Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Nick Brown (good science star): My (current) position on the PACE trial

Discussion in 'General ME/CFS News' started by Simon, Dec 14, 2015.

  1. Simon

    Simon

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    A brilliant blog from Nick Brown about the PACE trial: as he said, he has no special interest in mecfs or PACE, but is big on Good Science.

    You may have heard of Nick Brown last year due to this work that made headlines worldwide:
    The British amateur who debunked the mathematics of happiness | Science | The Guardian


    Brown says he's working on the basis that the claims of harassment are not going to go away.
    He says the argument against PACE will go on otherwise, because people who are chornically ill will go on being chronically ill and concerns over research on their illness will continue. Transparency throught data release could help move things on.

    For me, this is the heart of the piece, that tackles the harassment meme head on

    Another gem, disagreeing with the idea that you shouldn't release data to people because they are a bit stroppy (he discloses that Jim Coyne is his PhD supervisor, and "can be a bit shouty at times. But this is not kindergarten".
    Re King's argument that only a health economist would be competent to handle the data, he says
    Finally, Nick Brown echoes calls for the authors to release the data (as they promised to do when they submitted the article), or have the paper retracted.

    I've probably quoted more than is fair (will check with the author) - and please do read his blog.​
     
    Last edited: Dec 14, 2015
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  2. worldbackwards

    worldbackwards A unique snowflake

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    By complete coincidence, I read this guy's blog for the first time yesterday on another 'bad science' type subject. Seems like a smart guy!
     
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  3. Marco

    Marco Grrrrrrr!

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    Maybe we should rename the condition Chronic Fatigue and Death Threat Issuing Syndrome (CFDTIS) given that some can't seem to mention one without the other.

    I know you're a fan Simon (with good reason I'm sure) but for the life of me I can't understand why he had to bring in the 'death threats' issue again. If he wanted to show that he didn't have a dog in this fiight all he had to do was state that he was agnostic on whether CBT/GET was or wasn't helpful. As he states himself all that matters is whether the data, analysis and reporting were above board and all other considerations are irrelevant. He also acknowledges that he is 'bewildered' by the argument that releasing the data would somehow expose the researchers to (further) harassment. So why offer any credence at all to that defence?

    I'm afraid as a rhetorical device to make a point it didn't work and only serves to perpetuate this meme that frankly I'm fed up to the teeth with (in a non-violent non-threatening way :rolleyes:).

    I also hope that whichever individual(s) originally made such threat way back when (assuming they did) that they're thoroughly proud of themselves.

    Rant over!
     
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  4. John Mac

    John Mac Senior Member

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    The author
    I think his point was that even "if" this was true it still doesn't give the researchers an excuse for not releasing the data.
     
  5. worldbackwards

    worldbackwards A unique snowflake

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    Because this is basically being used as the argument for not releasing the data by people defending KCL. We may not like it, but it isn't possible to ignore it. I'd rather see someone taking it to bits than pretend it will go away, as it has so consistently failed to do.
     
  6. Marco

    Marco Grrrrrrr!

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    I'm happy to be corrected but the response refusing the data didn't mention 'death threats' but did refer to Coyne's request as "vexatious" or to "lack serious purpose" or that its intent is "polemical" even before raising the possibility of further harassment so it wasn't 'the' reason. There was sufficient 'meat' there to discuss how ludicrous their reasons for refusal were without bringing in 'death threats' (which suggests the author wasn't entirely ignorant of ME/CFS).

    Put it this may - if there hadn't been any death threats would Coyne's request still have been considered 'vexatious'? I bet it would. I agree that this meme won't go away - not while every article drags in out again.
     
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  7. worldbackwards

    worldbackwards A unique snowflake

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    I don't disagree with with you, but it has been wheeled out by people defending KCL (as opposed to KCL themselves) and, as such, I think it is better dealt with. It's basically been used as a dead cat in this debate to distract from what's going on, but it is a powerful one that has the potential to shut people up. I like the fact that someone is trying to diffuse it.
     
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  8. John Mac

    John Mac Senior Member

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    Agreed. Even with their most extreme excuse he's saying it's not a good enough reason not to release the data.
     
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  9. Marco

    Marco Grrrrrrr!

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    But what do think will be the 'take away message' from uninterested (in ME/CFS) sceptic types reading this blog?
    'My, what an unfortunate breach of PLos ONE protocol' or 'Bloody Hell - death threats? Glad I just have to work with smoking beagles!'.
     
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  10. John Mac

    John Mac Senior Member

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    I'm sure some people will take away that message, but that's a battle we will have to win further down the line. Want we need to do now though is get that data released and this blog post will help in that IMO.
     
