Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

Notably, the Danish are hopefully moving away from this approach sooner rather than later. And they obviously do not mention Fink’s ties to the insurance industry and how that parallells what happened in the UK as well.

 

I may have missed something but didn’t Fiona Symington state she had EDS, Fibromyalgia and Chronic Pain Syndrome. Paul Garner had a post infective fatigue state allegedly that stopped within 18 months? All a bit irrelevant to ME/CFS I think. Hopefully the reader would know that but still a pretty depressing article all the same.

 

Same old, same old.

Alastair Miller was told 20 years ago that the CFS therapy service he referred pts over to had stopped GET. He never stopped referring incorrectly to pts that they needed GET. Strange man.

As part of the CFS service in Liverpool he was only involved in diagnosis. He had no involvement or oversight of the CFS therapy service. No clue how he thinks he has any expertise in managing anyone with ME, let alone severe ME.

When I gave a lecture along with Malcolm Hooper about ME at the Liverpool Medical Institute, at the end of the lectures, he left the auditorium dropping his copy of the Canadian Consensus guidelines on the floor as he went.

And I could go on......

Not worth the effort.

He'll never change. He simply spouts what someone else tells him too. Embarrassing. Lazy.

No use giving these oddballs airspace.

 

My guess is that it's a bit of marketing and lobbying for their Oslo thing. They're trying to establish themselves as experts and point to their recent influence in some Scandinavian countries as the new model to follow, despite the fact that it's the same model that is still in effect in the UK.

Eternal rebranding is a major feature of psychosomatic ideology. So pushing the same old thing but pretending that it's a new approach is entirely on brand since no one ever actually looks. It's amazing how the medical profession behaves much the same as a bunch of local rubes who got scammed by a snake oil salesman, and always keep falling for the new salesman, which just happens to be the same old salesman with a different mustache.

 

Unfortunately, publications like the BMJ are always happy to play along, giving them all the platforming they ask for. Not that it changes anything. If anything, it will just make them look even more awful once there is a breakthrough.

BMJ to the left. RFK Jr to the right. Stuck in the middle with clowns and buffoons spewing tired nonsense. If only they could understand how much their lies led directly to the current "the truth doesn't exist" era. But they don't. Not at all.

 

There is something unspeakably sick about medical professionals saying that someone whose life was destroyed and ultimately ended as a consequence of listening to them actually just needed to listen to them harder and do what they said more.

These people are absolutely monstrous. I really hope Jonathan is right about that ship on the horizon, because I am sick to death of these callous delusional faith healers.

 

I was offered a trip to Leeds (from Suffolk!) by an OT in 2023. Luckily my first reaction was to think that it sounded too good to be true and to come on here and see what people said...

 

I'm reading the report of the Leeds unit that they have linked to as reference 12: NICPM-Annual-Review-2020-21.pdf

, which is an utterly weird thing to refer to in itself for a number of reasons:

- hasn't it closed? and it must have been not long after this.

- there are lots of other reports maybe but I'm struggling to work out how to acces them and I'm unsure these either have the same name across the years or that they were 'outstanding', even in this report the 2018 one is noted on page 35 as having an overall rating of 'good'.

- the report itself has written all over it in bold red at multiple points even on certain sheets that this covers 2020-21 for a year's period when the pandemic meant the capacity was significantly reduced. 11 people were discharged, apparently less than normal 'because some were delayed' (gives me the creeps that whilst this could be for helpful reasons to the patient it could be that some weren't being helped given the therapy on offer and stayed longer) and 'because of the pandemic'.

- the report itself is weird. it reads like something written by the place itself rather than what I expected from an inspector. UPDATE: turns out it is just a report written by 2 staff members running the NICPM see a later comment.

- It is full of pie charts and bar charts about who is there - and given only 9 people consented to filling in this data, and it is stuff like their illness, secondary comorbidity and length of stay it feels incredibly identifiable as apart from the 5 who were lumped under CFS the others (4 people) were one line on other diagnoses like depression or the one with ptsd, one with ibs etc. same thing with the comorbidity where it says 'most' had these but then the chart shows 5 had 'nil' and then list eg a hearing impairment for one, diabetes for one other etc


Anyway, I'll update as I go so it doesn't get too long but my jaw dropped when you get to the page 12: clinical outcome measures
which lists what they measured this suppposed improvement of those discharged (mean stay looks like 6months) on:

1. Clinical Global Impression (Improvement) Scale - CGI-I

I couldn't believe it when I saw this given the recent paper (which I think is what the latest David Tuller trial by error is on) we've been discussing on some other 'research' which tries to claim the CGI is somehow better than the SF-36: Trial Report - Cost Utility of Specialist Physiotherapy for Functional Motor Disorder (Physio4FMD), 2025, Hunter, Stone, Carson, Edwards et al | Page 2 | Science for ME


the spiel in this 'annual review for the NICPM' report based on 9 patients (which then lists the 'recovery stats' from each year from 2009/10 onwards using it seems maybe on the CGI measure) is:

 

Page 13-14 is worth a look for the claims on the bar charts of what people progressed from severity-wise during their visit.

note the bar chart of improvement on page 13 uses the following 'key'

and on page 14:

OK so then after describing the CGI, astoundingly the next 17 pages - from page 13-29 - were simply pages of subjective measure after subjective measure they'd managed to get these 9 individuals to fill in (only 5 of whom had CFS/ME, the rest another illness like depression, PTSD listed) , and yes both the CHalder fatigue scale and then HADS are in there.

with bar charts with curves on them for each showing 'at the start' and 'at the end'. It looks like a [25 pages expanded version of] brochure for face cream claiming anti-aging I had to analyse for an English report when I was a teenager. And I'm old enough now that I'm pretty sure none of the creams stopped aging back then.


the next 2 pages - pages 30-31 - are just full of feedback from patients and carers listing a lot of one line phrases.

