Podcast: CBT for Chronic Fatigue Syndrome: Dr Lucy Maddox, Trudie Chalder

Snow Leopard said:
It's funny how these people often talk about "boom bust" and "fear of increasing activity" in the same breath, despite the fact that they are mutually incompatible.
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Attended a satellite clinic to one of the main English clinics in 2014.

I was totally confused, even then. How am I supposed to not ‘boom and bust’ when you have told me to increase my dog walk every 14 days (and that took no account of whatever else was going on in the household).

I did my own thing, luckily. Still hasn’t cured M.E. though.
 
I don't think TC et al have ever really grappled with dealing with anyone but the least severely ill (who are still very ill and deserve better than TC). I don't think they really know anything about the severely ill from any experience as health care providers/researchers.

One of the things that took me a long time to realise was that whenever I had a lifting of the heavy fog of ME and felt better it should never have been equated as being more well.

I still get the occasional few hours (rarely) when the fog lifts to a light mist. Now I know to call it what it is. A window of less suffering and remission of symptoms that is in no way related to my body somehow repairing itself and an indication that I am healing.

I still use those moments to do more. I can't help myself. I do pace in those rare moments too. When the window closes I don't think it's necessarily due to PEM since I otherwise feel unwell all the time.

Over the years the BPS cabal have in fact listened to the ME community enough to hone their propaganda pitch to sound more credible. We all know how wrong they are to promote their crap. I can't help but think after all this time seeing this sort of nonsense that the problem exists (and therefore needs at least in part) to be addressed in a larger context than the cabal themselves.

They carry on unimpeded (mostly) and in plain sight because they are well protected.

While I don't think much of most psych research my mind starts playing with the idea of a research project to understand how some people can so easily throw other human beings under the bus (metaphorically).
It's not a serious consideration. There is no easy answer to this any more than the easy answer of a little CBT for ME.
 
Snow Leopard said:
It's funny how these people often talk about "boom bust" and "fear of increasing activity" in the same breath, despite the fact that they are mutually incompatible. Yet objective evidence of activity levels suggests that neither is the norm amongst patients.
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Well, the PACE team pulled off dropping all objective measurements for the treatment arm built on an assumption of deconditioning based on the written statement that in their opinion the participants were reasonably active and so there was no need to measure their activity. Both deconditioned and reasonably active. Both sick enough to enter the trial and well enough to be considered recovered at the end.

When you pull off something like that, including through multiple peer and ethical reviews, you kind of lose any concerns about being self-consistent and just don't bother anymore. At this point just go all in on the BS, it clearly makes no difference since we have been exempted from all normal ethical and scientific protections.

The porridge isn't too hot or too cold, it's both, but it's not just right either. Not surprising that in practicing medicine without any concerns for the patients they end up doing "science" without any concerns for, well, science. Hubris is always the fall. Unfortunately meanwhile it's millions of lives being destroyed to preserve that little kingdom of mediocrity.
 
Amw66 said:
This is the kind of thing that would be good if charities commented to kick into touch. When this kind of information goes unchallenged nothing changes.
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Back in 2016
Local group ends its 11-year relationship with CFS unit at King’s College Hospital | 5 July 2016
https://www.meassociation.org.uk/20...s-unit-at-kings-college-hospital-5-july-2016/

Members of a London M.E. support group have voted overwhelmingly to end an 11-year relationship with senior staff at the King’s College Hospital CFS unit – after rejecting theories advanced by King’s that ME/CFS is a complex of false illness beliefs and avoidance behaviour.
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Catherine Hale argued that it was high time to draw a line under this cosiness.
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“I do not want the CFS unit to claim support from our group for their theories of ME/CFS through our continued engagement with them. I would not wish the existence of this relationship to give them any advantage in securing public funds for further research into CBT and GET.”
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This is the bottom line and the charities and other ME patient groups need to understand it.

But it seems that these so-called 'experts' still get to say whatever they like whether they have the support of patient groups or not.

eta: see my post here https://www.s4me.info/threads/dialo...os-released-sept-2019.6186/page-4#post-205561
and here
https://www.s4me.info/threads/dialo...os-released-sept-2019.6186/page-4#post-205668

if the video on the NHS site was TC (an 'expert') saying what she is saying on this podcast and in other talks (see https://www.s4me.info/threads/13-ma...journey-over-30-years.5576/page-3#post-152193)

then there would be an uproar and I imagine a lot of ME/CFS patients would not wish to go for 'treatment' of CBT and GET at the various clinics.

It would be there for all to see/hear.
 
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KCL PSYCHOLOGY STAFF ELIGIBLE TO SUPERVISE (as at November 2019)
https://www.kcl.ac.uk/psychology-sy...isors-psychology-department-november-2019.pdf

Dr Kate Rimes:
Mindfulness based approaches. Perfectionism. Self-critical thinking. Shame.Emotional
processing. Chronic fatigue syndrome and other medically unexplained symptoms.
Depression.
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Prof Rona Moss-Morris:
Medically unexplained conditions such as chronic fatigue syndrome (CFS), irritable bowel
syndrome (IBS) and post concussion syndrome. Understanding adjustment to chronic
illness from both the patient and family perspectives. Developing and evaluating self-
management and CBT based interventions for people with chronic illnesses such as
multiple sclerosis, IBS and CFS. Developing ways to measure people’s perceptions and
responses to their symptoms and illnesses
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Trish said:
Has anyone read Chalder's book? How bad is it?
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can't find a preview and it costs £11.80
This is the write up on Amazon
Chronic Fatigue Syndrome (CFS) is a debilitating illness, characterised by severe exhaustion and flu - like symptoms affecting possibly 10 per cent of the UK population, for which conventional medicine currently has no cure. Now the authors, who practise at the CFS Research and Treatment Unit, University of London, have developed this new self - help guide. Via recognised CBT techniques that change our attitude and coping strategies, this approach is successful in breaking the cycle of fatigue, with a reduction in symptoms and disability in up to two - thirds of sufferers. Improving sleep patterns Practical strategies for balancing activity and rest Dealing with blocks to recovery Stress and ways of coping How relatives and friends can help.
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no reviews yet.

they seem to re-publish every few years.

This year there is a 'second-edition'(?) for a mere £3.99(e-book) but it only has Mary Burgess as author
https://books.google.co.uk/books/ab..._2nd_Edition.html?id=T2dBDwAAQBAJ&redir_esc=y

you can view some of the content on that link
(looks like the standard bPS 'vicious cycle' chronic fatigue stuff)
eta: but again as usual it mixes use of CFS and chronic fatigue
 
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I do remember flicking through it a couple of years ago and it being as dreadful as expected. I had bought it in the early days at huge discount in "Naff Books are Us " or similar, I probably still have it somewhere..

(Not saying that I am anti discount bookstores)
 
Found this site Psychwire;
apparently you can ask questions
"You need to be signed up as a mental health professional to ask a question

Ask Trudie Chalder about CBT for chronic fatigue
How can CBT assist with the psychosocial and behavioural aspects of long-term health conditions such as chronic fatigue? ASK Professor Trudie Chalder now."

https://psychwire.com/ask/profiles/bx7x60/trudie-chalder

https://psychwire.com/ask/topics/wojsw8/ask-trudie-chalder-about-cbt-for-chronic-fatigue

@Joan Crawford @Brian Hughes @Carolyn Wilshire
 
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