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

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Persistent Physical Symptoms Research and Treatment Unit - Kings College London; South London and Maudsley NHS Trust

The Persistent Physical Symptoms Research and Treatment Unit is a national specialist service undertaking assessment, treatment and research regarding chronic fatigue syndrome (CFS, sometimes known as ‘ME’).

The unit is a partnership between King's College London, South London and Maudsley NHS Trust and NIHR Biomedical Research Centre.

Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME. We also provide Graded Exercise Therapy (GET) and are also now seeing patients with fatigue in relation to chronic diseases.

Adults with CFS/ME who fulfil specific research criteria may be offered the opportunity to participate in research at this unit, and adolescents with CFS/ME may be eligible to take part in our research.
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Projects:

BRC BioResource for mental and neurological health: a national project to build up a central library of information or 'biobank' of biological samples in order to better understand different psychiatric and neurological illnesses as well as to help researchers to develop new and better treatments more quickly.

A study investigating attention and concentration issues in chronic fatigue syndrome

A study investigating the role of the immune system in the development of persistent fatigue

A study investigating the cortisol levels in bipolar, atypical and non-atypical depression and chronic fatigue syndrome.

A study of factors influencing nervous system activity in chronic fatigue syndrome
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for the rogues gallery of the 50 members of this team see

https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1
 
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Sets up a unit claiming to investigate CFS - calls it the Persistent Physical Symptoms Research and Treatment Unit.

How stupid must they think we are? Either that or how stupid must they be?

And if you check the studies tab, the listed 'CFS' studies don't show...
 
And the expected benefit of duplicating the work of the LSHTM biobank, located in the same city, is? Oh, right, probably because it had to be funded by the US NIH to actually get off the ground and that looks kind of bad and they're doing real research anyway so that's kind of threatening to the survival of the BPS belief system they operate with.

I guess that's the way NIHR can pretend to fund biomedical research, it gives it away to a unit that cosplays as biomedical but actually intends to do psychometric questionnaire marathons. I'm not sure if they expect this to count but it definitely does not. Chalder is part of the team, all your questionnaires are belong to them.

This school of thought has operated fully independent of the actual researchers in the field, never mixing or cooperating, and will still be doing that even though it's clear that doing more isolated efforts is a complete waste of time, especially as it looks like they're basically about to redo the early Wessely stuff, not even doing much new research. It frankly looks like an experiment in waste, pretending to do research so they can end up saying "welp, we tried (again) so there's definitely no there there".

It will be difficult for them to recruit actual ME patients, especially given the pandemic circumstances. Not that they'd likely care much anyway, it looks more like generic idiopathic fatigue, whatever dozens of meanings they have for that.
 
I don’t understand what the point of this is. Quite fed up of these institutions doing yet another new but same old thing.. I thought the PACE and PRINCE trials were bad enough

So they’re going to do “biological” studies while at the same time still prescribing and carrying out CBT & GET?

I’m pretty sure this is going to come crashing down at some point soon when the new NICE guidelines get released anyway (I mean, I hope so, that’s what I would presume, because there’s no evidence for GET &CBT?). So they only have a bit of time to do this. What’s the point of this really?
 
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And there is Trudie Chalder (referrals tab)
Management:
Explanation of illness often of value;
set treatment goals;
self-help guides i.e. ‘Coping with Chronic Fatigue’ by Trudie Chalder;
avoidance of excessive rest or excessive exercise or activity and/or sudden changes in activity - plan regular, predictable, consistent activity to combat deconditioning, restore confidence and self-control;
cognitive behaviour therapy if available;
regular follow-up;
no current evidence that allergy, immune or dietary manipulation helpful.
Antidepressants are principally of value where there is a co-morbid depressive illness or clear cut depressive symptoms.
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Referrals for adolescents:

Professor Trudie Chalder
Persistent Physical Symptoms Research and Treatment Unit
Mapother House, 1st Floor
De Crespigny Park
Denmark Hill
London SE5 8AZ
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Sly Saint said:
“The Persistent Physical Symptoms Research and Treatment Unit is a national specialist service undertaking assessment, treatment and research regarding chronic fatigue syndrome (CFS, sometimes known as ‘ME’).

The unit is a partnership between King's College London, South London and Maudsley NHS Trustand NIHR Biomedical Research Centre. ”
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Naive question here.
How is NIHR independent & able to make decisions re funding for research, if it is in Partnership with a particular ‘research group’?

