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

Esther12 · Nov 2, 2018

What a surprise that it looks like this is all about 'activists insist it's physical' and not at all about the problems with the science.

The gross simplification of the 'psychological vs physical' thing is there go to card for smearing people concerned about their work, but it's such a minor part of the problems with the way they've behaved. It would be great if we could just leave that topic behind. Journalist are never going to bother to investigate the details of, eg how insurance companies can class CFS as a MH condition to reduce payouts, or how they're can be reduced concern about informed consent for those viewed as suffering from MH conditions. Whenever they touch the topic it's going to be about how 'there's no clear distinction between neurological and psychological conditions, so if patients are upset about this they must be ignorant and prejudiced, and anyway none of the researchers I spoke to said they think it is "all in the mind".'

The UK media's promotion of the idea that this is the key issue for patients just shows how much bigotry we face.

Lidia Thompson · Nov 2, 2018

Lucibee said: ↑

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.

You can email Science Weekly at scienceweekly@theguardian.com
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I have managed to listen to this poscast to the end. There's no mention of patients reporting deterioration with GET. Michael Sharpe brazenly says that he disagrees with the reanalysis of the PACE Trial paper (even though it was done on the basis of the original protocol.) He says patients are anti-science and compares them with anti-vax-ers etc. The Guardian is so very, very biased.

I feel quite sick.

Suffolkres · Nov 2, 2018

https://kclpure.kcl.ac.uk/portal/kimberley.goldsmith.html
Dr Kimberley Goldsmith
Senior Lecturer
Dr Kimberley Goldsmith
Research interests
My main research focus is mediation of the effects of psychotherapeutic treatments in clinical trials. This is part of a wider interest in studying causal inference. I am evaluating potential mediators in the PACE trial of treatments for chronic fatigue syndrome in collaboration with Trudie Chalder and the other PACE investigators. I am also using PACE, and other trials of cognitive behavioural therapy, to study and develop methods such as instrumental variable estimation of mediated effects. Other interests include modelling longitudinal data and managing missing data in trials.

Start date at Kings: 1/08/2010

Contact details:
Postal address:
2nd
Inst. of Psychiatry
Denmark Hill
United Kingdom
Telephone: +44 (0)20 7848 0938

E-mail: kimberley.goldsmith@kcl.ac.uk

Department

Biostatistics & Health Informatics

Latest Research Outputs

Cognitive and Behavioral Differences Between Subtypes in Refractory Irritable Bowel Syndrome
Windgassen, S., Moss-Morris, R., Everitt, H., Sibelli, A., Goldsmith, K. & Chalder, T. 21 Sep 2018 In : Behavior Therapy.
Article

Measurement error, time lag, unmeasured confounding: Considerations for longitudinal estimation of the effect of the mediation ‘b path’ in randomised clinical trials
Goldsmith, KA., Chalder, T., White, PD., Sharpe, M. & Pickles, A. 1 Jun 2018 In : Statistical Methods in Medical Research. 27, 6, p. 1615-1633
Article

Tutorial: The Practical Application of Longitudinal Structural Equation Mediation Models in Clinical Trials
Goldsmith, K. A., MacKinnon, D. P., Chalder, T., White, P. D., Sharpe, M. & Pickles, A. Jun 2018 In : PSYCHOLOGICAL METHODS. 23, 2, p. 191-207
Article

Psychometric properties and factor structure of a shortened version of the Cognitive Behavioural Responses Questionnaire (CBRQ)
Ryan, E. G., Vitoratou, V., Goldsmith, K. A. & Chalder, T. Feb 2018 In : Psychosomatic Medicine. 80, 2, p. 230-237
Article

Trish · Nov 2, 2018

Moderator note.
Discussions on two threads about this podcast have been merged and duplicate, copied or unnecessary posts deleted.

Sly Saint · Nov 2, 2018

part 5

IS: Before the break I spoke to Michael Sharpe and Kim Goldsmith about their experience of doing research into Chronic fatigue syndrome. Michael spoke about the abuse he received Kim mentioned her concerns about continuing to research the illness. They wanted to speak to us because they worried about how attacks on science could harm research.