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  11. Sasha

    Sasha Fine, thank you

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    Just posted a comment (held in moderation). I think it's a valid thing to bring up - this "even if the worst is true, the PACE authors are still talking rubbish". We need the focus on getting the data released.

    I understand your frustration, @Marco, but one cesspit at a time... :cool:
     
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  12. adreno

    adreno PR activist

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    Can't wait to see what PLOS' response to this matter will be. I really hope they are serious about enforcing their policy.
     
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  13. snowathlete

    snowathlete

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    I think the blog is well reasoned.
    It's not the author's fault that accusations have been made. Like others outside of ME/CFS how is he supposed to know if it's true or false? He understandable assumes the accusations are true, because like me before I got this terrible disease I didn't realise there were such despicable people out there in prominent positions in science who would either a) make this stuff up to discredit us, or b) use a very small number of cases (perhaps even just one) to discredit patients in this way. It would have been unthinkable time when I was well but now, sadly, I know better.

    The authors overriding point is that it doesn't matter when it comes to the data needing to be shared. And I'll happily take that for now as I believe getting the data out will prove we have been right that there has been major misrepresentation from PACE and that will lead to more ppl listening to us and questioning claims of harassment etc.

    As an aside I do think we need to tackle these allegations because it discredits us and secondly makes people want to steer clear of us, wish is sad as sad gets cause we are just nice ppl on the very large whole. Some of the nicest ppl I have ever met in my life have ME/CFS.
     
  14. Marco

    Marco Grrrrrrr!

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    Of course you can win the battle and lose the war but strategically (and don't get me wrong I am grateful that science sceptics are getting on board on this) I would have thought there was more immediate mileage in the latest PACE paper where their own analysis showed no lasting benefit over specialist (standard i.e. bog all) medical care. No need there to go through any hoops over data release.

    But enough from me on this topic.
     
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  15. A.B.

    A.B. Senior Member

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    Any article which supports release of data and proper science is a small victory.
     
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  16. sTeamTraen

    sTeamTraen

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    Hallo everybody,

    I'm the author of the blog post in question. Thank you for your kind words, especially Simon.

    To Marco (*waves across France from Strasbourg*): I think worldbackwards has summed up what I would want to say in reply to your first post. Some people are going to believe the harassment story, not least because it will suit their purposes to do so. Like it or not, the CFS community cannot ignore that issue and hope it will go way, because it won't, and some people in the press (e.g., Rod Liddle) will use it against you.

    There is one tiny thing in Simon's summary of my post that I want to... correct? Clarify maybe. It's this:
    >>Brown says he's working on the basis that claims by researchers of harassment are true
    I think I'd prefer to say that I'm working on the basis that the claims of harassment are not going to go away. I actually have no way to know if they are true or not, barring an awful lot of research that I don't have time to do. That's also true of most of the neutral scientists out there, who I think represent a good chance of getting to the bottom of the PACE trial. Marco is right that it's a meme, but that meme is going to be difficult to shift; that may be something the CFS patient community will just have to live with for now, unjust though it is. (I'm not very political, with any size of "p", and I'm not going to get involved in the politics here, important though they undoubtedly are, because I don't have the time, I don't live in the UK, and I have other fish to fry. Again, per my post, I cannot be your ally in any committed sense, although you all have my best wishes, and I will do what I can behind the scenes with my very limited range of contacts.)

    Hence why, in my post, I used the analogy of the Muslim passengers being thrown off a plane. It's a slightly imperfect analogy because we know that a few Muslims are terrorists and we don't (as far as I know) have any criminal convictions of CFS activists harassing scientists, but to a first approximation I think it will do. CFS patients asking for the PACE data face comparable problems to Muslims buying one-way air tickets, or three pressure cookers, or big rucksacks. It is going to arouse suspicion. That's a fact, unfortunately, and it's not going to go away. But we know that we have to deal with the immediate problems (people being unnecessarily paranoid about Muslims) before we're going to be able to eliminate xenophobia, and dealing with the first doesn't mean that we don't think the second is unimportant.

    I didn't expect for a second that the investigators would give Jim Coyne their data. Why not? Because it's easy to portray him as a harasser. He writes blog posts that are, to understate somewhat, "pithy". He also knows many of the people involved personally. Of course he's not a neutral party. Now, again, that is a terrible reason not to give him the data, but it's what's going to happen.

    That last phrase reminds me of a UK TV programme from a few years back in which Jane Horrocks played Mrs Pritchard, a completely ordinary person who sort-of-accidentally became Prime Minister. She's been in office about two days when a Foreign Office bod shows up to say, "Sorry, Prime Minister, but there's been an incident. The Iranians have captured a dinghy with six Royal Marines on board. They will very likely be tried this afternoon and shot at dawn". Mrs Pritchard is horrified: "But why?" The FO bod replies, "Because that's what happens".

