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

hibiscuswahine said:
Some people find it useful to use mindfulness techniques while processing trauma with a therapist.
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Do have any meaningful trial evidence though?

The problem we have with GET and ME-style CBT is that medical organisations are claiming that 'some people find them useful' on the basis of clinical experience, which we know is unreliable.

People will say 'thank you, I found that useful' just because it is the easiest thing to say. We need evidence that a specific technique does more than that.

I am in the process of writing a book about the events of the last five years and I have to come to the conclusion that we don't have reliable evidence for any psychotherapeutic technique being of value in the ME area and I am increasingly sceptical about other areas, as I think is Brian Hughes.

I am very happy to believe that some psychotherapy sessions are supportive regardless of whatever technique is supposedly being used but I am sceptical about claims for anything more.
 
Jonathan Edwards said:
Do have any meaningful trial evidence though?

The problem we have with GET and ME-style CBT is that medical organisations are claiming that 'some people find them useful' on the basis of clinical experience, which we know is unreliable.

People will say 'thank you, I found that useful' just because it is the easiest thing to say. We need evidence that a specific technique does more than that.

I am in the process of writing a book about the events of the last five years and I have to come to the conclusion that we don't have reliable evidence for any psychotherapeutic technique being of value in the ME area and I am increasingly sceptical about other areas, as I think is Brian Hughes.

I am very happy to believe that some psychotherapy sessions are supportive regardless of whatever technique is supposedly being used but I am sceptical about claims for anything more.
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If we acknowledge that some things don't work, then that creates an opportunity to look elsewhere e.g. the GWAS study you were involved in identifying/promoting.

Also, much of the poor quality work can be replicated using objective outcome criteria (actimetry). I know you had some ideas about using actimetry to test whether different management approaches would bring benefit.

The folks here are pro sound science (although we are sometimes caricatured differently). The other thing is, as you've pointed out countless times, maybe science/medicine needs to be honest about what it can't currently measure/do.
 
Jonathan Edwards said:
Do have any meaningful trial evidence though?

The problem we have with GET and ME-style CBT is that medical organisations are claiming that 'some people find them useful' on the basis of clinical experience, which we know is unreliable.

People will say 'thank you, I found that useful' just because it is the easiest thing to say. We need evidence that a specific technique does more than that.

I am in the process of writing a book about the events of the last five years and I have to come to the conclusion that we don't have reliable evidence for any psychotherapeutic technique being of value in the ME area and I am increasingly sceptical about other areas, as I think is Brian Hughes.

I am very happy to believe that some psychotherapy sessions are supportive regardless of whatever technique is supposedly being used but I am sceptical about claims for anything more.
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I am sure that this is the truth. If there were solid evidence for these techniques it would not be necessary for our healthcare organisations and associated parties and other interested parties to make such liberal use of un-evidenced assertion or to rely with such regularity on elaborate ornate contradictory obfuscatory justifications.

A few simple facts would back these techniques. But they don’t. So.
 
Jonathan Edwards said:
Do have any meaningful trial evidence though?

The problem we have with GET and ME-style CBT is that medical organisations are claiming that 'some people find them useful' on the basis of clinical experience, which we know is unreliable.

People will say 'thank you, I found that useful' just because it is the easiest thing to say. We need evidence that a specific technique does more than that.

I am in the process of writing a book about the events of the last five years and I have to come to the conclusion that we don't have reliable evidence for any psychotherapeutic technique being of value in the ME area and I am increasingly sceptical about other areas, as I think is Brian Hughes.

I am very happy to believe that some psychotherapy sessions are supportive regardless of whatever technique is supposedly being used but I am sceptical about claims for anything more.
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I agree, I was referring to techniques used in mental health not in the “treatment” of ME, MUS, Persistent Symptoms as they call it . Mindfulness skills are general mental health techniques for people who may wish to use them.

I have read they are already offering Mindfulness Based Stress Reduction in CFS clinics in the UK. The difficulty is that clinicians in these clinics may do similar stigmatising use of these techniques, much the same as with CBT, label the PwME as lacking psychological flexibility. And instead of saying you have abnormal illness beliefs/behaviours, they will use this and have already developed scales for this based on Mindfulness (MBSR) and Acceptance and Commitment Therapy. I have seen this being applied already in psychosomatic research in Europe.