I quoted a Reuters report at the top of the podcast. They reported that a highly respected science journal is considering withdrawing a much cited review of interventions for Chronic Fatigue Syndrome amid quote ‘fierce criticism and pressure from activists and patients’.
We wrote to the journal in question, the Cochrane Review. We asked them what the nature of the complaint was. Was it from a member of the public? Or a scientist? And finally whether they were withdrawing the paper. They wrote back to say:

“The Cochrane review of Exercise therapy for Chronic fatigue Syndrome was last updated in 2014 and is subject to an ongoing process of review and revision following the submission of a formal complaint to the Editor in Chief. Cochrane carefully considers all feedback and complaints and revises when appropriate to do so. The review author team have advised us that a resubmission of this review is imminent. A decision on the status of this review will be made once this resubmission has been through editorial process which we anticipate will be towards the end of November of 2018.”
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inox · Nov 2, 2018

But since it's so one-sided, could it be possible to advocate for a podcast with arguments from scientist on "the other side"? David Marks would love some airtime I would guess, or Geraghty - or others?

https://twitter.com/user/status/1058366757419782145

Sly Saint · Nov 2, 2018

part 6

IS:
When we enquired about the nature of the complaint and what it pertained to they didn’t comment. We also contacted the lead author.
She also preferred not to comment at this stage.
So it is unclear whether Cochrane will withdraw the review or not.
It’s also unclear precisely what the complaint was about.

MS: The Cochrane Collaboration as your listeners might know is regarded as a gold standard of evidence in the medical field and what Cochrane do is very rigorous systematic reviews and metanalyses of existing clinical trials to provide the best answer that we can to questions of clinical treatments.

So what the Cochrane does in terms of evidence is very important. What I am told is that my colleagues who did a systematic review of graded exercise and Chronic fatigue syndrome, they were told that their reviews were going to be retracted specifically because of complaints that they’d had. So if that were to be the case,
that would clearly be very alarming because that would be an example of the evidence that is available to doctors and the public being changed not by a change in science but by campaigns.

IS: It was a concern echoed by Kim too.

KG: If the review is being withdrawn because of concerns that people have about the treatments that may, may or may not have a strong scientific basis, so be so, you know , bad as warrant withdrawal of the review, and then this is, becomes a common practice in other areas, then I feel that this is , you know influencing science in an unscientific way potentially. That’s really, I think that’s really my concern.

IS: If it is campaigners that have lead Cochrane to consider pulling this paper I wondered why do they hold so much sway?

KG: Um, yeah I guess in some ways I’m not sure. I s’pose we have to ask the, for example people at the Cochrane Collaboration, but I do think the disease is clearly, its really unpleasant, and I do really feel, it must be a really difficult thing to have happen to you, and also I think because we don’t know much about what causes the disease, I think maybe that’s why because it’s not clear what causes the disease and these treatments ehm, are more trying to help people cope with symptoms rather than getting at the cause, perhaps that’s why these criticisms do have sway.
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chrisb · Nov 2, 2018

I am hoping that Part 7 will say that we fearlessly approached the Reuters journalist Kelland for a comment but she indicated that she could not reveal her sources.

Robert 1973 · Nov 2, 2018

MS: “Well CFS stands for Chronic Fatigue SYNDROME, and a syndrome defines a collection of symptoms, It’s not the same as a disease, where we know the cause.”

KG: “...I do think the disease is clearly... its really unpleasant, and I do really feel, it must be a really difficult thing to have happen to you, and also I think because we don’t know much about what causes the disease, I think maybe that’s why because it’s not clear what causes the disease...”

So it is a syndrome which is not the same a disease, and also a really unpleasant disease. I’m pleased they managed to clarify that.

KG: “...and these treatments ehm, are more trying to help people cope with symptoms rather than getting at the cause, perhaps that’s why these criticisms do have sway.”

