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Reposted by Didier

Kelly @broadwaybabyto.bsky.social · 7d

“1 in 17 acute-care hospital stays involved at least one harmful event. In 1/4 of those cases, patients experienced more than one.”

This is why disabled patients say no one should be alone in hospital.

Everyone needs an advocate.

Most of us have experienced tremendous harm:

‘No blame, no shame’: Experts urge culture shift to reduce hospital harm

A new report shows preventable harm continues to be a significant issue in Canadian hospitals, affecting thousands of patients and adding pressure to the health-care system.

www.ctvnews.ca

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Reposted by Didier

Long Covid Advocacy @longcovidadvoc.com · 9h

5 years later there is no cure or treatment for Long Covid. Problematic biopsychosocial ME/CFS researchers & clinicians led the set up of paediatric Long Covid health care & narrative in the country. We still see this stigma & mindset in educational & medical settings. /16

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Long Covid Advocacy @longcovidadvoc.com · 9h

This has not been fixed. We are not in a position to adequately deal with this or future pandemics. We saw a program on minimisation from education & health leaders that has led to hundreds of thousands of children & adults with disability & illness. Unacceptable. /14

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Reposted by Didier

Long Covid Advocacy @longcovidadvoc.com · 9h

7. Combat stigma & misinformation
8. Establish accountability mechanisms for the DfE & public health decisions are transparent & child-centred
9. Fund biomedical research into paediatric #LongCovid #ME
10. Covid vaccination programs aligned with annual flu campaigns /12

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Didier @medidier.bsky.social · 9h

Honestly ask, it is so difficult to implement these points?
More 'expensive' than the alternative of do nothing?
More ethical or humane than to abandon citizens to their own health struggles?

The whole thread is absolutely spot on.

Long Covid Advocacy @longcovidadvoc.com · 9h

CALLS TO ACTION
1. Acknowledge airborne transmission
2. Implement national clean air standards
3. Restore infection monitoring
4. Mandate school risk assessments
5. Provide quality teacher training on infection prevention, Long Covid & ME
6. End punitive attendance policies
/11

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Reposted by Didier

Long Covid Advocacy @longcovidadvoc.com · 9h

ME CRISIS UNACKNOWLEDGED
Post-acute viral illness is not new. The Long Covid crisis exists because of the failure to acknowledge, treat & research ME. The failure to understand the prevalence & seriousness of ME meant a lack of preparedness for post-acute viral outcomes /10

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Reposted by Didier

Tom Kindlon @tomkindlon.bsky.social · 1d

From South Korea:

"ﬁndings suggest alterations in immune, glucose, & lipid metabolism pathways, along with neuroinﬂammation & neurodegeneration, contribute to the psychiatric PASC phenotype"

www.nature.com/articles/s41...

Screenshot from Science for ME update

#LongCovid #COVIDBrain

Discovery of molecular signature of long-term psychiatric sequelae in COVID-19 through proteome profiling of dried blood spots — Baik et al.
"ﬁndings suggest that alterations in immune, glucose, and lipid metabolism pathways, along with neuroinﬂammation and neurodegeneration, contribute to the psychiatric PASC phenotype"

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Reposted by Didier

Solve M.E. @solveme.bsky.social · 1d

Register today for the @icancmeresearch.bsky.social online conference Nov. 4-6. The event was designed by people w/ #MECFS and the theme is “Nothing About Us Without Us.”

icancme.ca/research/202...

2025 ME Conference - ICanCME

icancme.ca

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Reposted by Didier

ThereForME @thereforme.bsky.social · 3d

We know that support for people with ME isn't anywhere near as good as it should be - & we're working hard to change that.

But this Christmas we wanted to take a moment to celebrate those in the UK who are in our corner.

Can you help us find our #ThereForME advent calendar stars?

A large white star with an orange question mark in the centre. It is on a pale blue background with many small stars. Beneath it “ThereForME Advent Calendar 2025”

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Didier @medidier.bsky.social · 16h

Some 'repeats' from last year but I think of Tessa Munt, Natasha Devon, Chris Ponting, Binita Kane, Jeremy Jeff, people behind crowd campaign #justice4ME, (Violet Affleck as the improbable famous appeareance :)

Didier @medidier.bsky.social · 17h

Joder. Y van pasando los años... 😮‍💨 como duele.

Didier @medidier.bsky.social · 18h

True in 2022.

And astonishingly, still true in 2026.

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Didier @medidier.bsky.social · 18h

Add to this a much more practical pblm which is that sooner or later you will need to negate/minimise/hide what science and patients are saying just to keep pushing such strategy.

A really shitty human strategy, and an even worse counterproductive scientific strategy at the end of the road.

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Didier @medidier.bsky.social · 18h

I really will never ever understand how someone would think this was a promising strategy: "let's ignore 50 years of the #GreatestMEdicalScandal and this way we will certainly guarantee it is not repeated with us".

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Elke Hausmann @drelke.bsky.social · 20h

So, the obvious links between LC and ME are negated due to the very real fear that the stigma connected to ME will ‚contaminate‘ LC. This is a dead end. We need to look at the commonalities between these illnesses and reduce stigma for all!