Mindfulness can help lower stress levels and anxiety for some people. It does not require a therapist, it is not much different than deep breathing , meditation and relaxation skills.

I suspect Kings College are looking for people to test whether this is helpful or not.
 
no surprise that nothing has changed here.
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.
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"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."

https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1
 
Trial By Error: King’s College London Still Promoting Discredited CBT/GET/Deconditioning Paradigm

I have written a few posts about how various health entities have so far not changed the information about ME/CFS on their websites or acknowledged the revised recommendations published by the UK’s National Institute for Health and Care Excellence (NICE) last October. In addition to replacing the name CFS/ME with ME/CFS, the new guidelines have rescinded approval of graded exercise therapy (GET) and cognitive behavior therapy (CBT) as treatments for the illness. (The guidelines leave room for CBT as supportive care rather than a curative intervention.)

The ME Association’s medical advisor, Dr Charles Shepherd, has written to a number of regional National Health Service trusts to express concern about the matter, with varied results. Recently, he sent another letter–this time to King’s College London. With Professor Sir Simon Wesseley and Professor Trudie Chalder leading the posse, KCL is home base, or one of the home bases, for the GET/CBT ideological brigades. (I mean, what else is a professor of CBT like Professor Chalder going to offer anyone?)

At some point–I don’t know exactly when–KCL’s CFS/ME service has rebranded itself as being devoted to addressing “persistent physical symptoms” (PPS), another term for so-called “medically unexplained symptoms” (MUS). But it still highlights the importance of reversing the purported deconditioning that purportedly is a cause of what it continues to call CFS/ME. The KCL site does not, apparently, reference the new NICE guidelines or inform patients that its approach to treatment has been officially discredited.
Below is the letter sent by Dr Shepherd.
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https://www.virology.ws/2022/08/09/...-discredited-cbt-get-deconditioning-paradigm/
 
job ad
Psychology Research Assistant | South London and Maudsley NHS Foundation Trust
Summary

We have an exciting opportunity for a research assistant within the Persistent Physical Symptoms Service, Mapother House, Maudsley Hospital. We are seeking an enthusiastic person to be part of our internationally recognised service.

You will work as part of a clinically experienced multidisciplinary team that includes Psychiatrists, Therapists and a Physiotherapist.

The post holder will vital in supporting the clinical team with any research or day to day activities that are delegated to them. The post holder will also cover the same role for the Neuropsychiatry Outpatient Service.

In this role, the post holder will be responsible for administering psychological measures, data management duties, data analysis, as well as writing up of results.

We are an internationally recognised service providing assessment and evidence-based treatment for persistent physical symptoms (PPS). Our expertise includes chronic symptoms in long term conditions and medically unexplained symptoms. We treat a range of conditions including:

Persistent physical symptoms

Chronic fatigue syndrome

Chronic physical symptoms and disability in long term conditions

Fibromyalgia

Irritable bowel syndrome

Non-cardiac chest pain

Dysfunctional breathing

Chronic pain

We pride ourselves in our ability to engage with people who have complex and sometimes long-standing difficulties. We can treat people with significant disability and those suffering from co-morbid depression or anxiety.

The successful candidate will be responsible for managing a computerised database of patient’s referral details, subsequent processing and presentation of information. They will co-ordinate responses to requests for information both internally and externally and will be responsible for the analysis of data for the unit and trust purposes, using SPSS.

They will oversee the collection and analysis of data in relation to various research projects being undertaken in the unit with assistance from senior members of the team, and contribute to writing up scientific papers related to research carried out in the unit. The post holder will also provide active administrative assistance in the clinical research aims of the unit.

The post holder will be required to interact appropriately with research participants, service users, their carers and relatives, with the ability to convey the goals of the research in a friendly manner. They will also participate in and contribute towards multi-disciplinary meetings within the unit, as well as liaising with health professionals outside of the research team as required.