This above statement is deeply misleading. PACE-type CBT and GET are based on the assumption that ME/CFS is perpetuated by unhelpful cognitions and deconitioning which can be reversed by patients’ own efforts. This is VERY different from CBT which is given to patients with other illnesses which is designed to help them cope with their symptoms. PACE-type CBT and GET encourage patients to ignore their symptoms.

However, the fact that KG is trying to present CBT and GET in this way suggests that she knows they have lost the argument that CBT and GET can “reverse” ME/CFS.

rvallee · Nov 2, 2018

Sly Saint said: ↑

part 6
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It's kind of perverse hearing Sharpe talk about Cochrane being the "gold standard" after they had just spent a whole week disparaging it, saying it had lost its way and was now basically a trash journal. And with the ex-head of the RCGP joining in, too.

This is so exactly like Trump: everything that's bad for them is fake news, nothing they say is ever held against them even when they directly contradict themselves within the same sentence, dozens of academics raising serious flaws in the research is invalid but Sharpe simply disagreeing that the flaws even exist is a serious, professional response.

This is PR, not journalism. The SMC's role in this will need serious evaluation. They are abusing their status as a charity and Wessely is clearly abusing his authority by wielding it as a tool to protect his reputation and career.

Sly Saint · Nov 2, 2018

part 7 (last one)

IS: What do you think of the consequences of this where you have editors
looking at withdrawing a review of research, do you have scientists stepping back from doing the research itself?

KG: Well I think, I think its er, it’s really dangerous, I mean, the thing about this particular situation is, these are, as far as I know, the only two evidence based treatments that exist. So my concern is that if these treatments were not available anymore that there would be no treatments for people with Chronic Fatigue Syndrome, and I think that given that there is an evidence base for moderate effectiveness I think that would be potentially quite serious.

IS: But this is not just happening in the field of Chronic Fatigue Syndrome.

MS: Um, but as a phenomena, this is happening across a number of fields of science, and very important areas like vaccination.
I think it is a challenge for how we communicate science, because if our usual systems of peer review and dissemination are to be altered by essentially pressure groups, that will mean that the information available to the public will not reflect the science, it will reflect the interest of pressure groups. And if one’s passion is about science I think that is a cause for concern.

IS: A lot of this work is publicly funded and presumably that means that the public have some input at some point along the way. Where do they come in? Where does the public voice, which presumably includes campaigners, where do they have a like a legitimate entry point for discussing this, and steering this work? And where do they maybe not?

MS: I think that most people that do health research are used to and indeed welcome and, are required to in many cases, involve members of the public and patients in their research and that’s in formulating the questions, it’s in designing the studies and making sure they’re suitable for the participants, and its interpreting the result, their results, and it’s indeed in helping disseminate the results. So that’s really er good practice now and I think most people would do that.

Clearly it’s also quite reasonable for the public and campaigners to criticise research when it’s published. And the standard way we have of doing that is to write a letter to the journal that is sounding a little antiquated now but that is our system, or they can write blogs, and so on.
I think where the line is crossed for me is when they campaign to have research removed from the public record because it offends them in some way. And I think, that for me is the line that’s too far.

IS: What are scientists to do, do you think, in situations like this?

MS: I think it’s difficult. I hope that scientists would on the one hand listen carefully to criticisms made because sometimes they might be good ones, um but at the same time stand up for the conclusions of the data, and not allow themselves to be silenced or swayed just because someone’s shouting. I think it’s a challenge across science and it’s one we’re gonna have to work out how we deal with it.

IS: And what about patients in this? Because, for a patient going online and looking at CFS, ME, things come up on the PACE trial things come up on the Cochrane review, I don’t know how a patient is supposed to understand what is right and what is wrong.

MS: Well I think you’ve put your finger on the nub of this whole issue.
Is, if the information becomes so confused that patients and indeed physicians don’t know what the right treatment is, then patients can’t benefit from treatment that has been found in research. I think it is very important just to reiterate the point that my colleagues that run clinics for people with Chronic Fatigue Syndrome tell me that most people they see are quite happy to undertake these treatments and that the people campaigning do not represent all patients. They represent a smaller group of people, and it’s really important that the campaigners, to my view, don’t stop people who would like to have these treatments, from being able to have them.

