The Guardian's Science Weekly podcast - 2 November 2018 - What role should the public play in science?

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What role should the public play in science? - Science Weekly podcast
The Guardian's Science Weekly podcast , 2 Nov 2018
https://www.theguardian.com/science...public-play-in-science-science-weekly-podcast

Chronic fatigue syndrome is a severe, long-term illness with a wide range of symptoms, the most common of which is extreme mental and physical fatigue. Scientists haven’t been able to find the cause and current interventions focus on helping sufferers cope with the syndrome. These interventions are cognitive behavioural therapy and exercise therapy.

However, critics argue that this focus suggests the illness is ‘all in the mind’ and does not have a physical component. As a result, researchers looking at efficacy of these therapies claim they are verbally abused. But now, it may have gone a step further. Reuters recently reported that ‘a respected science journal is to withdraw a much-cited review of evidence on an illness known as chronic fatigue syndrome amid fierce criticism and pressure from activists and patients.’

Ian Sample speaks to Prof Michael Sharpe from the University of Oxford and to Dr Kim Goldsmith from King’s College London about what role the public should play and whether science should have boundaries to protect its integrity.

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part 1
In May activists rallied in New York to call on governments worldwide to take action for people living with ME or myalgic encephalomyelitis.
Their placards bore messages like 'You cant ignore ME now' and 'ME/CFS hidden suffering'. CFS stands for chronic fatigue syndrome and you often see ME and CFS mentioned together in the media.

MS: we don’t know whether they have a single cause or multiple causes so I think we should not necessarily assume that these are the same conditions although they do seem to have overlap.

The fact that we don’t know what causes the disease or diseases, has long been a source of contention.
Despite the discovery of biological abnormalities in patients, what is happening in people affected is far from clear.

KG: the disease is clearly really unpleasant and I do really feel it must be a really difficult thing to have happen to you..

Without an identified cause interventions have focussed on strategies like cbt or get.
They aim to help sufferers cope with their symptoms.
But some see the focus on the mind as a dismissal of it being a physical disease. They say it suggests that the illness is ‘all in the mind’. It’s an argument that researchers we spoke to reject.

KG: It doesn’t mean that the disease might not have a physical cause it may very well have, have, such a thing.

For researchers in the field it can be a challenging environment to work in. Some face regular abuse, and campaigns that target their funders and institutions.

MS: any one who works in this field is familiar with receiving a fair bit of criticism and sometimes some very frank hostility.

IS: were you attacked personally?

MS: Any of your listeners wants to go on Google or twitter and have a look they will see some not very pleasant comments to me.

But now the fraud debate may have reached another level. The Reuters News agency reports that a major journal is about to withdraw a much cited review of interventions for CFS amid what it calls fierce criticism and pressure from activists and patients.

WO If its being withdrawn without there being any serious scientific fraud or major problems with how the review is done, and its being withdrawn anyway, I do find that a worrying precedent.

I’m Ian Sample and on science weekly we are looking at what role the public shoud have in research.
We are not looking at the cause of CFS or its potential treatment but asking whether boundaries should exist to protect the integrity of science.
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part 2
MS: So my names Michael Sharpe I’m Professor of Psychological medicine which is psychiatry and psychology applied to medical illnesses and I work at the University of Oxford.

IS: what is CFS?

MS: CFS is pretty much what it says on the tin. It’s a illness, eh, which is characterised by the symptom of severe fatigue, that’s usually made worse by activity, and it’s defined as having lasted at least 6 months and being disabling, that’s preventing the people, that’s preventing the sufferers doing the things that they would normally do.

IS: and how does that relate to ME we often hear these two terms together.

MS: the term ME stands for myalgic encephalomyelitis. This term was coined in the 1950’s to describe an epidemic of symptoms in the staff of the Royal Free Hospital which occurred during a polio epidemic. And in modern usage is used to describe complex symptoms without a clear medical cause which is often but not always characterised by severe fatigue. SO they are often conflated as CFS/ME or ME/CFS. In fact they may not be identical. And the problem is where you have illnesses that are essentially defined on symptoms, we don’t know whether they have a single causeor multiple causes. So I think we should not necessarily assume that these are the same conditions although they do seem to have overlap.

