Bristol - New Network - Prof Munafo

Here is a copy of my first draft. Feel free to be as critical as you wish: I really do not get upset! I take it as a compliment that you are sufficiently interested to sort me out.

It is a personal rant. It might be better to create a more neutral one in parallel: let me rant away, and let you create a constructive dialogue.

(edit for background info.)

There is a proposal to create a new network of "good, rigorous" researchers - http://www.bristol.ac.uk/news/2018/september/reproducibility-network-.html

At the same time Bristol claims to be a wonderful centre, but includes MAGENTA and FITNET. http://www.bristol.ac.uk/population-health-sciences/centres/brtc/ and http://www.bristol.ac.uk/population-health-sciences/centres/brtc/current-trials/

 

Looks good @Graham. Just wondering if "I earned my maths degree back in the sixties at Sussex, but was fortunate enough to be able to study Experimental Psychology under Prof. Stuart Sutherland" should possibly be "I earned my maths degree back in the sixties at Sussex, *and* was fortunate enough to be able to study Experimental Psychology under Prof. Stuart Sutherland." ?

Might it also be worth commenting on the Hope4ME NI conference, https://www.s4me.info/threads/hope-...-monday-17th-september-2018.4333/#post-105014 ? Though I appreciate there are so many things that could be referenced, but it's very current.

 

I couldn't tell what you wanted in your letter (sorry!). I had read almost 1,000 words and still couldn't tell where it was going, and was only skimming it to find where you were going to get to the point (sorry again!). It's important that he doesn't just skim.

What do you want from Prof. Murano? What is the main point you're trying to make?

Although you mention you were a maths teacher and have ME and have criticised PACE, I don't know if it will be clear to him why he should listen to you. I think he should listen because you're au fait with a scandal that has attracted the horrified attention of his peers as well as 10,000+ patients and over two dozen patients' charities and a shedload of MPs in a debate at Westminster Hall, and you are drawing this godawful catastrophe to his attention. He needs to know about it so that he doesn't himself make a terrible mistake. I think that argument needs to go in there.

For all my carping, it's an excellent idea to write to him!

 

Just to explain to those who aren't used to me, I tend to rant away, then folk tell me that I'm off topic, and help me focus. I really am useless otherwise at writing! I used to think that becoming a maths teacher would mean an end to all that struggling to write coherently. Instead I ended up having to write more than I ever did at school.

So thanks for your suggestions. Keep 'em coming, and I'll work on it.

I don't really want or expect anything from Prof Murano in one sense: he has already failed to stand up for good research, or rather to condemn bad research, and if he needs us to point out the faults in these trials, he has no idea what good research is all about. But I believe that we need to keep prodding the research community to stand up and be counted, and to let them feel the spotlight upon them.

 

But what do you actually want him to do? If you really don't want him to do anything, I don't understand why you're writing to him.

 

He is setting himself up as someone who cares about scientific integrity, so really this is a challenge to him to show his worth. Will he step up to the mark, investigate the truth of the matter for himself and speak out, or will he just ignore me?

I would love him to look into it, argue with us, and decide for himself what the truth is, then stand up and speak. I strongly suspect he will not: I even suspect that he is already uneasy about SMILE etc., and this might be his way of avoiding the conflict. Rather than address the problem, move aside to a new situation. Perhaps I need to say that.

 

But it doesn't sound like one! What exactly do you want him to do to show his worth? Why not tell him?

Unfortunately, I think you're making yourself easy to ignore by not being specific. You don't ask anything of him at all in this current version - you just complain about standards in general. You don't even ask him any questions about how he's going to avoid the problems that you're complaining about.

Why not ask him directly to do these things you want?

 

Sasha, where would I be without you? Performing a binomial random walk down the pinboard of dreams?

Rewrite 1 coming up tomorrow.

I'd be much happier if I could sit down and converse with him.

 

@Graham, an important endeavour and a good critique of PACE, but it needs to be made clear from the beginning why this is relevant to the Bristol Randomised Trials Collaborative. That PACE is being used as justification and a model for ME/CFS research undertaken by The University of Bristol.