IS: So how much say should the public have in science? I think we can all agree that scientists can do more to engage with the public. And, as the public we need to take more interest and discuss the research we want.
The question is how?
Chronic Fatigue Syndrome is a debilitating condition that has an enormous effect on peoples lives. Clearly a better understanding of the illness is needed to better help those affected, and the only way that will happen is with more research.
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Esther12 · Nov 2, 2018

So they've got a podcast on the PACE trial and 'What role should the public play in science?', but this discussion involves just two PACE trial authors attacking their critics?

If only there was some organisation that would be able to provide access to a balanced range of independent scientific expertise that journalists could just blindly trust. That would really improve the quality of coverage.

Kalliope · Nov 2, 2018

https://twitter.com/user/status/1058374993225175041

https://twitter.com/user/status/1058375673314766848

https://twitter.com/user/status/1058376013531570176

https://twitter.com/user/status/1058378100948549632

https://twitter.com/user/status/1058378324647575552

SallyC · Nov 2, 2018

Sly Saint said: ↑

part 7 (last one)
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Thank you for this massive effort, it's really helpful. I was so angry when I listened to it I didn't absorb it all but your transcripts are brilliant.

Sly Saint · Nov 2, 2018

well and truly pooped now

Russell Fleming · Nov 2, 2018

Hi,

I haven't shared this podcast on the ME Association's social media because I felt we should at least try and listen to it first. Your comments are very helpful - as is the transcript - so thank you.

I have listened to some of the podcast, and wondered if anyone could possibly tell me why Sharpe mentions that people who had depression in the past are likely to develop ME/CFS and that another cause might be 'genetic load' (I think he said).

I have been feeling especially crappy these last couple of days, so any help would be gratefully received and no doubt will prompt my memory.

I have given the podcast to our trustees for comment, but I really need to take this weekend off so I doubt we'll feature it - if we do at all - before next week.

People are still reeling over the NICE committee composition, which we're still working on, and I expect this podcast will be the last thing they need at the weekend.

I am pleased to see Dr Geraghty and Jen Brea taking this to task however on Twitter.

Thanks again

Russell

MEMarge · Nov 2, 2018

Sly Saint said: ↑

well and truly pooped now
Click to expand...

Thank you so much for the transcript, hope you recover from the exertion soon.

andypants · Nov 2, 2018

@Sly Saint what a tremendous effort! Thank you

Lucibee · Nov 2, 2018

Russell Fleming said: ↑

I have listened to some of the podcast, and wondered if anyone could possibly tell me why Sharpe mentions that people who had depression in the past are likely to develop ME/CFS and that another cause might be 'genetic load' (I think he said).
Click to expand...

Because he doesn't know what he is talking about?

Cinders66 · Nov 2, 2018

Russell Fleming said: ↑

Hi,

I haven't shared this podcast on the ME Association's social media because I felt we should at least try and listen to it first. Your comments are very helpful - as is the transcript - so thank you.

I have listened to some of the podcast, and wondered if anyone could possibly tell me why Sharpe mentions that people who had depression in the past are likely to develop ME/CFS and that another cause might be 'genetic load' (I think he said).

I have been feeling especially crappy these last couple of days, so any help would be gratefully received and no doubt will prompt my memory.

I have given the podcast to our trustees for comment, but I really need to take this weekend off so I doubt we'll feature it - if we do at all - before next week.

People are still reeling over the NICE committee composition, which we're still working on, and I expect this podcast will be the last thing they need at the weekend.

I am pleased to see Dr Geraghty and Jen Brea taking this to task however on Twitter.

Thanks again

Russell
Click to expand...

I hope you put it up sometime Russell. Mea publishing policy has always supposed to be no censor, everything put up for public knowledge. If I didn’t come here I might not have heard of it and I like to know what’s going on. I’m sure your members do too, even if bad and NICE hasn’t been much covered by mea for reasons you gave. If there’s a bit of a sh*** storm then that’s reality and the only way we confront that reality effectively as a community is to be in the know.

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