The post holder will also be responsible for ensuring that study recruitment targets are met and that accurate data collection records are maintained.
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https://findajob.dwp.gov.uk/details/10501377?lang_code=en
 
Posts moved from this thread:
Snippets from White P et al. "Eight major errors in the review process and interpretation of the evidence in the NICE guideline [...]" [for ME/CFS]

bobbler said:
Certain clinics (King's I believe) now, when contacted by MEA as they had not updated in line with guidelines, replied to say they don't treat people with ME/CFS 'just those with CFS/ME' which made it clear they were setting their stall out to try and pull off this type of stunt. Funny that the 'fatigue clinics' want the condition to be redefined as 'only fatigue' isn't it.
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livinglighter said:
Even before the new guideline, I came across CFS/ME clinic patient criteria, saying the primary symptom must be fatigue.
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I couldn't find this on the MEA website. I found this page that said a response would be coming, but can't find more: https://meassociation.org.uk/2022/0...ns-about-their-website-information-on-me-cfs/

Maybe it's another response @bobbler was thinking of?

Maybe I'm just bad at finding stuff?
 
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Esther12 said:
I couldn't find this on the MEA website. I found this page that said a response would be coming, but can't find more: https://meassociation.org.uk/2022/0...ns-about-their-website-information-on-me-cfs/

Maybe it's another response @bobbler was thinking of?

Maybe I'm just bad at finding stuff?
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At the top of the following fb post: https://www.facebook.com/meassociat...UfzmMqhEPxxXYsHiXHeXYbuKbnBLmZyM9yu1x25bJ7ygl

and also on this one (further down the comments, about ten posts down from MEA)

https://www.facebook.com/meassociat...muYR8H6t3n4iKpUvDVPwmPQV1sFqZHw54qpcYnm6PPzfl

is where they include the reply:

We have now received (as below) a reply from Kings College Hospital regarding the updating and removal of website information, including graded exercise therapy (GET), on ME/CFS

The KCH service now refers to treating people with fatigue or chronic https://slam.nhs.uk/.../persistent-physical-symptoms...).

The webpages you found were not routinely updated or had been archived. So, we have now updated one (https://www.kcl.ac.uk/.../persistent-physical-symptoms...) and the other archived web page will be removed in due course by administrators within KCL.

With kind regards
Morufat
Morufat Raji
Administrator
Persistent Physical Symptoms Service
formerly Chronic Fatigue Unit
First Floor Mapother House
De Crespigny Park
Denmark Hill
London SE5 8AZ
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Now you may not this response only says chronic fatigue. But if you go to the page they say is updated: https://www.kcl.ac.uk/research/pers...gag5untBX13LZGTdjWZtXDemmNhmg0Rz4UHE_Wy1-6Q3s

Then note that the bottom line about 'evidence' then says 'evidenced as effective treatments for CFS/ME', despite having cut short to 'chronic fatigue' in 'conditions we treat'.

Nowhere do they then say 'we do not treat CFS/ME (or ME/CFS to that matter)'

Director: Professor Trudie Chalder

The Persistent Physical Symptoms Research and Treatment Unit is an internationally recognised service, which provides a specialist diagnostic assessment and treatment for people with persistent physical symptoms. This includes fatigue, pain, irritable bowel symptoms and non-cardiac chest pain. We have developed models for understanding and treating persistent physical symptoms and continue to be at the forefront of research and development in this field. We offer specific treatment for chronic fatigue, irritable bowel syndrome, fibromyalgia as well as other persistent physical symptoms.

We also treat fatigue in the context of long-term conditions such as cancer or if people have finished medical treatment but continue to experience symptoms. Our evidence-based treatments are routinely evaluated. Our goal is to increase the person’s functioning, improve quality of life and wellbeing, reduce the severity of their symptoms and facilitate a return to work or education where possible

The unit is a partnership between King's College London, South London and Maudsley NHS Trust and the 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.
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I also note that on their eligibility criteria they have not updated at all to include exclusion of PEM or ME/CFS:

