Michael Sharpe skewered by @JohntheJack on Twitter

Invisible Woman said:
They have always attacked charities, though. Usually, by claiming that being a member of a charity or patient group reduced your chance of recovery.
Click to expand...

Nasim Marie Jafry said:
They have attacked being members of self-help groups as they claim this will only reinforce symptoms.
Click to expand...
These assumptions were based on results of questionnaires given out at ME centres. They found that people who were members of self-help group showed less improvement than those who were not. The psychs who support CBT etc. assumed, with their usual persecution complex, that this was due to patients being warned off the therapies, and having nothing but contempt for psychiatric conditions.

Of course, there are always other explanations, and a proper study would have considered them all. One obvious one is simply that all that was offered at these ME centres was a talking therapy, part of which was to help patients understand the condition, to accept the need for careful pacing, and to avoid boom and bust. If, in the long time leading up to the specialist appointment, patients joined support groups, they would have had access to all of this. By the time they got to see a specialist, they would already be adjusting to the condition.

This presumption of persecution was repeated in Chalder's analysis of key factors in improvement in the PACE trial, where again, membership of support groups was assumed to have a negative effect.
 
Graham said:
These assumptions were based on results of questionnaires given out at ME centres. They found that people who were members of self-help group showed less improvement than those who were not. The psychs who support CBT etc. assumed, with their usual persecution complex, that this was due to patients being warned off the therapies, and having nothing but contempt for psychiatric conditions.

Of course, there are always other explanations, and a proper study would have considered them all. One obvious one is simply that all that was offered at these ME centres was a talking therapy, part of which was to help patients understand the condition, to accept the need for careful pacing, and to avoid boom and bust. If, in the long time leading up to the specialist appointment, patients joined support groups, they would have had access to all of this. By the time they got to see a specialist, they would already be adjusting to the condition.

This presumption of persecution was repeated in Chalder's analysis of key factors in improvement in the PACE trial, where again, membership of support groups was assumed to have a negative effect.
Click to expand...
being in a support group would make them less susceptible to being influenced to change their questionnaire responses - sounds about right to me
I took my final questionnaire home and posted it in - they were expecting everyone to sit there fill them in and hand them back to the staff.
 
That's the first I've heard that I invented the term. Frankly, I see no real difference between "unhelpful" or "dysfunctional" illness beliefs and false ones. Reading the manuals for CBT and GET and all the previous studies makes it very, very clear that the illness beliefs are presumed to be untrue--i.e. false. People are presumed by the investigators and by the model not to have the organic illness that they believe they have. Isn't that then a "false" belief? So if I did coin the phrase, I would have no problem defending it. Someone would have to search all my posts since October 2015 to document if it was in fact the first do use it. I haven't done that and don't plan to, but Professor Sharpe can if he chooses to.
 
In 2005 Sharpe had this (slightly one-sided) exchange with a patient, and the patient spoke of 'false illness beliefs'. I'm sure I've seen may others use the term too.

http://fumblings.com/weblog/archives/2005/11/a_response_to_m.html

I don't think I've seen that PACE researchers use it themselves though (Sharpe certainly doesn't seem to think that they have), so I reckon it's best to try to avoid the term when criticising them.
 
This idea that membership of a support group was likely to be harmful was widely disseminated at an early stage. Today I came across this clearly unsourced, second hand statement by two of whom I had never heard.

"Furthermore the patients' illness behaviour is likely to be perpetuated by adhering strictly to the advice given by the powerful self-help group the ME Society (sic) which advocates total rest."

Psychiatric perspectives: an overview. TO Woods, DP Goldberg British Medical Bulletin 1991 pp908-918

The rest of the article is down to the same standard.

Edit typo
 
Last edited:
Regarding the phobia vs fear-avoidance discussion above (a few pages above now!), I was thinking about this 2005 study by Gallagher et al, where “et al” includes Weir (who does not favour GET/CBT) and White (who does) https://www.ncbi.nlm.nih.gov/pubmed/15992572

Basically they took 42 people with CFS (their term, Oxford criteria, 57% met Fukuda) who did not have a psychiatric co-morbidity and 42 sedentary controls and measured their heart rate, galvanic skin resistance and amount of activity undertaken as well as the usual questionnaires the day before, just before, during and after an exercise challenge. Long story short, there was no evidence of a phobia. Nor was there evidence of increased deconditioning in the patients, or significantly reduced activity.

They explain why their results may differ from previous studies whose results had been interpreted as suggesting “kinesiophobia” as follows:

“Because patients with comorbid psychiatric disorders were excluded, it is still possible that kinesiophobia is important in comorbid patients. This might explain why kinesiophobia, as measured purely by self-reported questionnaires, was found to be important in two previous studies that did include comorbid patients…Our data suggest exercise phobia is unlikely to be a maintaining factor in CFS alone, without the presence of a comorbid disorder. The other contrast with previous work is that we used objective rather than subjective measures of avoidance and arousal.”
Click to expand...

In the final two paragraphs the shift from phobia to fear-avoidance happens. The second last paragraph contains the meat of how the findings were interpreted in terms of the CBT/GET/BPS model, here's the crux:

“The results from the psychological measures lend support to some of the perpetuating factors suggested by the cognitive–behavioural model for CFS being related to mood and somatic focusing”
Click to expand...

And they conclude:

“We conclude that CFS, without a comorbid psychiatric disorder, probably is not an exercise phobia, and fear avoidance is perhaps less important in CFS than chronic pain disorders [11]. The cognitive behaviour model may need to be adapted to include beliefs and interoceptive sensitivity for avoiding activity [40].”
Click to expand...

The "cognitive-behaviour model of CFS" seems to have dusted itself off, switched "phobia" to "fear-avoidance beliefs" and simply carried on. With a little note to self to avoid objective measures in future.
 
Sleepy2right said:
Ok, I'll throw a wild one out there, could he have been a reviewer of the paper? Correct me if I'm wrong but the list of reviewers is still unknown and not being an author he would have been eligible? Probably me being too cynical.
Click to expand...

That’s one of the possibilities I was alluding to – but I didn’t want to make myself look like a prat if it was a ridiculous suggestion. @Lucibee, who is much more knowledgeable than me, seemed to think it was more innocent that I was implying. Any thoughts @Jonathan Edwards @dave30th @Carolyn Wilshire?
 
You must log in or register to reply here.
Back
Top Bottom