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Lucibee 🌻 Profile picture
@_Lucibee
May 29 • 8 tweets • 4 min read Twitter logo Read on Twitter
Link to the Times Radio programme is here: thetimes.co.uk/radio/show/202…
Interview is at 02:15:20
I'll be interested to read this report to see whether it tallies with what @WAMESMECFS discovered last year: wames.org.uk/cms-english/ni…
This was the response from @PTHBhealth
#ImplementNICEmecfs
wames.org.uk/cms-english/po…
However, if you follow the links to their website, it seems they have removed all mention of ME and CFS from the service pthb.nhs.wales/services/powys…
And, as far as I can tell, they are still using exactly the same techniques and therapies they were using 10 years ago.
Nothing has changed.
#ImplementNICEmecfs
It seems that @PTHBhealth have updated their pathway by removing all mention of ME/CFS 🤔
#ImplementNICEmecfs
Is there anyone from Powys w/ ME who can confirm this? #pwME
Actually, it doesn't need to be anyone from just Powys, as the Fatigue and Pain Management centre in Bronllys is/was an All-Wales service.

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More from @_Lucibee

Lucibee 🌻 Profile picture
May 30
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
There also seem to be assumptions made about what implementation means on both the part of the trusts and @actionforme
Let's take a look at question 1:
Has [NHS trust] implemented NG206? Image
Read 18 tweets
Lucibee 🌻 Profile picture
May 28
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
I found this article on this phenomenon (ft @j_chapman2), but I'm trying to find a better video of the effect.
But maybe it's just best witnessed IRL.
(with appropriate precautions 😎)

npr.org/sections/krulw…
Read 4 tweets
Lucibee 🌻 Profile picture
May 19
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.
The reason these measures are inappropriate in trials is because everyone's experience of pain (and fatigue) is different.
Yet a trial will seek to average a score across a cohort to produce a group baseline or outcome for comparison.
Read 9 tweets
Lucibee 🌻 Profile picture
May 17
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.
You wait 3 and a half years.
Finally, the appointment comes, and to your disappointment, you are not given any kind of assessment, but put on a generic 12-week course of one-size-fits-all talking therapy.
Read 8 tweets
Lucibee 🌻 Profile picture
Jun 18, 2022
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
In the 19thC article above, Allchin accepts that the term can be a useful placeholder for diseases for which the cause and pathology are unknown, but you can sense his concern that it is in danger of becoming an entity in its own right.
Read 4 tweets
Lucibee 🌻 Profile picture
Jun 15, 2022
Here is the paper release article from Imperial that explains a little more: imperial.ac.uk/news/237315/om…
Another good 🧵
And again for those at the back...
Omicron infection is a poor booster of COVID-19 immunity
imperial.ac.uk/news/237315/om…
Read 5 tweets

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