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

eta: also available here https://player.fm/series/lets-talk-about-cbt/cbt-for-chronic-fatigue-syndrome

eta2: clearly shows that the CBT for CFS is same as GET
"doing exercise in a safe, regimented way"
TC explains boom and bust, and talks about the evidence base, IAPT.
"majority of people I have seen have really wanted to change, and change is possible" TC

 

The patient says they were able to increase their activity levels and return to work and it's presented as if that was thanks to the therapy.

The evidence however says CBT does not lead to any objectively measured increase in activity levels, and multiple studies show no increase in employment status. Chalder cannot be unaware of this.

The tone throughout is saccharine.

 

Oof this is pretty terrible. I was going to pull out some quotes but I’m quite foggy of late. But yeah it’s not great.


TC: “it’s defined by its primary symptom of fatigue”

Ok then.

 

So they use the misappropriated (...is that the word?) definition of CFS without PEM without making it clear that they are not talking about ME/CFS, claim they understand how to 'exercise in a safe, regimented way' which is something I have been curious how to actually do for over a decade by now (it is not their version of GET, that one simply maximizes the damage and minimizes the potential upsides) and somehow manage to present the entire thing as if CBT is known to be effective which, via consensus of the available evidence, is a completely outlandish statement to make at this point in time.

Which again leads me to the point that seems to come up time and again with Chalder: Is this professional misconduct, especially given her position as a professor? This is not some slight oversight oder selective reading of the literature, she seems to either genuinely not understand the science her field has produced (unless I am completely missing something myself) or she is trying to make money off sick people by shilling unproven therapies.

 

Completely agree, predictably appalling.

TC said 5;03 "There are some people who seem to be managing it reasonably well at one end of the spectrum and then there are other people at the other end of the spectrum who are very severe who may be in a wheel chair or may even be bed bound"

Does she mean to imply to the listener that those at the severe end are there because they aren't managing their symptoms so well, ie it's all down to management? Personality?

TC 18:23, "But I feel sure, in terms of having been in this field for more than thirty years, that it is possible for people to change and that it's possible to be hopeful."

TC 21:07" I suppose to finish on a note of optimism, I would say that the majority of people I've seen over the years, and it's a long time, have really wanted to change and have demonstrated to me that change is possible."

Asked about the evidence base for CBT, TC replied 18:42 "Well there are lots of studies now carried out in different countries around the world, but in particular the UK and the Netherlands, showing that CBT is an effective treatment in terms of reducing the symptom of fatigue and improving disability so that at the end of treatment people are much better able to carry out their normal lives than they were at the beginning. Obviously its not a cure for everybody and people are often left with some symptoms, but a lot of people do improve and there are, as I say, lots of randomized controlled trials demonstrating it's efficacy."

OK I know it sounds very cynical but..... I found Ben's talk rather too pat, very succinctly saying all the right things the psychs would want to be brought up in such a talk and not sounding like someone talking off the cuff with ums and ahs. Could it be that Ben was an actor/therapist using a script? Apologies to Ben if I've misconstrued this.

 

https://twitter.com/user/status/1196788675658600450

 

The host on two occasions suggested to him that he was fearful of increasing activity. I wonder if any of their patients would spontaneously say that without any therapists suggesting it to them.

 

note the hashtag
#mentalhealth

"How can a talking therapy help with a problem that feels as physical as chronic fatigue syndrome?"

sorry, but if that doesn't spell out that it is being treated as a mental health disorder...........

I hope this is being passed on to NICE
@adambeyoncelowe @Keela Too

 

Over 2 decades and still only ever have anecdotes to show for it. Zero refutation of all the evidence against, always trotting out anecdotes and personal feelings, dangling some ridiculous hope that it may just work eventually. 2 decades used in practice in many countries. Thousands and thousands went through those treatments. Still only personal anecdotes. Literal pseudoscience.

It's criminal negligence to continue promoting and defending this. There are actual laws and regulations in place against sham treatments and the reasons to exempt us from those protections are themselves a sham.

 

That literally contradicts the CBT model, that we need our thoughts and behaviors changed. Wanting to change is not consistent with having to change behavior. It undercuts the whole model as fully as dropping actimetry because PACE participants are reasonably active while the very model is deconditioning. This is ridiculous. There is zero self-consistency to everything they say and no one ever asks them relevant questions, only ever fluff their claims as if they had reliable evidence when they have none.

 

That's a blatant lie. No excuse for this. It's a grotesque lie.

 

They are confusing "really want to get better/be well again" with "want to change"

 

How offensive, back to patient blaming - again.

I have really wanted to be cured, still really really want to be cured .. I’ve given my all to try and be well.

 

Yes I found that offensive too. With the implication that those that don't get better simply don't want to change. It's all in the patient they need to change and, of course, change only occurs when the person wants to change.

Edited to add - not being sarcastic in the last sentence - people DO only change when they really want to. But it's not me that needs to change TC... its you.

 

People can and want to change sounds like pwME are viewed by BPSers as they would view criminals, or persons with very serious character flaws etc.

"Wanting to change" seems to be a new spin on pwME. It used to be we were unknowingly misguided about our belief in having a physical disease. Now we seem to know we are misguided, and "want to change".

Now we are "admitting" our flaws, or faulty beliefs??!!

 

It's not personal change we want, but confirmed, evidence-based treatment for a serious biomedical disease. All the counseling, and GET in the world will not cure ME.

 

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.

 

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.
@Russell Fleming @Action for M.E. @phil_in_bristol

 

Couldn't agree more, if the UK charities had done their job over all these decades such audios would be a thing of the past. OK I know they are up against the power of people like TC and the establishment but in my opinion they have been woefully inadequate in their attempts to help and protect PWME over the years, whilst happily taking our money!

Perhaps @PhysiosforME could intervene too?