Watt from MRC defends PACE in letter to Times

CFS Patient

Some years ago (2012)I developed pretty much the full range of CFS symptoms.

I still even 6 years later cannot do more than 45 minutes of mild exercise and have withdrawn from a very wide range of social activities. In short things remain very tricky. A couple of things helped.

1. Tai Chi.
2. Getting a dog.
3. Having a wife.

The most important facilitator of coping was to have sufficient financial resources to have options that give a freedom from basic economic worries.

What did not help in any way whatsoever were the medical professionals that I encountered along this road. My GP is overworked and cannot really analyse the problem.

Very little NHS resource is available even in London. My referral to the Hospital for Integrated Medicine was an insight into how not to address this problem. The Consultant had no ideas beyonf CBS and GET...thrown in with dietary advice.

I was asked to participate in the QMC PACE survey and given what (from memory) was a 60 page questionnaire. After looking at a number of questions I assessed it as second rate social science. Many questions were closed, leading and teleological.

I threw it in the bin. No follow up crystallised

If that was my reaction then how many others invited to participate also thought it was worthless.

My question here is though..if Fiona Watt assesses CFS as a research priority then how much is spent by the MRC on it? Is it as much as £1 in £10,000? Her claim is that such research is a "priority". What constitutes a priority? Is it in the top 200 areas of funded research? Does it secure one basis point of the MRC budget per annum?

My intuition is that psychological factors contribute to the deterioration of a subject that develops CFS. There is a physiological basis to the syndrome. Our immune system is degraded. The reversal of that degradation should be the subject of research that will restore our life chances. Real medical research not psycobabble from aspirant social science Phd students hopping onto unproven and unwanted nostrums is what we need.

 

Not to mention that MRC - and the other funders of PACE - pissed £5 million down the drain, which could have been usefully used for biomedical research that might actually have benefited ME patients. Beggars belief.

 

Could be anything from £2.8m to £4.4m, even upwards of that if the funding has not been fully disclosed. We still don't know how much it cost and the funders are not giving us all the proper answers.

 

Gullibility

I think that it is important not to underestimate the CFS patient community.

At the Hospital for Integrated Medicine a number of the patients I spoke to also thought CBT and GET was not the path needed to extricate ourselves from this problem.

Like me they just on to what they receive. It might be almost worthless but what else is there available? Inertia and the lack of options keep us turning up to the Clinic. In my experience there is no exaggerated belief in the nostrums dispensed from those in white coats.

 

?

 

Was too late to add my name, but support this 100%, thank you, John, for brilliant letter.

 

I keep trying to get the Royal Statistical Society interested, but keep failing. I would have thought that the number of gross statistical errors and the failure of the medical world to get to grips with it would have been just up their street. Then when the tribunal ruled to release the PACE data, I thought that would be an important event.

When the data was being analyzed I asked whether they could suggest any statistician to approach to check our results, and again, they didn't want to get involved.

I think they are unwilling to rock the boat.

Sorry @JohnTheJack , I'm too late to ask you to add my name.

 

Hi, it's University of California, Berkeley. It's the Berkeley campus of the University of California, which has a batch of campuses around the state.
There is no Berkeley University (well, there's some private online operation, I think, which is no relation).

 

and again, I would say "government health agencies" in the US. Most agencies haven't had anything to do with it, so it's not right to say "every" government health agency has rejected it.

 

Oh, I see I missed the cut-off time. I was going to add my name with those two changes. oh, well.

 

Maybe she just fronts what might be a collectively generated response.

 

Now that the reply has been sent it seems worth looking further at the question of the degree of independence between the researchers and Sensky as previously mentioned at #65. I have found further instances of Sharpe and Wessely referring to that paper from 1990, and it seems fairly central to their model.

"Personality factors, which include a tendency to respond to illness with particular types of cognitions (attitudes beliefs and thoughts) and behaviour, have been shown to perpetuate disability, and to exacerbate symptoms in many chronic conditions. (Sensky 1990). These unhelpful, or dysfunctional cognitions include the beliefs that the presence of symptoms make activity impossible (Riley, Aherne, Follick 1988)...etc"

Psychiatric management of PVFS. M Sharpe. British Medical Bulletin (1991) Vol 47 pp 989-1005 @p993

"Third, the patients' beliefs themselves may influence the outcomes. In particular, the relevant cognitions are not that the illness is physical, but that it is serious and beyond control. These last possibilities are of considerable interest because, if true, it implies that changes in belief may led (sic) to improvements in outcome.

