CBT for CFS Therapist Manual PAEDIATRIC CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK Loades, M.E. & Starbuck, J. | 2020

For many young people with CFS/ME, recovery is not about a ‘going back’ to who they used to be, but a ‘going forwards’ to a new version of themselves whom has been through what is often reported as an enriching and developing experience, and who has progressed developmentally too

What a bunch of crap. :mad:

Amw66 said:
Redefinition of recovery.
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Games with words and statistical thresholds are their core tools.
 
Peter Trewhitt said:
no indication of source materials or further reading
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at the main page where this is linked to, there is this
Young people and families are very welcome to look through our service leaflets and information contained here which may be more helpful.

In addition, there is an excellent book written for young people and families which we highly recommend: 'Overcoming Chronic Fatigue in Young People: A cognitive behavioural self-help guide', by Katharine Rimes and Trudie Chalder.
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which are just as bad, but aimed at patients/carers.

If any physician did want to know more, then they are only going to find more of the same through this site;

via the 'services leaflets and information' link takes you to the main clinic page and the
'Research into the causes and treatment of CFS/ME'
link, where the only 'research' listed is Crawleys.
 
Peter Trewhitt said:
Obviously it was never intended to be a scientific text, but is it normal for such a handbook to be quite so unhelpful for those using it who might want to understand more. There is a role for propaganda, but how healthy is it for practitioners to be guided away from any thing beyond pure propaganda.
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It's much worse than that, early in the document is a disclaimer saying they don't stand by any of it, it's just for information and should not be considered official, that therapists should be free to do whatever they want. Not considered official other than actually being used in practice, influencing real people's lives, of course.
Note: This manual is not intended to be prescriptive. It aims to summarise current practice, which is individualized for each young person depending on their needs, formulation, developmental stage, interests and context. Individual therapists also have their own styles and preferences, so this is intended to be used flexibly but with fidelity. We also include links to some of our own resources and information sources, as well as some of other reputable organisations.
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They literally don't even stand by this, they're just saying it, they report, you decide. Just like the advice for exercise in COVID-19. They want all the power that comes from giving professional and none of the responsibility. Complete dereliction of duty. The system of medicine has broken down entirely here. Not in part, completely.
 
Sly Saint said:
where the only 'research' listed is Crawleys.
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A saint's work has no peer.

so this is intended to be used flexibly but with fidelity.
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So to use synonyms, be adaptable and accurate then. I'm not really clear on that.

We will be investigating whether the virome in children with CFS/ME is any different from the virome in their brother and sisters (who do not have CFS/ME). We will do this by looking for the genetic 'signatures' of viruses in DNA extracted from saliva. We are running our study with the help of the Bristol Biobank. This is a place where samples for lots of different research are stored all in the same place.
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* Bolding theirs. Interesting that. In all the many years Bristol has been churning out ME/cfs 'research' they are just NOW deciding it's time to have a look at something outside the endless refinement of GET/CBT. And they're using a BIOBANK. Just like, you know, those other real researchers. Thus we can be sure their research is also real and will yield high quality reliable data.

They're doing this of course for the same reason they're trying to co-opt neuroimaging -- to prove their for real and doing real research with real data and real reliable outcomes that prove their mindless MUSings on a topic they seem to know less than nothing about.
Edit: fix sp
 
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Barry said:
This is GET basically, conveniently overlooking those who might be crippled by it long before getting any where near "8 hours' high energy activity per day":
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Starting at 4 hours per day, increasing by 10% every two weeks, and in a year they'll be doing an impressive 48 hours of high energy activity per day! ;)

Seriously though, an increase of 20% per week means reaching the 8 hour target in 4 weeks.
An increase of 10% per fortnight means reaching the 8 hour target in just over 14 weeks.

They also state
1. The recovery journey takes a matter of months, or a year, or perhaps longer. It is not something completed in weeks.
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Which contradicts the above advice (10-20% increase in activity every 1-2 weeks).
 
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P11 said:
What is CFS/ME?: Psychoeducation about CFS/ME Definitions and diagnosis Chronic Fatigue Syndrome (CFS), sometimes referred to as Myalgic Encephalomyelitis(ME), is a health condition characterized by extreme tiredness.
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Post-exertional malaise; the fatigue is worsened after increased activity. This can show itself 1-2 days after the busy time and can take a few days to recover from.
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Note the focus on fatigue and only lasting a few days. No mention of long term harm that exercise can cause. I've experienced harm from exertion that has lasted over a decade and is probably permanent. They clearly don't believe in ME but when asked they deny it and say "We're not saying it's all in your head". I call it gaslighting.

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That diagram just proves that they have not changed their act one bit in the 30 years since I first became aware of it. They just keep doubling down.

Why is so much of mainstream medicine (in the UK at least) still bending over backwards to give them the benefit of the doubt?

It's nucking futs.
 
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