David Tuller: Trial By Error: Steve Brine's Troubling Claim in Parliamentary Debate on ME

Thanks, Michael!

About the association, the literature from this group is replete with these findings. Much of this stuff is more than a decade old. So research "has shown" this in the past. I'm not up-to-date on what the Vercoulen folks have done. I'm not sure whether or not any such data has been recently published, or whether this group of researchers overall has stopped making that claim. I certainly haven't seen them publicly withdraw the argument, although maybe someone has somewhere. In any event, in 2012 in METRIC they were still making the claim by citing the older studies.

 

I think they have. They've indicates this in their updates of their CBT-model.

Knoop et al. 2010. The central role of cognitive processes in the perpetuation of chronic fatigue syndrome.
“There is less support from treatment studies for the role of the other perpetuating factors that have been postulated in the models of CFS, like a reduced level of physical activity, deconditioning, and the tendency to attribute the illness to a physical cause. The first two did not mediate the treatment effect and the last one did not predict the response to CBT and was not changed after CBT.”

Wiborg et al. 2012. Towards an evidence-based treatment model for cognitive behavioral interventions focusing on chronic fatigue syndrome.
“A study by Deale et al. showed that somatic attributions of CFS patients are not affected by cognitive behavior therapy (CBT). Without such a change, a factor cannot account for the effect of treatment. This finding is also in accordance with the model of perpetuating factors in which causal attributions are not directly linked to fatigue or impairment [11]. Consequently, we excluded this variable from further examination.”

Heins et al. 2013. The process of cognitive behaviour therapy for chronic fatigue syndrome: Which changes in perpetuating cognitions and behaviour are related to a reduction in fatigue?
“somatic attributions were not analysed, as previous research had shown that somatic attributions do not change during treatment, so they could never be a mediator of CBT.”

In their updated model it's no longer about reversing deconditioning, increasing activity levels or changing somatic attributions. It's mostly about focusing less on symptoms and self-efficacy (basically the placebo respons).

 

Thanks for that. Interesting then that she still included it not only in 2012 but didn't see fit to remove it in the 2018 review.

 

Where exactly in METRIC is this said?

 

It's on a page where you click an image to reveal even more information. In the section on CFS/ME model, I think.

 

Thanks.

I was reading the pdf provided by Tom, so I overlooked that.

I keep getting this error message, if I want to access the actual website. Anyone else has this or knows a way around it?

 

What I don't understand is why Brine would mention the RCGP training material in the first place. Did he or whoever wrote the statement genuinely think that drawing attention to this material would offer any reassurance to PWME, especially in the light of the trashing of PACE, rewriting of the NICE guidelines and the tone of the previous parliamentary debate?

On the issue of shared decision making: Some clinics require that the patient has to comply with the treatment approach in order to access care. My local clinic states something to this effect in the appointment letter. I've never seen it in any other clinic appointments that I've had for other health health issues. So failure to comply with treatment approach not only has an impact on benefits and access to social care but also access to specialist M.E. care. This is even though the NICE guidelines state that a patient can withdraw from any aspect of care without it affecting other aspects of care.

 

I haven't read the whole thread yet, but just want to query something, where Dave says
"“Patients can find themselves in a vicious cycle. Excessive rest in healthy individuals can have the following effects:

Cardiovascular deconditioning
Reduced exercise tolerance
Muscle pain (may be delayed) on activity
Weakness, dizziness, postural hypotension
Changes to body temperature regulation
Loss of concentration and motivation”

This is undoubtedly true."

Is that right?

 

The insidious thing about undermining the capacity of pwME to make decisions about treatments in this underhand way, is not only does it give the view that ME is a psychological or psychiatric illness that removes the patients ability to reason, any objection or argument on the part of the patient will be seen as a symptom of such a psych. condition.

This is not only grossly unfair and harmful to patients, but is clearly intended to colour and manipulate the physician's view of every ME patient.

 

You mean is that right for healthy people? Severe deonditioning can has serious impacts--that's what is "undoubtedly true." But this has nothing to do with ME, so it is irrelevant information.

 

I can't find where this was said, I thought it was the GMC, but it could have been somewhere else. It chilled me at the time.

When talking about the Sofia Mirza case something like this was said "Every patient has the right to refuse treatment but to refuse GET and CBT was so perverse that in itself it was enough evidence for the patient to be sectioned"

 

It seems to be part of Government policy/practice when commenting on any issue to try to convey that the Government fully understands the issues and constructive action is being undertaken. [added - To do that in these circumstances they obviously were scraping the bottom of the barrel.]

Presumably whoever briefed Brine or wrote his statement has not grasped that this training material exemplifies the very problems that the motion being debated was raising. So either that person (or those persons) has been completely taken in by the BPS propaganda or is a fully paid up member of the BPS cult.

 

Thanks @Peter Trewhitt . I wondered if I'd missed something obvious, as surely whoever wrote the briefing must have anticipated that the training material would be subject to increased scrutiny.

 

With our current government's incompetence it is probably better not to expect them to anticipate anything.

I have no idea whether Brine would have been briefed by a long standing civil servant in the Dept of Health, someone recently brought into the Dept of Health by the current government to research particular issues or by an external expert consulted on that specific issue who could be from the RCGP, an academic or a senior clinician.

[added - I suspect that the information used to brief Brine was so biased towards the BPS position that it never occured to the person compiling it to question the RCGP material.]

 

That's more about their treatment model than a natural association. It is all so complicated though, especially when they seem to try to imply that any natural association has implications for treatment.

I'm not sure I've ever looked closely at those early papers that did claim to find an association - it seemed so plausible and uninteresting that those who felt their exhaustion was a result of psychosocial factors would be a group that would be more likely to improve, especially when the only treatments available were those intended to assist with psychosocial issues! It wouldn't surprise me if there were problems with that early work though.

 

Update on the blog Trial By Error: Steve Brine's Troubling Claim in Parliamentary Debate on ME

Update on January 29: I love how patients keep me on my toes. A savvy reader pointed out to me today that even members of the GET/CBT ideological brigades have dropped the notion that attributing symptoms to a physical cause itself leads to a poor prognosis.

...
This situation is getting curiouser and curiouser.

 

It came from the HoC Library.

Number CDP 2019/0014, 22 January 2019

By Dr Sarah Barber
Dr Rachael Harker
Nikki Sutherland

At least that's what I'm assuming - think it was given to anyone in HoC who asked for it?

 

A quick google of those names would suggest that the "Dr" is not necessarily medically related. They appear to have been involved individually or together, with briefing papers on drugs policy, fly tipping and bee population. It seems reasonable to assume that there is no specialist knowledge.

 

"We have rechecked our calculations and it turns out that the end of the world will actually happen next week, as predicted. Every other detail relevant to last week's misprediction remains accurate and should not be a matter of concern, as we have demonstrated at last month's misprediction adjustment. Please report any neighbor who questions our judgment, they are obviously mentally unstable and will be removed swiftly."