    Before I became an early-retired, full-time troublemaker, I spent some time on the periphery of a large, bureaucratic organisation. That was how it worked: there were rules, and there was what actually happened. The rules applied up to a certain level, and then, once you got to a certain floor, they didn't apply any more. Now occasionally, someone would breach the official rules so egregiously that Something Had To Be Done (usually if the press got a whiff of the story), but otherwise, the rules about transparency and all that good stuff were applied only when it didn't inconvenience anyone high up.

    Importantly, however, this did not mean that any of the people involved were evil. Indeed, given the nature of the organisation, most of them were classic Guardian or Independent readers. That's another side of this discussion that needs to be considered: I genuinely don't believe that the PACE scientists are acting in any way with malicious intent. They are not, to use a familiar image, sitting in a swivel chair, stroking an overweight white Persian cat. This is all about the everyday adventures of people who have to make their way through life while surviving the stupidity of a bureaucracy. (Small self-promotion: this is exactly what I deal with in my part-time work as a coach.)

    Once the decision has been made ("we won't give the data to [potential] harassers"), consistency has to be maintained; otherwise cognitive dissonance (one of the few things in psychology that almost everyone agrees on) would set in. Coyne's request was far too easy for King's to assimilate with the requests from patient advocacy groups, and remember, they've decided that patient advocacy groups are harassers; to reconsider that decision is almost literally inconceivable in the bureaucratic mind. I actually have some sympathy with the researchers here. They thought they were doing science, and now they also have to cope with the socio-political fallout. Most of them didn't sign up for this. They are hiding behind the administrators, but I promise you that most of them don't fell good about it.

    I closed my blog post with a reference to Peter Sandman, who is an expensive American risk consultant. I really recommend looking at the videos on his site (psandman.com). He explains, to anyone who will listen (he has consulted for environmental activists, governments, and big business), how to get your case across in the best way possible. And, although his style is not always especially lively, it's impossible not to smile at the terrors posed by "dimethyl meatloaf".
     
  17. Sasha

    Sasha Fine, thank you

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    Hi Nick, and welcome to the forums. Good of you to blog about this hot topic!

    Thank you, and totally fine. What we patients want are not CFS allies but allies of good scientific practice, because our interests are perfectly aligned. I don't expect neutral scientists to wade through the political history of what has been done to this disease but I do expect them to act in their own interests and the interests of science in general. I think James Coyne has done a spectacular job of getting scientists to pay attention to the bad scientific practices that surround PACE.

    The PACE authors might not want to give him the data but I hope that PLOS One force them to. And if he gets dismissed (which would be a horrific outcome for PLOS One's reputation), I hope there'll be an "I am Spartacus" movement in which a lot of researchers ask for it, including some big-name methodologists such as Nosek.
     
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  18. Marco

    Marco Grrrrrrr!

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    .

    Gullible then?

    No they were doing career building and politics. The only reason they wouldn't feel good is due to any threat to their little CBT pyramid scheme.
     
    Last edited: Dec 14, 2015
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  19. Sasha

    Sasha Fine, thank you

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    Would you like to take a look at this petition and the background pages to it and see if the use of the "normal range" analyses look to you ordinary people just trying to make their way through life?

    I would also like to think that the PACE researchers are well-intentioned people just doing their best, who at worst just got caught up in a bit of dysfunctional groupthink. But I can't square that with them choosing a threshold for the recovery of physical function (60/100 on the SF-36) that is so low that it's below the level of trial entry and close to the mean score of patients with Class II congestive heart failure, and them then using that to tout CBT and GET as effective therapies for CFS, to their own benefit and at the risk of serious harm to patients.

    Can you? (That's a serious question from one rational person to another, not an attempt at point-scoring. As a neutral newcomer to PACE, I'm genuinely interested in how you see their failure to even flag up that contradiction in the paper, let alone to address it.)

    Edit: BTW, I'll understand if you don't have time to do this reading but this kind of issue is why many people with ME ("PWME") find it hard to see the PACE authors as well intentioned.
     
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  20. snowathlete

    snowathlete

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    Welcome and thanks for posting.
    I think you talk a lot of sense, and it's all very reasonable in my opinion. The only bit I don't agree with is about the intent of the authors, though I understand why you think what you do. I've just seen too much repeated behaviour that many of them are putting their own income and status way in front of good scientific behaviour and the care of patients. But I don't want to bog down the discussion in that, I think the data will speak for itself, but the authors will do everything they can not to release any of it, and with the perceptions people have of the ME/CFS community it is all too easy in my view for them to get support for keeping it locked away. I hope enough people care about it from a non-ME/CFS point of view, a open data point of view, to push for it to be released, but I worry that without having anything riding on it, the science community will just give up because of the strong resistance from the authors.
     

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