 

OK so now this turns out to be confirmed as the case?
On the last page of the report - page 36

"Annual Review Authors

Dr Peter Trigwell
Consultant and Clinical Lead National Inpatient Centre for Psychological Medicine

Mrs Kairon Eustace-Tyson
Clinical Team Manager National Inpatient Centre for Psychological Medicine Leeds and York Partnership NHS Foundation Trust May 2021"

 

Lets hope it really will say it in the history books.

 

well... I can imagine if the money was turned off and it became a poorly paid venture with no gravy train money for old rope to chase then you know, maybe, find a new target to market at their supporters and those surrounding them etc?

I agree I'm not sure the pony has another trick though

 

this might be 2+2=5 and only one thing behind the article/strategy but the section at the bottom of page 35 of this 'annual review' (which I've now realised is written by those who run the service not the CQC): NICPM-Annual-Review-2020-21.pdf

which references what I guess was the last actual CQC report which

makes a note of a section 'requiring improvement' then talks a lot about how great the service is, but the accommodation really does need a new location/they are trying to come up with a long-term estates plan.

 

it feels more about the current affairs stuff to do with benefits and severe illness (noting Liz Kendall MP's response to a question from Tessa Munt MP this week) and/or the task and finish plan stuff (an opportunistic/get ahead of the 'offering nothing' claims) maybe other things I might have missed...

 

Yes indeed, particularly as their reference 24 for it is a paper: Cognitive–behavioural group treatment for a range of functional somatic syndromes: Randomised trial | The British Journal of Psychiatry | Cambridge Core that includes Per Fink as the last author,

has dated itself 2018, but their method says

I have a feeling this 11-12 year gap from 2006-2018 the date they actually gave it is more a forerunner of the recent trend we are seeing from bps of just bunging later dates on things or releasing when it is convenient, rather than the requested 'long-term follow-up' that Nice underlines.

What in this circumstances would have stopped them from doing 1,2,3,5,10year proper objective assessments instead of ... you know the usual methods issues used.

 

I'm just reading further through this Danish paper that really could have been published in 2008 by the looks of it given recruitment was done in 2005-6 and the last measure is 16months.

I'm rubbing my eyes and checking what I'm reading for their proposed outcome measures:

I'm pretty sure from this last line above that means they didn't use the SF-36 as it should be used (a global measure) but instead just picked a few of the scales out then fished around making up their own calculation for those and what they claim would be 'clinically significant'.

But there is far more.... read the bit after the next quote (I'm trying to keep the para in order) as they then chucked this out!!!

I'm quite astounded because straight after this para, there is then a section 'statistical analysis' and it is hard to belief on reading how they wrote this with a straight face saying they had to throw out the fuller SF-36 [that the para above states was to triangulate/make their results comparable] because their physical and mental health scores negatively correlated.

It is worth the effort of reading through this, and as I've only posted the first long para to this with my line breaks for readability it might even be worth going through to the paper to read the rest of this section which carries even further on with descriptions of their 'adaptations to their measures and calclations after the fact'.

 

oh yeah I thought I'd pick out this point about the NICPM 'annual review' (written by themselves) paper quoted

Yes, you are reading this correctly. This bunch of article authors are quoting a report as if it is a CQC report, that is actually some strange 'annual review' written by themselves that

- has approx 5 CFS/ME patients it discharged and filled in their (I assume lots of given how many subjective measures) measures.

- And the results are mixed in with 4 other patients with different, not CFS/ME, conditions.

 

More propaganda from BPS. Isn't it lovely that Garner et al are interested in our mental health, wanting to give us hope - how wonderfully evangelistic of them. Our true saviours. Their references include the psychologist Reme doing her study in Norway on LC patients. Basically a stitch up by the Oslo Fatigue Consortium.

I was thinking about the "50% improvement" (according to the MDT of the Leeds clinic) and a bit sickened they mentioned Maeve. Maeve sounded like someone who had hope that eventually biomedical science would provide the answers and wanted to stay alive while her illness worsened and with it her nutrition and hydration worsened (even while in hospital!) no support was given to her or her carer to maintain her nutrition and after so much negative and unhelpful medical input (which involved denying her a NJ tube) she died.

Perhaps the "50% improvement" was getting good nutrition and had nothing to do with psychology. How would we know without a more rigorous examination of this "evidence". Perhaps put pwME into a low stimulus ward and start feeding them, stop gaslighting them and then look at the results.