Harriet Carroll: Long Covid Scientific Consultancy

The collabs for pathology targeted research seem very fruitful - research meetings I attend are usually really interesting hearing what folks are doing and sharing ideas etc

I think part of the problem is that people can get lots of BS publications on ME, then on paper they look like experts and in their mind they are experts. Raises a deep question about what is expertise... And yeah i dunno how to solve that 😅

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we do have some v limited research expertise, and there is zero reason why international collaborations couldn't happen if UK teams genuinely wanted to help ME (by learning and collab'ing) - the fact they don't i think is a huge problem, grumble grumble

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OH MY GOODNESS 😻

Anyway, I hope my point comes across clear and is a useful addition for this and future study critiques 💛🔥

Doing a study against current and established guidelines should not happen bar in very exceptional, highly-specialised, circumstances, led by a legitimate team of experts. And I think this is something we really need to hammer home

❌Ethics boards being duped by academics who can justify any idea they want to do
❌ Patients having inadequate support and education from their medical teams to understand why they should not participate in these kinds of studies

This study in isolation is not the problem per se, but rather the entire academic system that repeatedly allows these studies to go ahead is:
❌ Non-experts deciding they can and should run studies like this
❌Funders not having appropriate expertise, & funding these studies

So instead of highlighting the problems with this particular study, I wanted to highlight that doing these kind of studies is BY DEFAULT unethical.

Full stop.

There is no doing this the "right" way.

In this case, it is clear in Berry's study someone mentioned PEM, so they "addressed" it (badly, but they can still say they provided info and support). They addressed a critique we've been repeating for years. In their mind: Job done ✅

Delighted to say my comment got published! 👇

There was a lot of critiques I considered about this study, but the problem is that if we critique an individual study, future studies can just avoid that particular critique. So I tried to take a different approach 🧵

two wolves mating, with the male mounting the female from behind during sex in a position well known as "doggy style"

two dogs standing butt-to-butt which is them technically having sex, known as knotting. the males penis is not visible in the picture but it is inserted and trapped inside the females vagina. the male dog is ginger and looking quite exhausted, whilst the female is white with ginger patches and looks quite chipper.

Fun fact: once the male dog has fully penetrated the female, blood rushes to a gland in his penis locking it inside the female. In most dogs, doggy style then goes from mounting the female from behind ↙️, to standing butt to butt whilst ejaculation occurs ↘️
en.m.wikipedia.org/wiki/Canine_...

Birds Raised In Complete Isolation Evolve 'Normal' Species Song Over Generations Biologists have discovered that zebra finches raised in isolation will, over several generations, produce a song similar to that sung by the species in the wild. The experiment provides new insights i...

Fun fact: zebra finches raised in isolation evolve the same song found in the wild after a few generations. The first isolated bird has a unique song; the next gen learn this song & refine until it sounds like wild songs
nature.com/articles/nat...
Easy read:
www.sciencedaily.com/releases/200...

a man with the words well that escalated quickly written on his face ALT: a man with the words well that escalated quickly written on his face

Fun fact: thanks to their cartilaginous endoskeleton, sunfish grow exceptionally fast, requiring an increase in mass of 60 million times to reach adult size. In one case, a sunfish maintained nearly 1 kg per day growth for 15 months
link.springer.com/article/10.1...
biomedcentral.com/about/press-...

Structure, crystallography, and morphogenesis of the cryptic shell of the terrestrial slug Limax maximus (Mollusca, gastropoda) The structure and crystallography of the internal shell of the pulmonate gastropod slug Limax maximus were studied at the levels of light and scanning electron microscopy, revealing patterns of shell...

Fun fact: slugs are pretty much just shell-less snails - some slugs even have (internal) remnants of a shell
onlinelibrary.wiley.com/doi/abs/10.1...
mdpi.com/2075-4450/12...
nhm.ac.uk/discover/sna...

A tortoise beetle. The beetle is flat, black and smooth, and on its back is a large mass that kind of looks like dreadlocks Image: https://www.britannica.com/animal/Insects-That-Wear-Things

Tortoise beetle from the side. It has a large black mass on its back made of poop, and its butt is a long tube that is reaching around to the poop on its back

Fun fact: some tortoise beetle larvae also use a poop backpack, sometimes mixed with shed exoskeleton bits, for protection. To make the poopy pack, it extends its telescopic anus & literally shits on itself
zookeys.pensoft.net/article/1026...
www.livescience.com/animals/beet...

😍😻🥹🥹🥹🫶🏻

"much of the pollution is not from a single source, it's a build-up of everyday chemicals, referred to as diffuse pollution"

Citizen science tackles invisible river pollution
www.bbc.co.uk/news/article...

"DWT says only 15% of the county's rivers are in good ecological health and none are in good overall health"

I've mentioned your blog here: s4me.info/threads/uk-s...

One of the participants of the trial has also posted there.

I love the "we know GET is bad, i swear we are different!"

"Participants were asked to perform upper body exercise initially and bring-in the lower body exercises in week 3."
=GET by any other name.

Yeah i had some thoughts about their use of DSQ but im not that well versed in its use, so kinda glad im not the only one who is suss...

Defs bring a bigger one if you can. Constant people in and out even if youre in your own room, plus every time they open the door, all the air from the ward comes flying in.

Wishing you luck 🤞🏻🍀

@mrspockscat.bsky.social 🐾

I love the author reply of just ignoring the critique 😂 youre only allowed 400 words, i had so many critiques so hoping i picked a "publish worthy" one

a close up of a cat 's face with its tongue sticking out ALT: a close up of a cat 's face with its tongue sticking out

I’m fine!🐾

If i had an emotional support cat, thats what theyd look like 😆

CISCO-21 Long COVID exercise study complaint University of Glasgow and the Chief Scientist Office of Glasgow have been running a study called CISCO-21. The trial registration can be read here. The study is titled: Prevention and early treatment ...

I had really prolonged back and forth about this with NHS Greater Glasgow and Clyde and it got so tedious, including speaking to UKRIO, the blog isn't even up to date with how it ended, but it gives a sense of what was discussed: dontbelievehype.co.uk/covid-%26-va...