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Lucibee 🌻 Profile picture
Lucibee 🌻
@_Lucibee
Science defender (MSc) and eco-worrier. Might be locked occasionally (for reasons). (she/her)
Feb 9 • 7 tweets • 3 min read
About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS...

🧵 1/n Email sent to NHS elearning enquiries on 12 January 2026. Subject - Request for information. Dear NHSE elearning hub, I am making a freedom of information request (FOIA 2000) for the following data. In 2024/5, the NHS England elfh e-learning hub introduced 3 new modules on ME/CFS: 1. An introduction to ME/CFS (May 2024). 2. ME/CFS: guidance for community-based healthcare practitioners (January 2025). 3. Managing Severe ME/CFS (September 2025). Please can you tell me how many people have completed each module to date (from date of introduction), and what the breakdown is for logins by... 2/n

The reason I asked was because the ME/CFS Delivery Plan makes some quite distinct promises (alright, "aims") about their e-learning package, including this item in their table of Agreed Actions.

gov.uk/government/pub…Extract from the ME/CFS Final Delivery Plan (UK Government, 22 July 2025). Action: The Royal College of Physicians (RCP) will ensure that its training on ME/CFS keeps pace with research and guidance in the core postgraduate training for primary and secondary care physicians. Progress: RCP will, for now, rely on NHS England’s e-learning modules, which are considered suitable by RCP. Timeline and measure of success: Aim for all RCP members to undertake the e-learning by the end of 2025. My comment: This should be easily measurable. Has it been achieved?
Sep 18, 2025 • 10 tweets • 3 min read
Tucked away in the resources for the new NHS module on severe ME was this checklist.

I thought it looked useful, so I've reformatted it as slides.

Much of the information is a repeat of the 25% ME Group/Action for ME/BRAME/MEA hospital support document.

🧵1/9 Managing severe ME/CFS patients in hospital settings - Checklist for staff. This checklist is designed to help hospital staff, nurses, and physicians provide safe and appropriate care for patients with severe ME/CFS who are hospitalised for other conditions. Pre-admission and initial assessment • Confirm diagnosis of severe ME/CFS and review patient’s advance care plan (if available). • Ensure patient has a quiet, low-stimulus room (ideally a single occupancy room with dim lighting and noise control). • Minimise unnecessary movement (avoid frequent repositioning, tests, and forced m... 🧵2/9 Sensory adaptations and environmental considerations • Room modifications: ◦ provide a darkened room with blackout curtains or dimmable lighting ◦ reduce noise (turn off unnecessary alarms, limit staff talking) ◦ limit hospital staff entry to only essential visits ◦ ask hospital staff to avoid perfumes or strongly scented soaps • Communication adjustments: ◦ speak softly or use written communication if the patient has sound sensitivity ◦ reduce length of interactions to prevent cognitive exhaustion • Limit bedside procedures: ◦ allow bedside phlebotomy, portable i...
Aug 8, 2025 • 15 tweets • 6 min read
Any prior link with depression is likely to be highly complex.

Wessely knows this. He's studied it.

But it's worth remembering that this link is also found for many other disorders, including Parkinson's and MS, and it's a known risk for cardiovascular diseases. But the problem with many of these studies is that the definitions of ME/CFS are not robust.

Wessely's study only asked whether participants had ever been diagnosed with either CFS or ME. No checks that even existing (loose) criteria were met.

pmc.ncbi.nlm.nih.gov/articles/PMC31…
Jul 24, 2025 • 6 tweets • 2 min read
The MRC Independent Advisory Group was set up in 2002 to produce a report on "CFS/ME" in 2003, as a result of the 'Report to a CMO' of 2002.

The group members are listed here:

hansard.parliament.uk/commons/2002-0… The MRC report is mentioned here:

But with no link. Does anyone know what happened to it?

It seems the result was PACE and FINE.meresearch.org.uk/research/other…
Jul 23, 2025 • 11 tweets • 3 min read
Dr Alexis Gilbert has outlined what the Final Delivery Plan for ME/CFS *should* have looked like (on IG): instagram.com/p/DMa8sjPMzd2/Image A 🧵of @alexis___me 's IG slides [with alt text] -

What the ME FDP *should* have looked like. Background. The UK Government published their final delivery plan for people living with ME today. It was a step in the right direction strategically but it was lacking many specific actions that we need right now. I had inspiration from sources like @crunchME reports and @thereforME and Long Covid advocacy groups as well as many other places and people like the brilliant @elle.is.beyond.tired
May 25, 2025 • 14 tweets • 3 min read
The (International) Cambridge Symposium on ME/CFS/PVFS (April 1990) occurred a few weeks after Melvin Ramsay died.
The proceedings from the conference were eventually published in this book, 2 years later (1992):
me-pedia.org/wiki/The_Clini… x.com/RFH1955/status… Dr Leslie Simpson (from Univ of Otago, NZ) mentioned the symposium in a letter to the JRSocMed in 1991...

His research on Nondiscocytic Erythrocytes in the Pathogenesis of ME/CFS is included in the book at chapter 65.pmc.ncbi.nlm.nih.gov/articles/PMC12…
Dec 18, 2024 • 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, 2024 • 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, 2024 • 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, 2024 • 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, 2024 • 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 20, 2023 • 25 tweets • 6 min read
More reference to this "Gulf war syndrome stuff" comment by Boris on 9 Oct. Seems to be a recurring theme as Sir Patrick mentions it a couple more times...
#UKCovidInquiry From PV's notebooks...
7 Oct and 25 Oct Image
Image
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.