United Kingdom: Kings College London; South London and Maudsley NHS Trust

whatever they say they will still get referrals for CFS patients:

https://slam.nhs.uk/referrals-persistent-phsycial-symptoms

 

“Recommend avoidance of excessive rest” is really quite staggeringly bad advice. It stands out, even amongst all the other wilful stupidity.

 

lol an explanation would be utterly priceless!

but considering we dont know, NO ONE KNOWS, it is the epitome of hubris/religious level belief, to think you can explain it.

 

The note about there being no current evidence for dietary changes and immune/allergy manipulation is really something in itself considering that dietary changes and antihistamines are basically two of the only common things that actuall help some people.

It sure is true that there is no formal evidence, because EBM is simply awful at this stuff. But it actually meets an even higher standard than their own evidence: it IS of actual help to some. Far more than anything they do. We don't know why but it could tell us many things if only there were an actual expert profession that is able to do this basic work.

It's hard to put in proper context just how completely uniquely bad this is, how not a single other profession does anything this awful even about trivial problems. This is an extreme form of incompetence.

 

I mean, we knew they'd do this. But it's still a galling display of "piss-taking", as my late Nana would say.

Ideologues digging their heels in, despite best practice leaving them behind.

Still, anyone treated by them might be in for a huge windfall if they can organise class action against the clinics.

 

It's why patients of all varieties should band together and just attack the bad practices used together. We've been fighting from our little niche corner and have managed to get some points across but seeing how pervasive this is in medicine and how many groups are affected there really should be a concerted effort to get rid of the problem root and stem. That would be some undertaking though...

 

In fact, because I think that being 'on top of' the money flow/way it all works is important I'm going to reiterate that last question to see if anyone happens to have been in a situation where they either know the answer or could point to info that informs a good estimate:

Is someone merely being signed up to, or just doing 1 session (and never returning), enough to trigger the 'full bill for the entire course of CBT, GET etc' with these clinics? At what point/what criteria is that money/funding released?

Do any of these places charge/bill/count work done 'by the session (rather than full course of sessions or number of patients however many sessions or appts they have)'?

More context/thoughts:
I think this would be an interesting FOI or project to see how they all work - and if there are different protocols/process by either geographic area or type of clinic (BPS vs on-BPS but also lots are private providers etc).

BUT I also gather this could be 'muddied' by the way that contracts work meaning that it is hidden in reporting or caveats - e.g. funding is based on 'how many pass thru' and we are then looking at a question of how many sessions/what someone has to do in order to 'be counted' on this list.

I can well imagine how undesirable it might be to change to something actually 'in demand' if you were running a service where the ave number of sessions actually done by patients was a mere fraction of the number you were funded for.


I'm concerned that rather than mapping out the basics, bare minimum of what PwME would actually need from a 'service' - although really the 'system' (context) needs to be mapped for this, because it depends on what GPs or employers or benefits or hospitals and other things are still doing or not changing as to whether a lot of this is basically 'protection from or instruction to, or back-up in' not even for medical care but safety and basics rights to what others take for granted as these.

Claims of funding would be an issue is one of the things cited for 'new clinics' but really this stuff is really basic - and changing eg. OT help from a focus on motivation to MEA/ForwardME for example pushing for issues related to rest like sorting noise issues, bed issues, adjustment issues so people aren't pushed into the over-threshold zone etc.

EDIT: it would be good to know precisely what is actually funded/how the system works currently to see the context of what those limitations are re: funding etc.

 

Given the outsourcing within NHS , this is an important aspect. Vitality 360 and others may provide such services .

Then there's the new " app" era dawning.
Does a download count as treatment?

 

still on their website (although from 2014), without any warnings.

CBT for chronic fatigue syndrome

https://www.kcl.ac.uk/news/spotlight/cbt-for-chronic-fatigue-syndrome

 

podcast from 2019
CBT for Chronic Fatigue Syndrome
Let's Talk About CBT · 2019-11-19

https://uk-podcasts.co.uk/podcast/let-s-talk-about-cbt/cbt-for-chronic-fatigue-syndrome

 

pt2

TC "Obviously it’s not a cure for everybody. And people are often still left with some symptoms. But a lot of people do improve. And there are, as I say, lots of randomised control trials demonstrating its efficacy."
eta:
note 'Bens story' is also the only one featured on BABCPs personal accounts of CBT for chronic fatigue syndrome
https://babcp.com/What-is-CBT/Personal-Accounts-of-CBT/Ben-CBT-for-Chronic-Fatigue

 

She gives away her be1ief that a11 'CFS' patients have a behavioura1 condition in her words here. You wou1dn't say that about MS (for examp1e), that at 'one end of the spectrum' peop1e are managing their MS we11 in contrast to those who are in a whee1chair. or house/bedbound. Rather you wou1d say some MS patients are 1ess severe1y affected and hence ab1e to 1ive a reasonab1y norma1 1ife, whereas other MS patients might be very severe1y affected by their condition.

She's obvious1y not saying peop1e with mi1d 'CFS' have avoided becoming more severe by 1imiting their activity and avoiding triggering PEM, as she goes on to ta1k about increasing activity (the usua1 tripe she spouts). Whatever she's ta1king about, it's not ME/CFS with the ha11mark PEM as we understand it (and now recognised by NICE).

 

This may be a repeat but basically for university fees there is a Dec deadline after a student enrols end set/early oct by which if they are still enrolled the whole fee is due ie the whole year's fees have been triggered.

I’m sort of angling at things like this which would certainly inform any data eg of all patients ended up doing ‘2months’ no matter how many sessions it if just one session released the whole amount of funding for up to 30 to Kings etc

 

KCL IoPPN (Institute of Psychiatry, Psychology and Neuroscience)

https://twitter.com/user/status/1654162132810727436

https://twitter.com/user/status/1654171106163425282

 

job ad
Psychology Research Assistant

https://www.jobs.nhs.uk/candidate/jobadvert/C9334-23-0481

 

Posts moved from UK news

Disturbing thread on X
Tagging @PhysiosforME , ( Dr Michelle Bull) has been querying details but needs wider charity awareness @Russell Fleming


https://twitter.com/user/status/1773073013757342121


I'm finding it difficult to put into words just how angry I am to have sat through such an appalling session on the so-called management of #MECFS at a conference delivered by @kingshealth this week to approx. 200 attendees. 1/6

Perhaps now that I understand more about the opinions of the team delivering the session, I should be unsurprised that there was no reference whatsoever to the NICE guidance or #PEM, and to have been advised to encourage #GradedExerciseTherapy 2/6

Nonetheless, I am in a state of disbelief to have been advised to "break the association between symptoms and stopping activity", "address reassurance seeking and unhelpful behaviours" and "make links between symptoms and behaviour" 3/6

Apparently, predictors of poor outcome include "being in receipt of invalidity benefits" and "belonging to a self-help organisation". Shocking examples of #patientblaming and #ableism 4/6

Often, no response is a powerful response. But not in this case. While unable to control the actions of others, we can choose how to respond to them, and as pointed out to me today, to not challenge something like this can be as good as accepting it @sunsopeningband 5/6

We are lucky that organisations including @LongCOVIDPhysio @MEAssociation @PhysiosforME @WAMESMECFS work hard to advocate for #pwME and #pwLC and educate HCPs on safe rehabilitation. We must continue to challenge unsafe and harmful practice. #StopRestPace 6/6



In replies
It was actually an FND conference, I didn't even notice there was a talk about ME/CFS. If I'd done my research first I might have known what to expect

ETA corrected last paragraph as double posted thread 6/6 previously