IS; lets talk about CFS. Do we know what the cause of it is?

MS: Well CFS stands for Chronic Fatigue SYNDROME, and a syndrome defines a collection of symptoms, its not the same as a disease where we knowthe cause, so in simple terms we don’t’have a single cause. We do know that it can start following infections. We do know that people who have suffered depression in the past are more likely to get it, we do know there may be a small genetic loading. But n terms of a specific clearly identifiable cause you are right we don’t know.

IS; and presumably not knowing the cause makes it that much harder to treat right?

MS: Well that is true to some extent. But a lot of treatments in medicine probably an embarassingly large number are being designed and tested and are used without knowing the cause.
It would help to know the cause but that doesn’t mean we shouldn’t try treatments.
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part 3
IS: Michael and a fellow scientist Kim Goldsmith were part of a team that looked at the efficacy
Of treatments for these patients. Kim is a Biostatistician at Kings College London.
She worked with Michael on the PACE trial. A large scale five year study, that compared a number of interventions aimed at helping patients.

KG: So, one of those was CBT, that addresses sort of how people might think about their symptoms
And behave towards their symptoms. Another was GET, which a physiotherapist delivers and with the person with the illness to gradually increase their exercise. The third one was called Adaptive Pacing therapy, and the idea of that is that you do things when you feel you have energy and you rest when you don’t. And those three treatments were compared against a control er, a treatment which was given to everyone on the trial.

IS: How effective do those treatments seem to be?

KG: We see those as moderately effective treatments. Erm so, as we also indicated in the paper, it probably means we need, we do need other treatments because these ones are moderately effective.

[she seems to have been cut off at this point]

IS: The paper received some criticism; one study published in the journal BMC Psychology reanalysed the raw data from the PACE trial and found that CBT and GET had quote ‘no long term benefits at all’.
I put this to Michael.

MS: Well we’ve been very carefully through that paper and of course it makes some points about the limitations of these kind of trials which are actually described in the paper. But we don’t agree with their reanalysis and we don’t think it actually changes the results of the trial.


IS: But the criticisms didn’t stop there.

MS: Any one who works in this field and that’s not just the authors of the PACE trial, anyone who does this kind of research into CFS is familiar in receiving a fair bit of criticism and sometimes some very frank hostility.

IS: were you attacked personally?

MS: Any of your listeners wants to go on Google or twitter and have a look they will see some not very pleasant comments to me.

IS; Have you in some sense become a lightning rod for this kind of reaction?

MS: er no I don’t think that’s true, in fact I know it isnt true, because I am in touch with colleagues in a number of other countries and I’m sorry to say they pretty much all receive the same kind of treatment.
Erm so colleagues here, in Norway, in the Netherlands, in Denmark, so some extent in the US, so this is a general phenomenon.

IS; Why are these campaigners so opposed to things like GET and CBT.

MS: well I can only answer that in terms of what they say when they are criticising. I think there are very strongly and sincerely held views about the nature of the illness. That it is in their mind a neurological illness that has no psychological or psychiatric aspect to it., And it could not be changed by such a simple thing as changing activity. Therefore , evidence which is contrary to that very strongly held view must be false and actually they feel its challenging the narrative that they favour, not only must it be false but it must be removed. So I think this is a clash of very strongly held views about the illness between what the science is telling us and what people passionately believe about the illness they often have themselves.
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Merged thread

Ian Sample (The Guardian's Science editor) presents The Guardian's Science Weekly podcast looking at the public influence on science with a focus on ME/CFS. The show features Michael Sharpe.

Chronic fatigue syndrome is a severe, long-term illness with a wide range of symptoms, the most common of which is extreme mental and physical fatigue. Scientists haven’t been able to find the cause and current interventions focus on helping sufferers cope with the syndrome. These interventions are cognitive behavioural therapy and exercise therapy.

However, critics argue that this focus suggests the illness is ‘all in the mind’ and does not have a physical component. As a result, researchers looking at efficacy of these therapies claim they are verbally abused. But now, it may have gone a step further. Reuters recently reported that ‘a respected science journal is to withdraw a much-cited review of evidence on an illness known as chronic fatigue syndrome amid fierce criticism and pressure from activists and patients.’