Eligibility criteria
  • 18 years and over
  • Male or female
  • Persistent physical symptoms which have not responded to usual treatment (three months or more)
  • Profound disability where the symptoms are impacting on several aspects of the person’s life
  • People who frequently attend the GP surgery and are not responding to usual reassurance and advice
  • Disturbed sleep pattern, for example the person is sleeping during the day or unable to get to sleep at night and has not responded to the usual treatment
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It's M.E. Linda said:
Nothing on MEA website, I found a further response by Dr CS of MEA within this Facebook post:

https://m.facebook.com/story.phpstory_fbid=pfbid0D23eVJX7qLyXEAM2h4fEmuYR8H6t3n4iKpUvDVPwmPQV1sFqZHw54qpcYnm6PPzfl&id=171411469583186

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and @Esther12 I think given the politics of all this there should be a box on the main MEA page that links through to a page with the situation at each clinic. Then each could have a page with all the correspondence.

If only for patients to see the attitude of each clinic, but also as this correspondence, who from, what comes back is important history and politics to show - including as relevant to show whether a clinic should continue, they could include dates of funding-related deadlines etc and is not a bad way of transparently collecting the admin task for each as well as showing the size of the issue and any trends.
 
It's M.E. Linda said:
Nothing on MEA website, I found a further response by Dr CS of MEA within this Facebook post:

https://m.facebook.com/story.phpstory_fbid=pfbid0D23eVJX7qLyXEAM2h4fEmuYR8H6t3n4iKpUvDVPwmPQV1sFqZHw54qpcYnm6PPzfl&id=171411469583186

View attachment 18747View attachment 18747
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30 séances of CBT? Good grief. The sheer cost and waste of this is absurd.

One interesting thing that will happen next year with the next iterations of AIs is that they will become as good as a highly-trained therapist at doing this. Especially CBT, which is entirely formulaic and generic. So soon most people will basically have access to unlimited therapy sessions using the best of psychological evidence. It will just do as well as a human therapist. In fact most people will either not be able to tell the difference, or actually prefer the AI.

And it won't change anything relevant to healthcare. There will be no general improvement from this to general health or well-being, certainly not symptoms or functioning. Because whether it's 1, 3 or 30 sessions of applying the wrong solution to a problem, it's still the wrong solution. And problems related to thinking are very rare and extremely specific. Lots of people will be helped for those problems, but those are usually so specific that it will be hard to tell the difference, as you can't really evaluate what people are thinking or what effect it has.
 
It's M.E. Linda said:
Nothing on MEA website, I found a further response by Dr CS of MEA within this Facebook post:

https://m.facebook.com/story.phpstory_fbid=pfbid0D23eVJX7qLyXEAM2h4fEmuYR8H6t3n4iKpUvDVPwmPQV1sFqZHw54qpcYnm6PPzfl&id=171411469583186

View attachment 18747View attachment 18747
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This is profoundly cynical if they are subsuming ME/CFS patients within ‘chronic fatigue’ or ‘persistent physical symptoms’. Is this a deliberate attempt to circumvent the NICE ME/CFS guidelines?
 
Peter Trewhitt said:
This is profoundly cynical if they are subsuming ME/CFS patients within ‘chronic fatigue’ or ‘persistent physical symptoms’. Is this a deliberate attempt to circumvent the NICE ME/CFS guidelines?
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Of course. Same for FND. The perverse benefit of getting away with using multiple labels for the same thing, they can just swap around the various labels to get around restrictions. They have dozens of those they can go through, could give them years of more BS.

I would go with the use of medically neglected symptoms instead. Understanding is not the issue, negligence is. The whole MUS thing is just pure dishonor, it's negligence, deliberate and willful.
 
Peter Trewhitt said:
This is profoundly cynical if they are subsuming ME/CFS patients within ‘chronic fatigue’ or ‘persistent physical symptoms’. Is this a deliberate attempt to circumvent the NICE ME/CFS guidelines?
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Yes. I think so?

To me this very action - and particularly the keeping '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.' seems no accident given it was kept there after it had been changed to chronic fatigue and a reply had been sent to MEA as 'all sorted' - and is just playing games misleading all involved.

