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

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

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

Royal Free London chronic fatigue syndrome/ME research project: the PACE trial
The Royal Free London fatigue team has been involved with chronic fatigue syndrome/ME research projects, such as the PACE trial which involved:

  • testing and comparing the effectiveness of four of the main Royal Free CFS/ME treatments available for sufferers from; adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and standardised specialist medical care.
  • trial participants being randomly allocated to one of the treatments for a 12-month programme involving appointments with specialist doctors and therapists
  • over 600 participants in the 5-year trial, aged 18 and over, in Scotland and England
  • analysing and publicising of the results. These were presented in The Lancet ‘Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial’ Read about the PACE trial in the Lancet article.
Cytokine responses to exercise and activity in patients with chronic fatigue syndrome/ME
This purpose of the PACE trial was to better understand the possible causes of chronic fatigue syndrome. Some of the findings were as follows:

  • A common symptom is to feel worse after a small amount of activity.
  • If this symptom is apparent during an infection, immune hormones called cytokines may cause it. An example of a cytokine is interferon.
  • Chronic fatigue syndrome/ME can be brought on by infections.
  • Exercise in general can cause a release of cytokines, especially in inactive people
  • The study investigates whether physical activity increases cytokine levels and the activity of their genes in people with CFS/ME, more than in healthy sedentary people, and whether this ties in with the increased symptoms after activity.
Cognitive behaviour therapy and graded exercise therapy can safely be added to standardised specialist medical care to moderately improve outcomes for chronic fatigue syndrome/ME, but adaptive pacing therapy is not an effective addition.
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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.
 
Simbindi said:
But they have the research to back it up....:rolleyes:

https://www.royalfree.nhs.uk/services/services-a-z/fatigue-service/cfs-me-research/
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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.
 
Royal Free London said:
Cognitive behaviour therapy and graded exercise therapy can safely be added to standardised specialist medical care to moderately improve outcomes for chronic fatigue syndrome/ME, but adaptive pacing therapy is not an effective addition.
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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.
 
This purpose of the PACE trial was to better understand the possible causes of chronic fatigue syndrome.
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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.
 
rvallee said:
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.
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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:

upload_2021-8-6_23-10-54.png
 
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dave30th said:
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.
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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

Overview

Our service provides assessment and treatment programmes for people with chronic fatigue syndrome. We offer evidence-based treatments that are routinely evaluated. Our goal is to increase the person’s functioning and reduce the severity of their fatigue.

We also offer assessment and treatment to people with fatigue associated with a chronic disease such as rheumatoid arthritis, multiple sclerosis and HIV. Our team is at the forefront of research, continually testing new treatments and new ways of delivering them.
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https://www.slam.nhs.uk/national-se...hysical-symptoms-research-and-treatment-unit/

Overview

Our service is an internationally recognised research and treatment unit, 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.
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Further info on SLAM:

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

About the Unit

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, which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME. Some individuals receive CBT over the telephone if they live a long way from the unit or find travelling difficult.

We also provide GET (Graded Exercise Therapy)

We are now also 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.

Adolescents with CFS/ME may be eligible to take part in our research.
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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...).
 
Sly Saint said:
Unbelievable..............


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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?
 
Simbindi said:
But they have the research to back it up....:rolleyes:

https://www.royalfree.nhs.uk/services/services-a-z/fatigue-service/cfs-me-research/
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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
The Royal London Hospital for Integrated Medicine (RLHIM) is a centre for evidence-based practice, education and research, specialising in chronic and complex medical conditions.

Our mission is to provide a person-centred, holistic approach, including self-care, in order to help people with chronic and complex medical conditions live well and feel better.

Our approach considers the whole person and their environment in the quest for optimal health and wellbeing.

In order to achieve this, we provide a combination of lifestyle strategies, medical, physical and psychological treatment, as well as advice on safe and appropriate use of complementary therapies. We also deliver and encourage self-care approaches which can continue to be used by patients after discharge.
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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
 
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Jonathan Edwards said:
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.
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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.
 
dave30th said:
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.
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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.
 
strategist said:
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?
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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.
 
Jonathan Edwards said:
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.
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Rats and ships maybe?
 
Jonathan Edwards said:
What we seem to be seeing is these clinics being delegated down to people who have no clue.
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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.
 
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