Bristol - New Network - Prof Munafo

That network seems to have grown a bit...

The UK Reproducibility Network (UKRN)

https://www.ukrn.org/

Some familiar people on the Advisory Board:
https://www.ukrn.org/advisory-board/

Recent event:

The King's Open Research Conference: daring to shift research culture towards more reproducibility and transparency

On 11th June 2020, up to 1000 people from across the globe tuned in to watch a one-day event, The King's Open Research Conference, to hear the latest ideas and findings in Open Research. Why?

Includes:

- 'Research ecosystem and incentives' by Prof Marcus Munafo

-' Publication and citation bias' by Prof Dorothy Bishop

- 'Scientific fraud and misconduct' by Dr Stuart Ritchie

- Roundtable discussion with Lara Speicher (Head of Publishing at UCL Press), Victoria Moody (Research strategy lead at JISC), Ben Bleasdale (Senior Policy & Advocacy Advisor at Wellcome Trust), James Parry (Chief Executive of UK Research Integrity Office), Sam Parsons & Sophia Crüwell (co-founders of ReproducibiliTea).

 

Perhaps a letter to Dr Stuart Ritchie?

(edited to add: you know, I'd forgotten completely about this. My two brain cells can only handle so much you know.)

 

Chris Chambers from Cardiff came across as very approachable when he spoke at the UKRN launch Feb 2019. He is on the steering group for this.

https://www.cardiff.ac.uk/people/view/133632-chambers-chris

I had gone mainly to hear Hilda Bastian, who was unable to be there as, sadly her MUm had died.

 

Well, as usual, here is my rubbishy first draft, just to kick off suggestions and redrafts. I'm going to keep stirring until people are sick of me. Mind you, that might not take long.

 

Steering group includes Malcolm MacLeod.

Not really sure why MacLeod considered the location of his wife's office to be more of a noteworthy COI than things like co-authoring with Chlader at around the time this comment was made: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0183286

 

Good letter. I wonder if it's worth adding after your first mention of ME that it has its own, SNOMED,WHO and CDC codes. Should you add the reference for your paper?

 

Thanks @MEMarge and @Esther12 for your informative comments on 2 persons incolved with the UKRN and @Graham for your letter proposal.

Unfortunately ATM not able to properly comment or outline my ideas about what could be a worthwhile involvement with the UKRN.

Not sure whether worthwhile to undertake the work at all (see some people that are part of the network -- MacLeod on the Steering Committee and Dorothy Bishop on the Advisory Committee -- is it even possible to get any not yet retired UK university professors to criticize the work of any of their many many colleagues involved in the cognitive-behavioral appoaches to illness, MUS etc.? ).

Perhaps paradigmatic: Dorothy Bishop in a reply to @dave30th on Virology Blog:

"Given the history of this trial [the SMILE trial], I anticipate that many people will want to debate this further, but it is not feasible for me to devote any more time to this issue, as my priority has to be conducting my own research. This has, therefore, to be my final word on this topic."

https://www.virology.ws/2018/06/25/trial-by-error-my-exchange-with-professor-bishop/

For now, just leaving some snippets here hoping that they give some hints at what I was thinking (as a potential collective enterprise).

(Sorry, note able to provide links now but all should be easy to google or to find on S4ME):

- The SMILE trial does harm in many ways, both LP practitioners and researchers justify doing smiliarly or even worse designed studies to prove alleged benefits of LP -- see Wyller. Also see how Wyller exposed himself as unsound scientis with the music therapy study.

- Treatments based on PACE and similarly badly conducted research are now offered as post-Covid rehab

- How about approaching Munafo again with this update and putting some people of the network in CC (e.g. Hilda Bastian, Chris Chambers) .

- explain in the new letter to Munafo why other people in CC

- check Chamber's book on "Seven Sins..."

- check Stuart Ritchie's recently published book "Science Fictions"

- if the books make valid points, put also Ritchie in CC in the letter to Munafo and ask Chambers and Ritchie to have a look at PACE, SMILE and Wyller's recent ans planned studies.

- Would it make sense to put Dorothy Bishop in CC? Just to inform her on the points she seems to have got wrong in her reply to David Tuller. At least, she acknowledged:

"I agree that it is important to be cautious where outcome measures are based on subjective report, as apparent improvement may not be mirrored by objective measures. This is illustrated by this example in my own field of study:

Bull, L. (2007). Sunflower therapy for children with specific learning difficulties (dyslexia): A randomised, controlled trial. Complement Ther Clin Pract, 13, 15-24.

"In this study the benefits were not seen on direct assessment of the child, but parents were nevertheless enthusiastic about the programme. This emphasises the complexity of evaluating interventions where subjective and objective measures of outcome may diverge."

- Due to the potential harm caused by treatments (or by the attitudes towards certain illnesses especially when framed as 'MUS') based on studies that use subjective outcomes alone as primary endpoints in unblinded trials, wouldn't that be a high-priority topic that the network should engage with?

