Illness beliefs and treatment outcome in chronic fatigue syndrome, 1998, Deale, Chalder and Wessely

Do we know what ‘outcome’ means here? What did they measure?

 

They measured their own hubris and liked what they saw .

 

I literally have no beliefs. I am a universal agnostic. I don't even understand the concept of believing in something, it strikes me as quite silly (although I do understand and respect that for a lot of people this is definitely important) because how the hell would I just know the answer to complex questions? Makes zero sense to me. I know I'm weird about that.

So this makes those long-standing claims so damn weird to me. I think I said it before, but I literally rate a complete zero on the usual checklist of stereotypes and psychosocial factors. Not a single one of them. Which doesn't even seem possible simply through chance, considering how most of them are completely generic, and the main factor (let's be honest here) literally has a 51% chance.

I'm not a woman. Was not middle aged when I got ill. I did not have a severe acute illness before. Never had trauma, I couldn't even name a single 'traumatic' event in my life. Had and still have a great family. I did well at school. Comfortable middle class, enough to feel its freedom, but not too much that it screwed me up. And I definitely do not have beliefs, about anything, and I am probably one of the least biased people in the world. I don't even understand the idea of thinking I know the answer to things I don't understand, or about wanting specific answers to be correct. I don't want to intuitively guess stuff, I want to know stuff. How it really works. For real.

But on the belief scale, I am definitely in the bottom 0.01%. I simply don't have any. It makes all those claims about my life experience sound completely clownish, especially considering how both (and oddly) specific and generic they are.

 

@Hutan found a link to the full version on Wessely’s webpage:
https://www.simonwessely.com/Downloads/Publications/CFS/88.pdf

 

This is the paper on the trial:
https://psychiatryonline.org/doi/epdf/10.1176/ajp.154.3.408

 

Same. My entire outlook on the world before getting ME was a sort of external world sceptic, moral non-realist, post-modernist and post-structuralist outlook.
Basically a lot of buzzwords for saying everything is relative and we can’t even really know if there is anything real or such thing as objective truth.

In a philosophical sense, my only belief is the we cannot know if literally anything is true because every information we have is shaped by our percetions which are in turn shaped by cognitive processes (whatever that means and that’s really upto debate).

 

15 is Oxford. 16 is this: https://pubmed.ncbi.nlm.nih.gov/1322076/

 

This means that we have the issue of an unblinded trial with only subjective outcomes. This makes the results notoriously unreliable.

There is no reason to not using objective measures like walking distance, employment, etc.

 

More from the trial:

There were no attempts at blinding within the research team, even though only one of them acted as the therapist.

The bolded part shows how the intervention might cause the participant to report that they can do more, regardless of any actual changes - because they have been told that that’s how things work and that that’s what they should expect to experience.

Any doubts about the effectiveness of the treatment was labeled as unhelpful, and actively discouraged as a part of the treatment.

Patients made action plans for how they would continue to convince themselves that they could do more after the treatment.

The control group:

The control group was seemingly not told how to think or behave.

All in all, the contents of the intervention make the participant’s answers even more unreliable than what they already were as subjective reports.

In short, it is fatally flawed.

 

Oh, that’s easy:

From the SF36 thread:
https://www.s4me.info/threads/what-do-people-think-of-sf-36.31504/page-5

 

That fits with the theoretical idea at the time, when they first started to promote CBT for ME as treatment: that the treatment was cost-effective as it would have ongoing positive effect; they would help the patient over the first bump, after which the improvement would go on because of the Operant Conditioning (so basically the ongoing discovery that continuing activity while feeling sick worked and getting positive reward, expanded activity ability, from it) and the patient having been taught to "correct" their wrong cognitions when they occured.

See Sharpe et al, published just the year before. They also saw ongoing improvement after 4 months, 16 sessions, of CBT:

"Evaluations took place before randomisation, after the initial treatment period (five months), at eight months, and, finally, at 12 months after entry.":

 

I have often wondered about these early studies. Fulcher and White 1997 is similarly promising - the exercise group had a 20 point increase in SF36 PF score at 12 weeks (compared to 8 point increase in the control group). Compare this to the GET group in PACE who had an increase of about 11 points at 12 weeks. Though none of the PACE arms got to the 72 reported for CBT in Deale et al. 1997.

My interpretation is referral/selection bias: these were small studies with 30-ish people per group who had been referred to psychiatrists/CBT therapists with fatigue. While those with current psychiatric disorders were excluded from Fulcher and White, and those with severe depression or somatization disorder were excluded from Deale et al. 1997, I suspect that the group of patients they saw, and see, is quite different to the group of patients who would be referred by their GP to, say, an infectious disease doctor or an immunologist.

The booklet for Chalder and Wessely's clinic can be downloaded here:
https://www.yumpu.com/en/document/v...atigue-service-booklet-slam-national-services

There are two case studies/testimonials at the back, written by patients who benefitted. I don't identify with them at all. I did not benefit from CBT or GET.