Royal London Hospital for Integrated Medicine: Physiotherapy for Chronic Fatigue (CFS), Aug 5 2021

Unbelievable..............

https://www.youtube.com/watch?v=Xa653R7T9Kc

 

But they have the research to back it up....

https://www.royalfree.nhs.uk/services/services-a-z/fatigue-service/cfs-me-research/

It will be interesting to see if any of these services update their webpages after the new NICE guidelines are published, and if so, what wording they use.

 

That site is total gibberish.

Something that maybe the discussion on S4ME has not considered too much is that, maybe with the retirement of most of the PACE authors, ME/CFS multidisciplinary services now look as if they are run by people who have no clue at all - even about BPS research.

Perhaps this has some relevance to the late resignations from the NICE committee. Staff are being left high and dry having been taught one lot of stuff but, without any understanding of the evidence, now completely cast adrift with that stuff chucked out.

 

Assuming the new NICE guideline is more or less along the lines of the draft, I wonder how long it will be before crud like this gets finally purged. Years I suspect.

 

Do they just don't care about the words they use? Obviously this wasn't even a possibility with PACE, it was a pragmatic trial, had nothing to do with understanding the causes. You literally cannot use a pragmatic trial to infer cause and obviously it had nothing to do with cause they literally explain that they don't care. Why do they say those things so carelessly? Oh, right, it's because no one else cares. Right. Ugh.

 

And PACE presumed a cause from the outset (no investigation deemed necessary!), a flawed presumption of course. For example, this pile of tosh from the PACE GET therapists' manual:

 

I am surprised but not surprised to see that the hospital is still touting the PACE trial. pretty weird to see. I assume a lot of that is just knee-jerk cluelessness about anything going on outside the bubbles they inhabit.

 

‘Use it or lose it’

Amazing that I didn’t decondition like this over 18 months of essentially sedentary life while studying for my Part 2s. At the end I just got back on my bike and skis and started playing sports again.

 

Most of the NHS 'CFS/ME' services just seem to state that they 'follow NICE evidence based treatments and/or guidelines'. It seems that it is the larger London and university hospitals that go beyond this 'safe' explanation for why they provide the specific treatments they offer.

I notice the Maudsley now formally classify CFS/ME as a MUS condition (rebranded as 'Persistent Physical Symptoms'), conveniently dropping the word 'Syndrome' from the condition's name:

https://www.slam.nhs.uk/our-services/service-finder-details?CODE=SU0310

https://www.slam.nhs.uk/national-se...hysical-symptoms-research-and-treatment-unit/

 

Further info on SLAM:

https://www.kcl.ac.uk/ioppn/depts/pm/research/cfs/about/index

I will be particularly interested to see how Kings deal with the new NICE guidelines (which to make clear, I haven't seen the pre-publication version of, but am feeling hopeful based on the recent resignations of certain members of the committee...).

 

If you listen to the end of the video (it's rather painful and seems long --- 2 minutes or whatever) then the next screen which appears is a collage of the usual internet suspects --- strangely appropriate --- i.e. this physio video would fit into that slightly weird collage.

If the NICE guidance is pretty much the same as the draft, then would this video be appropriate? What "incentives" are there for Health Trusts to drop this approach? The obvious one is that solicitors might find this a nice little earner --- NHS Trust dispensing treatment not consistent with NICE Guidance ---££££s --- what's not to like! So maybe it would be appropriate to give the health trust a steer - planning on providing physiotherapy for ME/CFS - what if someone sues --- where is the support for this policy?

 

that's a different hospital to the one in the video.

This is the one whos 'service' is being touted
Royal London Hospital for Integrated Medicine

https://www.uclh.nhs.uk/our-services/our-hospitals/royal-london-hospital-integrated-medicine
interesting that under the Services tab the link
Chronic Fatigue Syndrome (CFS) Service
doesn't appear to exist(?)

eta: found it by doing a search
https://www.uclh.nhs.uk/patients-an...mation-pages/chronic-fatigue-syndrome-service

 

I recall that you highlighted that it was difficult to see a way into ME/CFS e.g. for a young Doctor willing to work in it. For the physiotherapists, and psychologists, there's an unmet demand i.e. from other patients - waiting lists are very long. Hopefully studies like GWAS @Simon M will help to identify research areas but yes, in the short term, it's difficult to see what the people running ME/CFS multidisciplinary services will do/offer.

 

It is not directly shown in the "Our services" drop down, as they are fairly high level categories. You go to the "Integrated services" section, and it is in there. Also you can get to it via the A-Z route they offer.

 

What I see is an interesting change. The Royal Free used to have a physician led CFS clinic that took part in PACE under Gabrielle Murphy. Murphy is at least completely informed of the research background and was on the NICE committee. But this current blurb seems to be written by people who do not even know what the PACE trials was about. What we seem to be seeing is these clinics being delegated down to people who have no clue.

 

Do you think those who promoted CBT/GET for a long time are now quietly moving on to other things because they can see the end of CBT/GET approaching?

 

A lot of them seem to be retired. There also seems to be a push for therapist-led clinics so physicians do not need to be involved so much. It may be that the rehabilitationists will fill the void but rehab has already been closed down once in history.

 

Rats and ships maybe?

 

Isn't this all part of the next stage of the "plan" facilitated by changes to the healthcare service and the likes of Trudge Chalder and Moss-Morris?

Indoctrinate the next generation therapists who are less qualified and less likely to ask critical questions than the ones who've gone before. Cheaper too.

This is therapy led treatment rather than medicine, no matter what ails you this is what you'll get because the therapist knows nothing else.

Can you imagine bringing your car in to the garage for them to sort out the brakes only to find they unquestioningly fitted a new exhaust because that's what they do. Then they don't discuss the difference between what you asked them to do and what they did. They just wave you off down the very steep hill on the way home. That seems to be what's happening here and for some it may be equally as catastrophic.