- Also, there isn't an infinite number of patients as 'resources' for studies. It's unethical to let ill, often severely ill people, participate in nonsense studies. This applies in particular to PWME who already struggle with daily activities and any additonal activity can make their illness worse. Those who are able to participate in studies are very much needed for good research.

- How about patient involvement with the UKRN? (I realize that even if they and S4ME wanted patient involvement, the iedea that S4ME could be involved ATM is utopic.)

 

Just to give a hint at my current shape -- Rafts? Red rafts? (I wondered.)

 

I was only floating a few rebellious ideas.

 

I won't be able to undertake any of the things I proposed in my post above but I read your letter again, @Graham and think it's a good letter that you should send.

Some suggestions:

- Perhaps add something like "I would be happy if you could have a look at some of the most industrious producers of bad research on ME in the UK. The first one is of particular concern: It's a pediatric unit at the University of Bristol ...." (mention the SMILE trial on the quack treatment LP, a trial that is referred to by LP practitioners as alleged scientific evidence for the benefits of their commercial product). (Perhaps recycle some sentences of your letter to Munafo?) -- This could be added after the last paragraph with an introductory sentence like:

"Despite manifold criticism, open letters signed by many clinicians, scientists and patient organizations, bad research on ME continues to get funded and published in prestigious medical journals and thus continues to misinform health care and harms often very ill people [reference QoL of pwME compared to other chronic illness]."

- Add link to the open letter about the SMILE trial and the additions by Brian Hughes, Jonathan Edwards and others.

- Point to editor's expression of concern on the SMILE trial paper but that this doesn't stop these and other researchers to refer approvingly to the trial. A new, similarly badly designed LP study in Norway is underway.

- Perhaps add a sentence like "There are so many flaws in the mentioned trials on treatments for ME that would fill a book, but a common denominator is that they all are unblinded trials that use merely subjective/ self-reported outcomes -- a combination that as far as I'm aware in other areas of research wouldn't count as generating valid evidence for the benefit of any treatment."

- Perhaps replace the closure line (Thank you for hearing me out) with something that expresses how much you would appreciate any response (and if he hasn't any advice, perhaps he is at least interested in signing and circulating the SMILE trial open letter or writing a review of Brian Hughes' book "Psychology in Crisis "https://www.macmillanihe.com/page/detail/Psychology-in-Crisis/?K=9781352003000 -- any kind of raising awareness to that crisis that particularly affects people with ME would be helpful...)

- I think it would be good to cc this letter to Munafo (and explain why).

- You probably would have done that anyway, so just to be sure: include a link to your paper you mentioned.

 

Given the way Crawley seems to be connected with Davey-Smith and others at Bristol, I suspect that Munafo will be keen to not see any problems with her work.

 

I missed that: Who is Davey Smith and in which way is he connected to Crawley? And to Munafo?

Just happened to have another look at Peter White's book (the write-up of the 2004 conference on strategies to disseminate the BPS model) and saw that Davey Smith contributed a chapter that seems to be cautious of the BPS approach (but haven't read it yet -- so don't know whether it is sound or a pseudo-critique).

Regarding the stance of Munafo (and of others from this UK network) on bad research happening at their own institutions or conducted by close colleagues ....hm, maybe it would actually be better to ensure confidentiality when approaching them?

(That would also mean, not putting anyone in cc.)

This way, perhaps it could made undoubtedly clear that the intention is to hear another expert opinion on said questions, to get things changed for the future (now also with regard to long-Covid) , and not to denigrate or scandalize?

Also, that the letter writer realizes that academic staff in the UK are in a difficult situation if they publicly criticize their colleague's work because of the distorted image drawn of 'ME activism' and any criticisism might be understood as 'taking sides'?

(Both points are already implicit in the draft letter, except the long-Covid aspect, just reiterated here trying to make my point clearer.)

(Edited for clarity.)

 

@Graham , I don't want to push you in any way ;-)

Just if you are still thinking of sending the letter (and I think it'a also a good letter without picking up any of my suggestions above), this sentence seems not quite correct:

"This all stems from media and professional reporting of these poor quality studies, emanating from a small number of influential psychiatrists.".

Not only psychiatrists, but also psychologists and pediatrists (Crawley and I think also Wyller are pediatrists and I don't know which psychological/ mental health qualifications they acquired at all other than perhaps being manipulative.)

Perhaps, instead of "influential psychiatrists" just say "professors at renowned UK universities" or something like that?

 

Thanks @MSEsperanza . It's on the backburner at the moment. I guess I was thinking of the original clan way back in the eighties, but your point is entirely valid.

 

I believe all the universities involved are part of the Russell group so that would be one way of designating them.

https://russellgroup.ac.uk/about/our-universities/

 

It feels strange to just go on posting on this thread.

So I'll dedicate an extra post to Graham.

Oh, how I miss him.