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

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.

 

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.

 

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.

 

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.

"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

https://www.virology.ws/2022/08/09/...-discredited-cbt-get-deconditioning-paradigm/

 

job ad
Psychology Research Assistant | South London and Maudsley NHS Foundation Trust

https://findajob.dwp.gov.uk/details/10501377?lang_code=en

 

Hmm, I wonder if they're doing anything different to "treat" CFS than they were a couple of decades ago? Because in my experience that "treatment" didn't work.

 

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]

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?

 

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

 

Thank you.

Any tips on how you found that which I could learn?

 

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:

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)'

I also note that on their eligibility criteria they have not updated at all to include exclusion of PEM or ME/CFS:

 

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.

 

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.

 

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?

 

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.

 

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'?

 

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?

 

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