Ian Sample speaks to Prof Michael Sharpe from the University of Oxford and to Dr Kim Goldsmith from King’s College London about what role the public should play and whether science should have boundaries to protect its integrity.
Click to expand...

You can email Science Weekly at scienceweekly@theguardian.com
 
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I made myself listen. Cruel and unusual punishment. What an appalling misrepresentation of the situation. Every falsehood told in such 'reasonable' tones.

Michael Sharpe, if you are reading this, you should be ashamed of yourself. How can you describe hundreds of doctors and scientists and very scientifically savvy patients who have criticised PACE as anti-science? It is you, with your lies about the reasons for the objections and the outcomes of the trial who are anti-science.
 
part 4
IS: Critics argue that the focus on psychological treatments implies that the illness is all in the mind, that it does not have a physiological component.

IS: there seems to be something going on here could be where some patients may see that the suggestion that a sort of psychological intervention could work for them as dismissing it as a mental condition as not a physical disease. Is that the case?

KG: no that’s not the case at all. That’s not how I see it, and I know its not how my colleagues see it either,. These treatments, I think the way that we all see them is that they can help people cope with their symptoms, you know, and we are in a situation where those are the only evidence based treatments and that is kind of where we are at present.
And it doesn’t mean that the disease might not have a physical cause, it may very well have such a thing.

KG: You know I work at the Institute of Psychiatry at Kings and many many of my colleagues also talk about the, you know this distinction between mental disorders or illnesses and physical ones, they don’t really see why theres a distinction there because you know it’s the brain and so on is part of the body as well of course.

IS: But Michael and Kim decided not to work in this field anymore they’ve moved on to research other areas. I asked them why.

KG: I think I would be concerned about taking up more research in this area and this actually I did feel concerned about this in general because again, I don’t know for sure, but I think some scientists have probably stepped away from working in this area because of some of the backlash
That can sometimes happened.

IS (to MS): do you still do research in this area?

MS: um, actually I’m not no. I mean there are a number of reasons for that I’m doing other types of research. But I certainly wasn’t particularly
Encouraged to carry on with it. The reason is, not because of the hostility, but because the complaints that you get have to be responded to by the institutions and then they ask you to respond. And now seven years on, after publishing this trial I’m still spending a half a day a week responding to these kind of complaints and criticisms, and that’s not really sustainable and it gets in the way of research.

IS: as you have said this study is something like seven years old now, erm are you happy to be still coming in to talk about it after all that time?

MS: well its very nice of you to invite me to talk about my research scientists always enjoy that but you are right that it is old news and to be honest one would like to just let go of it but I think it is very important to defend the work of myself and a very large number of colleagues who worked on this trial, and other researchers. And I also think it is important to speak up about the harassment that journals and funders and other institutions get, so that these discussions are in the public domain.
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taking a break now.
 
Sarah said:
What role should the public play in science? - Science Weekly podcast
The Guardian's Science Weekly podcast , 2 Nov 2018
https://www.theguardian.com/science...public-play-in-science-science-weekly-podcast
Click to expand...
After reading too many of their shit papers I am absolutely sure they fear the "informed citizen", and they want "the old good times" where the doctor was God and you the obedient servant. It's a well-known means in dictatorships: to withhold information, e.g. via the internet or meetings (like self-help groups), and to enforce hierarchy. The problem is, it seems to me, that the ME community is getting louder; that destroys their "scapegoat group" for discrimination. In politics, there's a saying: If animosity rises (e.g. bad publicity, lies, propaganda) you're in the right direction.
Let's hope we're in the right direction.
 
Trish said:
I made myself listen. Cruel and unusual punishment. What an appalling misrepresentation of the situation. Every falsehood told in such 'reasonable' tones.
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I made myself listen too. Even by the Guardian's usual standards of ME/CFS coverage, this was an appallingly one-sided piece of reportage (I can't bring myself to call it 'journalism').

"And now on the Guardian's podcast series, Michael Sharpe is allowed to say whatever he likes for half an hour without questioning, interruption or counterpoint..."
 
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