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Lucibee 🌻 Profile picture
Lucibee 🌻
@_Lucibee
Science defender (MSc) and eco-worrier. Might be locked occasionally (for reasons). (she/her)
Dec 18 • 16 tweets • 4 min read
Yesterday, the @MEAssociation published this statement on its website, alleging that their trustees had been accused of illegal payments and dishonesty. meassociation.org.uk/2024/12/mea-st… They claimed that the current 2014 version of their Articles of Association, as registered with Companies House in 2014, does not forbid payments to trustees for services provided.
They helpfully posted a link to that document. Image
Aug 25 • 8 tweets • 3 min read
This was a very good phone-in show, and well worth a listen in full.
#GreatestMEdicalScandal

It was particularly interesting to hear what Wessely had to say, and I'll come on to that below, because he has said many, many things about this over the years. First of all, his complaints about the torrent of people seeking diagnoses for autism and ADHD.
This is what he said about a very similar thing in 2002: Text of extract reads: But more commonly the act of giving a name to symptoms and disability brings relief. The acknowledgement by the medical profession that a patient's condition has a name and is a legitimate illness is immensely reassuring and enabling. It also ends the battle of diagnosis—“If you have to prove you are ill you can't get well.” Giving a condition a name is an intervention in itself with costs and benefits. Crudely handled, medicalisation can perpetuate disability and exclusion. But used constructively and appropriately it is the first step towards recovery.
Jul 31 • 9 tweets • 2 min read
"Can't separate" or "*won't* separate"?

BPS proponents have done soooo much damage to the notion of holistic healthcare.

To see the whole person, you also need to see all the parts. And vice versa. And, yes, of course every disease (condition) has a psychological component, because they all tend to occur in conscious human beings with brains! 🙄
Jul 23 • 53 tweets • 12 min read
If it helps, I'm going to try to put together a thread of tweets from #MaeveInquest, so that those there/online can concentrate on what's said and don't have to worry about threading. #MaeveInquest Day 2 - Dr Strain
Jan 16 • 9 tweets • 3 min read
The #PACEtrial is a prime example of how the current medical publishing model doesn't work.
😲that a study so flawed can remain in print and in prominence for so long, without any correction or even investigation.
Everyone @TheLancet involved should be ashamed of themselves. Image Dozens of letters were sent to @TheLancet after publication to point out serious methodological errors.
Some were published (start here: )
but not a single correction has been made.thelancet.com/journals/lance…
Nov 1, 2023 • 17 tweets • 3 min read
Many folks are retweeting this - but have you actually read as far as the section on "Psychological disorders and long COVID" which seems to be completely at odds with the rest of the review. 🤔 "...psychological and psychosomatic factors exert an indispensable role in the progression of long COVID..."
🤔
Oct 13, 2023 • 34 tweets • 7 min read
Note that both the experts on "Long Covid" in this morning's session are probably going to be looking at post-ICU Long Covid as they are respiratory physicians from the PHOSP Covid study.
#UKCovidInquiry One of the main issues with this inquiry is that it only looks at what was done, and not what *should* have been done.
And only asking those who "did" what should have been done is going to give a quite distorted picture.
#UKCovidInquiry
Aug 7, 2023 • 22 tweets • 4 min read
I tried to put stuff together over the past few days to write about this episode - but keep getting bogged down.
It's one hell of a boggy marshy rabbit hole.
Everytime I look, I find something else that's wrong, that simply stinks, about the whole thing 😩 This was the issue I was exploring today, and it looks very fishy indeed.
May 30, 2023 • 18 tweets • 6 min read
A summary to the @actionforme report into the implementation of NICE guidance on ME/CFS (NG206) is here: actionforme.org.uk/news/foi-repor…