I seem to think that in the BRTC publicity material they promote Magenta as an example of the good work done in relation to randomised clinical trials and justification for Bristol promoting their expertise in this area. Someone correct me if I am misremembering this (I will try to find the link.). Obviously Magenta has even more flaws than PACE and to be associated with this and FITNET and the SMILE trial the BRTC are at best opening themselves to ridicule and at worst promoting bad science that is casing real harm to patients.

 

Yes, the BRTC include both Magenta and FIT-NET in their list of the current work of the collaborative. See the link cited above http://www.bristol.ac.uk/population-health-sciences/centres/brtc/current-trials/

The appallingly low standard of both these trials is in total contradiction of the claim that "The BRTC designs and conducts high quality pragmatic randomised controlled trials (RCTs)". Indeed Magenta can not even be said to be a randomised controlled trial as on top of its many faults it does not even have a control group.

 

It can be difficult to get to the point with PACE as it often feels like we need to ramble away trying to pre-empt and unpick the prejudices around PACE, provide some detailed points to show we're able to back up our concerns, etc.

I get the impression most academics would prefer to just get three sentences on 1) who I am 2) here's what I want 3) here's why it would be good if you did it. It's hard to do that well.

 

I suppose we would like Prof Murano to come out against the whole methodological nightmare of PACE and the BPS copycat research failures, perhaps even co-signing David Tuller's letter to the Lancett.

However he has no necessary obligation to even consider the research that is not directly linked to the BRTC. What we can ask is that he comment on the methodological flaws of Magenta and FITNET that are listed on the BRTC website as part of the work of the Collaborative which he heads up, and that if he is unable to defend them from our many criticisms that he withdraw his implicit support from these studies by removing mention or links relating to them from the website.

 

Edit: It seems that the BRTC is a separate project - although it's involvement with SMILE still raises serious questions about Bristol's 'expertise' on these matters.

I just searched for BRTC related publications with 'fatigue' as a keyword: http://www.bristol.ac.uk/population-health-sciences/centres/brtc/publications/

SMILE trial came up: Crawley E et al. 2017 Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome Archives of Disease in Childhood 10.1136/archdischild-2017-313375

I think it would be worth adding a couple of sentences on that BS... I'm encouraging a ramble again, aren't I?

 

Thank you for taking action, @Graham . Have you seen the linked manifesto? https://www.nature.com/articles/s41562-016-0021

Only was able to have a first glance at Munafo's manifesto -- it seems to make some reasonable points. So perhaps it could be worth the task to show in which points a trial that the BRTC people apparently refer to (SMILE - see previous post by @Esther12 ) contradicts a manifesto by a Univerity of Bristol Professor of Biological Psychology (if it does)? And only after having pointed on the contradictions of the manifesto and SMILE, refer to the other trials (MAGENTA, FITNET) at Bristol, and then eventually, refer to this other big trial most of bad ME trials refer to.... ?

ETA: Just realized that Dorothy Bishop is one of the manifesto's co-authors. Does not sound that promising then - see: http://www.virology.ws/2018/06/25/trial-by-error-my-exchange-with-professor-bishop/

(Apologies for not being very clear, I am still having a forum break.)

Edited: The manifesto is authored by Munafo and others. Munafo launched a "new network that aims to improve the rigour and reliability of UK-led scientific research" at the University of Bristol. I followed the link provided by @Graham in the OP and confounded it with the BRTC ( https://www.s4me.info/threads/bristol-randomised-trials-collaboration.5731/ ).

Nevertheless I think it could be worth to refer to the manifesto, as Munafo is a Professor at Bristol (and that seems to be the reason why @Graham plans to address him at all)?

 

Nice idea Graham but I agree you need to tell him the punch line at the start.

Something like:

I am pleased to see you are setting up an organisation for 'co-ordinating shared training and best practice across research-intensive universities' but are you aware that your own BRTC at Bristol is supporting some of the most flawed trials in history - and in the field of psychology?

 

The question is what effect will it have?
Will this be just another example of concerns raised by PWME being given no more than lip service as it is they who have raised them?

Can this be made wider ?