Bristol - New Network - Prof Munafo

Version 2 is great. There is one word I would change, though: in paragraph 2 line 5, 'speakisg' needs to be changed to 'speaking'!

 

Great letter @Graham.

 

Great letter, @Graham, and thank you for your work on this!

 

Thanks for working on this, Graham.

I don't think it's there yet, though. I'm still confused about what you want Prof M to do. You say:

An essential question for me is whether you and other members will be willing to make a public stand when poor and misleading research impinges on the health and treatment of other people: surely that must be an essential element of any push for integrity.


In particular, I would like to know your position on the PACE trial, and on three similarly structured studies from your own university, MAGENTA, FIT-NET, and SMILE.

...
Which brings us back to the key question: what does your proposal mean for the PACE trial, MAGENTA, FIT-NET, and SMILE? Already, in the USA, the PACE trial has been the subject of a lecture in how not to hold a trial. For how long are good researchers in the UK going to remain quiet about trials that lower the status of UK research on the world stage?​

You mention three different possible actions:

(1) make a public stand on 'poor and misleading research' (as yet unspecified);

(2) tell you, Graham, his position on PACE, MAGENTA, FITNET and SMILE;

(3) tell you, Graham, what his proposal means for PACE, MAGENTA, FITNET and SMILE.

Which do you want him to do? I think you need to focus on what you really want from him, and have everything in your letter point to that. I'm assuming it's (1) but if so, things need a bit of a rewrite.

 

@Graham, in another part of the letter you say:

I was fortunate enough to meet a group of like-minded folk with ME, who tried hard to draw the attention of the medical community to this terrible situation... Queen Mary University spent around £250,000 on legal advice and representation, presenting us as destructive and unpleasant individuals who would, on receipt of the data, hack into the NHS systems in order to identify patients involved in the trials, in order to make their lives hell. ​

Did QMUL present the group you mention in this way, or just a bunch of nameless 'people out there'?

 

This is still nearly 1,000 words and it's a lot to read. Also, the reason why he should keep reading needs to be clearer from the outset. He's a professor, and needs to realise quickly that other professors think badly of these trials and that there's a lot in the public domain about it. In his eyes, I don't think that your being a head of maths and having done a bit of experimental psych in your degree will put you on a par with Profs White, Sharpe, Chalder, etc. - rather, the key thing is likely to be that you've successfully published critique in peer-reviewed journals and that other professors have agreed with and taken forward your points - as far as Westminster.

Still needs a considerable rejig, IMO (sorry!). I will PM you.

 

I've just got a big mouth and rant on a bit!

Sorry, Graham!

 

I agree that this is key, and also important to add refs to your own published work, @Graham, so that he'll take you seriously.

 

I think The Stir-upper and The Big-mouth-ranty-person are doing a brilliant job

For what it's worth I completely agree about (not in any order):

i length
ii what action is wanted
iii own published work should be in the references (should also be mentioned in the body of the text)
iii harm to UK research reputation - a growing body of researchers and clinicians overseas see the problems in this field of uk research
iv disservice to patients

Much of the rest is 'story telling' - It's all true, I agree with it and it's well put but I don't think it's needed.

Sorry this is blunt and to the point but if I try to write better than this it would take me all day

 

correction - I don't think all of it's needed, though it's still good to include something of what you mention about how the problems in the research are protected and the failure of people who know what's wrong to stand up and be counted.
Anyway, well done @Graham

 

@Graham, Version 2 is great, everyone might have suggestions for modifications as everyone would write a slightly different letter, but this is eminently sendable.

It is possible you could be more specific about what you are asking him to do, but I don't know if that would necessarily be more productive. Pointing the issues out to him and leaving it up to him what specific action he explores may work best, if he engages. It may be that he completely ignores it, but if he does respond, leaving things a bit open ended could better facilitate an ongoing dialogue.

I would just agree with those suggesting you add references, including your own articles.

 

I wasn't going to do that: I have offered to "help out" if he wants it, but it is more of a personal letter than a formal statement. But as several of you think I should, I guess I should.

You know I welcome your input! I thrive on criticism: it gives me a challenge to raise my game.

No, it didn't pick specifically on us, but the "nameless group" by implication included us. Strictly speaking, only Alem was involved in the tribunal, but their defence was based on their concept of the group behind him.

I don't actually think that we will get any worthwhile support from him: let's face it, if he works at Bristol as a psychologist and is not aware of the controversy over PACE, SMILE and the others, he's not really on the ball. If he is aware, then he has already chosen not to speak out. My intention is just to challenge him on that, and underline the lack of moral fibre of any group purporting to stand for high standards but failing to defend patients. But I would so love to be proved wrong for once.

For that reason I don't intend to spend the sort of time and effort on the letter that we spent on the various articles, letters etc. that we sent off for publication. I'm happy enough to try a third time, and see what you think, but I can't see a letter from me, however beautifully crafted, will crack the influence of the old boy network.

I'll also add a bit that allows others to counter-sign if, if desired. Then you can let me know.

 

Fair enough. Having read his papers now, it seems that he's interested in setting up systems to reward good behaviour in science and he may well not want to get into publicly decrying specific work.

Interesting that he wants to present the situation in science not as a crisis but as an opportunity, though. From a scientist's point of view it's an opportunity; from an ME patient's view, it has been a crisis for years and will remain so until people start correcting bad previous research.

Wouldn't hurt to tell him that, perhaps.

 

Maybe not all of its own, but the one sure thing is that you will be right if people don't keep trying.

 

My expectations for your letter are realistic too, but I'm grateful that you're writing one. I'm sure whatever you decide to send will be good. There's value in speaking up and it may have some benefit.

 

If nothing else, they can’t later say “oh, but you should have said something! How could we know if you didn’t tell us!”

Thank you for writing, @Graham

 

Well, I was thinking that version 2 would have been the final one, but then ridiculous optimism has always been my main characteristic!

So here is version 3. It is shorter (a little!) and I have tried to put the demands at the front. I have dumped the bit about the criticisms of patients as I decided that we are focusing on the studies and their failings, not on the inappropriate behaviour of the PACE supporters.

You'll probably decide that you prefer some of version 1, with a bit from version 2, plus some from version 3, enough to write a book, and suggest that I prune it down a bit. But in reality, your comments do make me look at things much more ruthlessly.

I brought in a new bit about the triumph of evil when good men do nothing: I'm not sure if that is over-the-top or not. I'd be interested in your opinion and it can easily be removed.

I have been thinking about multi-signatures on it, and decided that it would be better to send it purely as my own personal letter. I have explained that I hope to post his reply on this forum, and so responding to that would probably be an appropriate place to generate a combined response, and call upon the skills of She-who-sorts-me-out to offer to write it.