In order to explore the role of illness beliefs in illness perpetuation we must widen the scope of our discussion to include a wider range of illness-related cognitions. It is normal for people to have thoughts about all aspects of their illness, and not just about the cause or diagnosis. (Sensky 1990) We suggest that such illness related cognitions could provide a link between the crude concept of illness attribution and clinical outcome, and that the mechanism involves their effect on the patients' emotions an choice of coping strategies."

Chronic fatigue and its syndromes Simon Wessely, Matthew Hotopf, and Michael Sharpe. OUP 1998 12.2 The importance of illness beliefs @p284

Cognitive behavioural therapy (CBT) rests on the assumption that beliefs people hold about themselves and their future are powerful predictors of mood and behaviour. The approach was first used in the treatment of depression, but now has demonstrated efficacy in treating a wide variety of neurotic disorders including anxiety and post-traumatic stress disorder, as well as medically unexplained physical symptoms and in a range of physical illnesses. (Sensky 1990)……

ibid 17.10 Cognitive behaviour therapy @p384.

I trust this will have piqued your interest sufficiently to make you wish to read Sensky's offering, it is well worth the effort, which, in any case, will not be found too demanding. Here it is
www.bmj.com/content/300/6725/622

Some might think that if the PACE trial were to fail, a certain shadow might be cast over the work of those who hold similar views.

The reader, especially one who also reads Private Eye, will be pleased to see reference to the paper by Wessely and Lewis.

 

Having a serious illness would be associated with both belief to have a serious illness and worse outcomes (when compared to milder illness). The same is true for the illness being uncontrollable with interventions (I think this is what is meant here). At this level of analysis, there is nothing to suggest something other than the expected is occurring.

I suspect they would interpret both match and mismatch between beliefs about outcome and actual outcome to be evidence of psychogenic illness causation.

 

Sorry - I misunderstood. I mistook that as a slur on statisticians!

You said: "Statisticians seem to be quite good at missing problems with PACE methodology because they are as much psychological as mathematical..."

I've italicised the subject of the sentence: "Statisticians are good at missing problems ... because they [the statisticians] are psychological" - hence my ??????

But I understand now. Stuart Pocock is not just any old statistician. He has written a widely regarded book on Clinical Trials and also dealt with the psychological issues of trials - why we blind, why we use placebos, why we avoid subjective outcomes, why we should avoid protocol deviations - all things wrong with PACE that are not just mathematical.

The wider "psychosocial" problems with PACE are not wanting to disrupt the status quo, deferrence to authority and the old-boy network, giving the experts the benefit of the doubt, etc, etc.

As a former tutee of his, I've wanted to contact him about this, but I have no standing (why should he listen to me?), and I did my MSc nearly 20 years ago (he probably won't even remember me). I thought "prof to prof" contact would be more effective, but I guess that's only viable if you know each other, which you don't, so that's that then. (He's done a lot of work reviewing rheumatology trials, so I thought there was a chance there.)

 

plus the £200k QMUL spent fighting not to release data.

re the MRC and the issue of putting researchers off moving into the field.......
maybe something they (MRC) could do for starters is to update their website:

https://mrc.ukri.org/funding/scienc...medicine/our-science-and-contacts-psmb/cfsme/

The most up-to-date entry is a file on MRC expenditure on CFS/ME for 2004/2017

The list of members of the CMRC still has Crawley, White, Peter Spencer(AfME),Prof Pinching.
The most recent CMRC meeting notes are from 2010.

under the highlight notice it says:

"Proposals submitted under this highlight notice should, therefore, involve partnerships between CFS/ME researchers and established, leading investigators working in relevant areas, but who are new to the CFS/ME field."

so if I read this correctly; the proposals submitted have to have some kind of association with exisiting 'CFS/ME researchers' yet apart from the out of date list (which incidentally says to 'click on member for declaration of interest' but none are clickable) there is no mention of who 'their' recognised 'CFS/ME researchers are.

So again, as I understand it, you cannot be a CFS/ME researcher unless you have already done research into the illness, and you cannot become a CFS/ME researcher unless you ally yourself to an existing researcher.

To my mind if anything, the MRC are doing a pretty good job of putting researchers off themselves, or at the very least not doing much to encourage new researchers into the field.

This is before we even get to how they decide which proposals are worthy of funding.

 

Having taught in both Further Education and Grammar Schools, I can tell you that I can remember many of my former students with fairly minor prompting - especially the opinionated ones, or those who worked particularly hard to achieve their results.

Just contact him. You might be surprised.

 

I was cautious, mainly because of what he said about "patient activists" in this lecture he gave a few years ago (2014):
Bradford Hill Lecture: Stuart Pocock “Controversies, calamities and celebrations in clinical trials research”



[ETA: I've watched it again - I must have been in a very defensive mood when I first saw it - what he says is quite sensible! @35mins]