I have thoughts... 🧵 My first thought is that asking an NHS trust whether they have implemented NICE guidance on a particular topic doesn't tell you very much.
It doesn't tell you *how* they might have implemented it, or that an affirmative answer means total compliance.
#ImplementNICEmecfs
May 29, 2023 • 8 tweets • 4 min read
Link to the Times Radio programme is here: thetimes.co.uk/radio/show/202…
Interview is at 02:15:20
May 28, 2023 • 4 tweets • 2 min read
Yesterday, whilst out while the sun was high, I noticed this phenomenon - of millions of bugs and seeds spiraling round the sun.
I could only see it because the sun was obscured, so I tried to capture it (somewhat unsuccessfully) in this video... instagram.com/p/CswF5-JuTF3/ This photo does a slightly better job, but it's hard to get the focus point right.
As your eyes keep refocusing, it's just bugs all the way up! Image
May 19, 2023 • 9 tweets • 2 min read
Saw this meme quote (ht @TomKindlon) and it's got me thinking again about how we measure subjective outcomes, particularly wrt how trials and stats work (or don't, in this case). Text reads: This is a quot... First of all though - I don't know whether haematologists are any better placed to understand this or not - I can't find the origin of the quote (the earliest I can find is here (tagged as 26 Sept 2016): facebook.com/ADayintheLifeo…) - but the substance is broadly true.
May 17, 2023 • 8 tweets • 2 min read
I've been wondering why, over the past few days, I've been feeling really upset by all the talk about this Panorama ADHD documentary.
Then I realised.
That you have know what's wrong with you to get any help. But what if you don't. What if life has become impossible, but you have no idea why?
You reach out, and eventually get put on a waiting list for what you hope will be a proper assessment of what might be wrong, and possible help at the end.
Aug 11, 2022 • 26 tweets • 7 min read
I spent most of the day down that particular rabbit hole (again) @exceedhergrasp1.
It's quite deep. 😳

It might even warrant a thread... It's going to be a messy one though, because I now have a squillion tabs open, and there are many different paths this could go down.
Well I did say it's a rabbit hole, and there is a bit of a warren down there.
Jun 18, 2022 • 4 tweets • 2 min read
And of course I hadn't realised how far back this goes.
Here is Sir William Allchin's lecture from 1886 (HT @TeunkeA), who reminds us that "functional" was used as the contrast of "organic" in the late 19th century.
archive.org/details/b22267… This is fascinating to me, because I was studying molecular medicine and virology at uni at exactly the time (early 1990s) when certain people were trying to revive the notion of "hysteria", "conversion disorder" and "functional disease", albeit in a new guise
Jun 15, 2022 • 5 tweets • 2 min read
Here is the paper release article from Imperial that explains a little more: imperial.ac.uk/news/237315/om… Another good 🧵
May 30, 2022 • 15 tweets • 4 min read
It's been a while since I blogged, so what shall I blog about today?
I know; how the SMC uncritically reinforces the orthodoxy (without much regard to the actual evidence)
#BeyondTheHype
lucibee.wordpress.com/2022/05/30/smc… OK. That was the TL;DR version.
Do I blog the rest of my thoughts as a long rambling essay, or in short chunks?
Mar 3, 2022 • 8 tweets • 4 min read
That’s a substantial leap… 😳 #LongCovid Bar chart of #LongCovid symptom duration
Estimated number of people living with LC symptoms (1000s) Image
Feb 10, 2022 • 9 tweets • 3 min read
This is a really important paper that goes a long way to explaining how diseases such as ME/CFS and #LongCovid might arise after viral infection.
I'll attempt a few lay explainers in this thread 🧵 In this article, Prusty explains how unstable and not-the-usual peptides generated from usually hidden locations on the cell or viral genome can be mistaken for foreign viral antigens and lead to immune attack, even though they look like part of the host.
Feb 7, 2022 • 10 tweets • 4 min read
#LongCovid featured on @ITVCymruWales Sharp End tonight.
@Eluned_Morgan said she had met with pwLC last week, and they had all said that the service they receive from the LC service was excellent.
She doesn't believe any "anecdotal reports" that they are not.
@LongCovidWales @ITVCymruWales @Eluned_Morgan @LongCovidWales "We are following NICE guidance..."

Errr... how is NOT having multidisciplinary centres following NICE guidance? Image
Jan 29, 2022 • 19 tweets • 4 min read
I hope Prof Reicher won't mind if I try to explore this further, because this is one of the things that has been so problematic (and toxic) in discussions around ME/CFS. The problem here is that this has been weaponised by certain people to imply that it is those with ME who are doing the demeaning, by complaining that they have been told that it is "only in their mind".