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

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.

 

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.

 

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

 

part 5

 

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

 

part 6

 

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.

 

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.

 

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.

 

part 7 (last one)

 

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.

 

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

 

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.

 

well and truly pooped now

 

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

 

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

 

@Sly Saint what a tremendous effort! Thank you

 

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

 

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.