@EspeMor - please can Forward-ME and APPG on ME consider investigating this announcement a bit further?
 
It's M.E. Linda said:
Naive question here.
How is NIHR independent & able to make decisions re funding for research, if it is in Partnership with a particular ‘research group’?

@EspeMor - please can Forward-ME and APPG on ME consider investigating this announcement a bit further?
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NIHR’s 20 Biomedical Research Centres (BRCs) are collaborations between world-leading universities and NHS organisations that bring together academics and clinicians to translate lab-based scientific breakthroughs into potential new treatments, diagnostics and medical technologies.
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https://www.nihr.ac.uk/explore-nihr/support/experimental-medicine.htm

The link given for the particular Biomedical Research Centre above doesn't work, this seems to be a working alternative, https://www.kcl.ac.uk/lsm/research/divisions/hscr/research/biomedical-research-centre-(brc)

I would interpret the fancy talk about being in partnership as meaning that they simply provide funding.
 
The work of this group always puts me in mind of therapy dogs. We are the therapy dogs and our purpose is to make them feel needed, important and fulfilled in their work.

To me this is the core of what's going on here. Their need is so great no amount of outside reality will penetrate their armour.

Also, this is necessarily their end-game. They need this. If this move into 'biological' research doesn't help everyone believe in their worldview of BPS for all they're left with nothing.
 
Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME. We also provide Graded Exercise Therapy (GET) and are also now seeing patients with fatigue in relation to chronic diseases.
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Interesting they don't make the same evidentiary claim about GET. Not that the evidence for CBT is any better.

avoidance of excessive rest or excessive exercise or activity and/or sudden changes in activity - plan regular, predictable, consistent activity to combat deconditioning, restore confidence and self-control;
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SOS. Same Old Shit.

The delusion of control via scheduling and moderation runs deep in this mob. Still stuck on the Goldilocks prescription – not too little, not too much, just the right amount, and us experts can tell you just what that is.
 
Nihr havefingers in lots of unpalatable CFS pies. This, funding Crawleys work, behind the work that formed basis of damaging RCGP guidelines, all whilst sitting on the CMRC. It’s like when the science media centre were there two facing.
they seem big on behaviour intervention generally possibly? I saw that they had in 2018 commissioned research into the rehabilitation of cognitive dysfunction in MS, it yielded a study which i think had minimal effect, Perhaps unsurprisingly. It wouldn’t surprise me if this were the type of research to be encouraged by the new James linden partnership thing.
 
Cinders66 said:
Nihr havefingers in lots of unpalatable CFS pies. This, funding Crawleys work, behind the work that formed basis of damaging RCGP guidelines, all whilst sitting on the CMRC. It’s like when the science media centre were there two facing.
they seem big on behaviour intervention generally possibly? I saw that they had in 2018 commissioned research into the rehabilitation of cognitive dysfunction in MS, it yielded a study which i think had minimal effect, Perhaps unsurprisingly. It wouldn’t surprise me if this were the type of research to be encouraged by the new James linden partnership thing.
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I think some of us, myself included, were hugely over-confident about progress being made after Matthees got the PACE data out. These people are so entrenched within medical research that they can simply come up with new ways of promoting and justifying quackery, regardless of what the evidence indicates about their impact on patients. I share your concerns about the James Lind process too.
 
ladycatlover said:
Quite entertained to see two of the names involved... Fear and Croak! :rofl: Nominative determinism lives! :rolleyes:
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"
King's Centre for Military Health Research
KCMHR Co-Directors
Professor Sir Simon Wessely
Co-Director KCMHR and ADMMH

Professor Nicola Fear
Co-Director of KCMHR and Reader in Epidemiology"

eta: But of course we know that SW is 'no longer involved in CFS research'....
 
Esther12 said:
I think some of us, myself included, were hugely over-confident about progress being made after Matthees got the PACE data out.
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Guilty, m'lord. :(

It has been a real eye-opener for even this hard core cynic to see just how protected a species these mongrels are. o_O:grumpy:

That said, there has been serious progress post-Matthees win. Just not in the UK, as yet.

I think the real test is going to come with the NICE and Cochrane reviews. If they don't deliver, the system is completely broken.
 
avoidance of excessive rest or excessive exercise or activity and/or sudden changes in activity - plan regular, predictable, consistent activity to combat deconditioning, restore confidence and self-control;
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Still making the discredited claim about deconditioning too.

Seriously unimpressed they are allowed to keep getting away with it. :mad:
 
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