#LongCovid
#ME

Zooming in then on how the experts understand why (white/Swedish, middle-class) women are overrepresented highlights the importance of these divergent views. For those emphasising the similarities with other post-viral infections, women are over-represented in relation to post Covid because they tend to have a history of unexplained pain/ME, burn-out, depression and anxiety, thus the
epidemiological pattern does not come as a surprise. The other group of experts, by contrast, seek to avoid exactly that link; by referring to ME, burn-out and depression and anxiety, they seem to think, post Covid risk losing its status and become one of those female-dominated non-specific disorders that have struggled to gain legitimacy and resources within health policy and care.

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Reposted by Didier

Tom Kindlon @tomkindlon.bsky.social · 2d

Dysautonomia Awareness Month: Mast cell activation syndrome (MCAS), a condition that can co-occur with dysautonomia and ME/CFS, involves mast cells over-producing chemicals like histamine. It has many triggers, such as stress, caffeine, and certain foods tinyurl.com/4dtjhtet

#MEcfs #MCAS #PwME

MAST CELL ACTIVATION SYNDROME (MCAS) & ME/CFS
MCAS is a condition where mast cells - immune cells that normally help protect the body - become overactive. When triggered, they release chemicals such as histamine, which can cause a wide variety of symptoms across different body systems, many of which overlap with ME/CFS symptoms.
Whilst The BMJ describes MCAS as rare, the Bateman Horne Center suggests it is a common comorbidity in ME/CFS and long COVID (although more robust research is needed to confirm a link).

mast cell
•
.
•
brain fog
fatigue
itchiness
urticaria (hives)
INFORM. INFLUENCE. INVEST.
(

dizziness palpitations wheezing nausea bowel issues
141% RESEARCH UK SCO36942

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Didier @medidier.bsky.social · 2d

The history of #ME is without comparison whatsoever. I've honestly come to not even care about my own struggle/fate when thinking about past patients. Biggest abomination in modern medicine, and nothing is moving fast either...

Thank you for everything you do! Sending back solidarity 💙🫂💙🫂

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Reposted by Didier

valebodi.bsky.social @valebodi.bsky.social · 2d

while still being mischaracterized and denied. And the fact that we needed a pandemic of a novel virus, to start to draw attention to the mother of all post infectious sequelae, is beyond absurd and tragic.

Sending solidarity your way 💙💙💙🫂💙💙💙

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Reposted by Didier

valebodi.bsky.social @valebodi.bsky.social · 2d

Now imagine growing up with a classic post infectious case of ME when there was no internet/Google and pushing through PEM until it you are middle aged and become completely disabled. The devastation, suffering and losses that ME/CFS bring on #pwME, our families and society is staggering,

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Didier @medidier.bsky.social · 2d

I only needed one episode back in march 2022 to realise it was smtg totally different.

I still knew nothing about #ME, and yet that night I googled "allergic to exercise is possible?".

The doctors? "Nah, a little fatigue from virus"...

If you know, you know.

#pwME
#GreatestMEdicalScandal

valebodi.bsky.social @valebodi.bsky.social · 2d

Absolutely agree with you. #PEM is qualitatively & quantitatively different from fatigue. And it’s the core distinguishing feature of ME. PwME know very well what it is and how punishing and disabling it is to try to live with it. On top of it still being misunderstood a/o invalidated by medicine.

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Reposted by Didier

valebodi.bsky.social @valebodi.bsky.social · 2d

infections and sensory stimulation such as a hot day or a noisy neighbour.

#ME/CFS #pwME #PEM #PEM≠fatigue

Text between [ ] was added by ME.

Thank you to @scienceforme.bsky.social

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Reposted by Didier

valebodi.bsky.social @valebodi.bsky.social · 2d

potentially devastating and totally disabling physiological consequences - such as needing a feeding tube and 24/7 care like a terminal cancer patient] just from basic activities such as talking or washing. Factors outside the person's control can trigger PEM, such as work and family demands,

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Reposted by Didier

valebodi.bsky.social @valebodi.bsky.social · 2d

because the level of exertion that triggers it is often lower than the amount of exertion they need to do to live, given the support they have. The amount someone can do and level of stimulus they can tolerate may be so low that #PEM is unavoidable [and at that point it becomes rolling PEM with

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Reposted by Didier

valebodi.bsky.social @valebodi.bsky.social · 2d

but a necessary complete absence of activity, mental & physical. Basically being forced to shut down and watch yourself being alive, but dead at the same time. Frequently while also being in pain and serious bodily disfunctions.]

It can be hard or impossible for someone with ME/CFS to avoid PEM

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Reposted by Didier

valebodi.bsky.social @valebodi.bsky.social · 2d

“Living” with #PEM
Episodes of PEM make the already disabling illness harder to live with. PEM can vary from unpleasant to unbearable. Some people refer to a PEM episode as a crash. Some report episodes of PEM lasting for hours, but they are more likely to last for days or weeks, sometimes longer.

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Reposted by Didier

valebodi.bsky.social @valebodi.bsky.social · 2d

What is #PEM? An accurate and indepth factsheet via @scienceforme.bsky.social www.s4me.info/docs/PEM_Fac...

#ME/CFS #pwME #PEM #PEM≠fatigue

www.s4me.info

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