The words "please note our unit and treatments are not appropriate or suitable for patients suspected of ME/CFS, CFS/ME or any other label and who might have or develop PEM/PESE at any point" are needed, but also a change to the pathway/decision tree for GPs to make sure it is regularly checked for before they get any referral, and for the continuation of any referral.


To my mind it's the supply equivalent of 'bed-blocking': preventing development of treatment/clinic that works and is safe for the patients who need it by refusing to remove treatment that doesn't work and isn't needed (or is harmful) for the patients.

And misleading referrers by leaving an important exclusion criteria off their list thereby sucking in people who shouldn't be referred in the first place

and it isn't in their interests to do exclusion tests to discharge before drawing down funding?

They must understand the seriousness of what they are doing: imagine if there were generic 'sad/lowness clinics' being allowed to not exclude for clinical depression yet offering treatment that is at odds with the guidelines for that and quoting out-of-date treatments for it under claims of 'well it might help people with something else that isn't that'. It would be seen as not taking mental health seriously.


As far as I'm aware they've also made no case regarding funding that there are a group without ME/CFS who would benefit from their treatments, how many they are and their clinical needs as far as Nice and CCG/ICB type funding and cost-effectiveness decisions.

Are they expecting to remain funded on the basis of debunked research for CFS/ME being the 'reason for being' for it being effective for other conditions? It is non-logic if so. They'd have replaced that phrase with relevant studies for the conditions it doesn't cause harm to, and they do reckon they can treat surely if they weren't trying to still tell referrers and patients they take CFS/ME, but were changing their focus to these? Particularly given 'the contentiousness of the area'?
 
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rvallee said:
30 séances of CBT? Good grief. The sheer cost and waste of this is absurd.

One interesting thing that will happen next year with the next iterations of AIs is that they will become as good as a highly-trained therapist at doing this. Especially CBT, which is entirely formulaic and generic. So soon most people will basically have access to unlimited therapy sessions using the best of psychological evidence. It will just do as well as a human therapist. In fact most people will either not be able to tell the difference, or actually prefer the AI.

And it won't change anything relevant to healthcare. There will be no general improvement from this to general health or well-being, certainly not symptoms or functioning. Because whether it's 1, 3 or 30 sessions of applying the wrong solution to a problem, it's still the wrong solution. And problems related to thinking are very rare and extremely specific. Lots of people will be helped for those problems, but those are usually so specific that it will be hard to tell the difference, as you can't really evaluate what people are thinking or what effect it has.
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Sweepstake on how many of the 30 are funded vs what the median/mean taken up number of sessions are. I keep seeing on social media that those who end up referred to many clinics are told if they don't attend sessions where they have little choice or flexibility on dates twice in a row they are out on their ear, I don't think I'm being cynical to wonder whether the bill is 30 but you'd have to be surprisingly well and also somehow have no other commitments and miraculously get no other illness or bug over that time period to ever complete 30.

Plus services I've know even in employer ones rarely offer more than 6-8 due to 'demand' which makes me think the above even more. I'm all for enough if someone needs more of whatever but saying 30 sessions isn't the same as offering 30 doable sessions to each person - and that is before them being useful/in demand from anyone. DO the funders look into this, and are there stages for that funding ie you have to reapply after 10 weeks/how does it work?

I say this curious because I'm sure I've seen research papers from other areas that show a large % of some services have people dropping out after 1-2 sessions. To whcih I was also curious whether the 1 session was enough to trigger the 'full bill' e.g. I know the uni sector and there used to be a Dec deadline by which point if someone was still enrolled then the full year's fees were due. How does this work in this instance?
 
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Esther12 said:
Thank you.

Any tips on how you found that which I could learn?
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On some Facebook groups, the search function allows you to ‘search within the group pages’ (that may be just within private groups possibly?)

I knew that I had read a response, so it must have appeared on the MEA Facebook pages.
So I searched
“Kings College MEAssociation” and some options appeared - the result in comment #102 was one of them.

Hope this helps!
 
website 'updated'
see post here
https://www.s4me.info/threads/snipp...guideline-for-me-cfs.30906/page-6#post-452204

upload_2022-12-17_17-46-53-jpeg.18747
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