me.uk

NHS care for ME now

Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.

Justice4me.uk

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Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research) @jefflubellc19.bsky.social · 23d

Our article examining the extent to which people with #hypermobility are at risk of Long COVID was just published in BMJ Public Health, an open access journal. bmjpublichealth.bmj.com/content/3/2/...

Variant connective tissue as a risk factor for long COVID: a case-control study of data from a retrospective online survey of adults in the USA and UK

Introduction This study explored the extent to which two measures of joint hypermobility, a marker of variant connective tissue, predict the development of long COVID after COVID-19 infection, and whe...

bmjpublichealth.bmj.com

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Katie As @katieas.bsky.social · 23d

I know it’s been criticised heavily but this sounds worse than I thought. I have to admit I’ve been following along with my eyes half covered. It doesn’t feel safe in this form.

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Long Covid Advocacy @longcovidadvoc.com · 26d

🙏Thank you to Chronic Living Therapy for writing this important open letter to BACP about their article about gaslighting that included controversial:

👉 mind-body therapies
👉 trauma based theory
👉 neuroplasticity

LCA have co-signed
📃👇
chroniclivingtherapy.com/open-letter-...

Open Letter to BACP magazine, Therapy Today - Chronic Living Therapy

A recent article in the magazine for members of the British Association of Counselling & Psychotherapy (BACP) has highlighted again the need for research, factual investigation and informed debate abo...

chroniclivingtherapy.com

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Katie As @katieas.bsky.social · Sep 12

www.thecanary.co/global/world...
Wow, Doreen Lawrence is still fighting for justice. May this time be successful. @thecanaryuk.bsky.social

College of Policing opens new investigation into Stephen Lawrence murder, as his mother issues plea for witnesses

Stephen Lawrence's mother, Doreen, pleads for witnesses to her son's murder to finally bring justice for her family

www.thecanary.co

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Steve Fifield @stevefifield.bsky.social · Sep 12

BBC article today featuring @jeremy-jeffs.bsky.social story and exhibition about chronic illness’ especially #pwME.
Shame about the “Chronic Fatigue” headline (could it even be a policy to do this every time?), but otherwise very good 👍
www.bbc.co.uk/news/article...

Cumbrian farmer's chronic fatigue captured in photos

Andrew Jackson lives with ME and continues to work on his farm near Penrith.

www.bbc.co.uk

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Katie As @katieas.bsky.social · Sep 11

Indeed. It’s incredibly disabling and I find cognitive exertion causes adrenaline surges and therefore PEM really easily, particularly speaking in real time or anything complex.

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Anne Marie @annemarie1.bsky.social · Sep 11

🚨NEW REPORT🚨
Huge increase in UK sickness absence.
The Health & Wellbeing Report 2025 found we now have record levels of sickness. Now 9.4 days per employee.
What happened in 2020?
A 35 page long report: guess what it doesn't mention as an ongoing cause of employee sickness?

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Katie As @katieas.bsky.social · Sep 11

Mind you covid does seem to cause lasting brain damage, and there is evidence of brainstem damage in ME. Whether that’s “dementia” is another thing. We definitely need more research on the neurology.

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Katie As @katieas.bsky.social · Sep 11

Yes the processing speed and inability to multi task (eg think who noise happening) affects how much goes in in the first place. I’ve felt v scared like I had dementia at times, maybe due to drug side effects, maybe illness, but overall it has varied and I think “it’s dementia” is simplistic.

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Esther @elhopkins.bsky.social · Sep 11

It wouldn’t have changed if Covid wasn’t airborne. Yet hospitals and schools are still telling children to wash hands for a predominantly airborne virus. Huge disparity here. Please will journalists pick up this story! www.bohs.org/app/uploads/...

www.bohs.org

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Katie As @katieas.bsky.social · Sep 11

I’d have jumped a little bit whatever it was, I think!

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Katie As @katieas.bsky.social · Sep 11

It’s shocking. SO well done for calling in 👏🏼

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Andrea Is Sick of Long Covid @andreastudiescovid.bsky.social · Sep 11

Good description of PEM. I struggled so much to describe this constellation of suck to my doctors in the first few years of long COVID. All I ended up with was one Dx of exercise intolerance, another of anxiety, and my neuro saying long Covid resolves in a few weeks to months. That was in 2022.

Tom Kindlon @tomkindlon.bsky.social · Sep 10

Great to see a UK GP writing a BMJ e-letter like this:

"Research must consider Post Exertional Malaise as a neurological event underpinning fluctuating cognitive dysfunction in Long Covid"

www.bmj.com/content/390/...

#PEM #LongCovid

PEM warrants recognition as a neurological pathology resulting from metabolic and immune dysregulation (3). Approximately 48 hr after a triggering event—physical, cognitive, or emotional—patients experience what is colloquially termed a “crash.” This involves a surge in neurological symptoms that may render them unable to function: profound fatigue, cognitive slowing, hypersomnia, photophobia, phonophobia, tinnitus, nausea, headaches, migraines, executive dysfunction, word-finding difficulties, working memory impairment, pain, and worsening dysautonomia with orthostatic intolerance, mood disorders. Although these symptoms may be present at baseline, they rapidly escalate in the disabling cacophony of the “crash”. Many patients report diurnal variation, with symptoms peaking midday and easing somewhat towards night, repeating daily until resolution, suggesting a neuroimmune process with a circadian rhythm. Patients often experience disablement until the episode resolves over days or weeks.

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Anne Marie @annemarie1.bsky.social · Sep 11

I called @lbc.co.uk to ask Children's Commissioner Rachel De Souza if she has listened to @longcovidkids.bsky.social
Does she have have any idea how traumatising it is for a child to be forced into classrooms with ppl who HAVE Covid, when Covid already ruined their childhood?
She is NOT listening.

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Katie As @katieas.bsky.social · Sep 11

So a few less would be fine? What a waffling answer.

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Katie As @katieas.bsky.social · Sep 11

I wasn’t expecting that! I like that you don’t panic. Sweet little thing.

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Katie As @katieas.bsky.social · Sep 9

It was intense! Amazing woman.

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