Open data and the role of citizen scientists in ME/CFS research

petrichor said:
The greatest concern is whether they allow other researchers like Carolyn Wilshire, Jonathan Edwards, Ron Davis, Jose Montoya, Ian Lipkin, etc. to access the data. Most of those researchers would be quite concerned about the data in this collaboration. That, though, is a different question to whether they release the data to citizen scientists, which is less important, I think. If possible it's better for properly trained researchers familiar with the research community to lead the way. (You'd find that, although we can think citizen scientists are great, very few in the research community take them seriously.)

The problem with PACE was different, which was that they weren't releasing the data to anyone at all. That's a different problem. The great success of Allem Mathees was getting them to release the data in the first place, not the fact that he allowed citizen scientists to access the data.
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That doesn't address the concern I raised.

They were sharing PACE data with those researchers they chose to share it with. This allows them to present the impression of independent scrutiny without risking having their results picked apart by people who knew what they were talking about. The preference for 'bona fide' researchers is taken straight out of the PACE playbook. This is from White in 2013:

"I prefer the Medical Research Council’s current
policy on access to research data. The council
considers release only to bona fide researchers,
who work for bona fide research organisations,
and who sign up to the same standards of
respecting the confidentiality of the data as did
the original researchers.3"

http://www.bmj.com/bmj/section-pdf/187912?path=/bmj/346/7910/Letters.full.pdf

We all saw what that led to.

It wasn't 'properly trained researchers' who led the way with PACE, because the people with the best understanding of the issues were patients. This is repeatedly acknowledged by the researchers who went on to be critical of the trial and the way results were spun.

You seem to continue to have faith in systems that have let patients down.

petrichor said:
That came from activism and influencing researchers to do the right thing, not our scientific skills. And that's irrelevant now, because we've got lots of researchers that can represent us.
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Your first sentence is just wrong, and the second sentence seems to wrongly assume that there are now lots of researchers in the CFS field who have lots of time to dig into and pick apart the flawed research of others. Is that really what you're assuming?

petrichor said:
If patients do want to have input on research, they need to make sure they hold themselves to the same scientific standards that they hold others to, that they don't fall into personally attacking people, or that they don't agree with particular arguments solely for the fact it supports their position. Those are the standards that the scientific community tries (and fails, very often, I know) to hold themselves to, and patients ought to try to hold themselves to those standards too.
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There's nothing unscientific about 'personally attacking' those who have behaved badly (assuming that you mean through arguments about the individual's failings, rather than physical violence or something). Andrew Wakefield was personally attacked for being a quack, and there's nothing unscientific about that. It is important that when individuals behave badly they are called out on that. It is in the interest of Establishment figures to promote the view that there's something rather uncivil about wanting to hold authority figures accountable for when they harm others, but that's just BS.

In terms of what is tactically best, it's probably wise to be relatively quiet on calls for accountability and justice at the moment, but that's not because there's anything wrong or 'unscientific' about them, it's just that so many of the people in positions of authority that we need to get on-side live their life according to the warped values of the Establishment.

Also, I'd just given this example of attempts to present legitimate criticism of PACE as "unscientific and sometimes personal attacks". When pointing out methodological problems with research is dismissed as a 'personal attack', we should all support personal attacks.

This dispute between the various protagonists recently surfaced with the PACE trial published in the Lancet [2], which provided evidence for effectiveness of elements of cognitive-behavioural therapy (CBT) and graded exercise therapy (GET) for patients with CFS. This publication triggered unscientific and sometimes personal attacks on the researchers in both the scientific literature [3–10] and via the Internet [11].
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http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02468.x/full
 
@Valentijn and everyone, interesting discussion, thanks for including me.
petrichor said:
I personally think that's pretty fair. Almost every scientist would tell you that people without the necessary training and experience usually have very great overconfidence in their scientific skills and analytical ability, and when you have too many citizen scientists coming in with their own opinions and takes things can turn into a mess. There are now so many bona fide researchers that represent ME/CFS patients, that I don't have a problem as long as the data can make its way into their hands.
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This is quite a hot issue in academic circles at the moment, @petrichor. Stephan Lewandowsy and Dorothy Bishop had a piece published in Nature not along ago that argued that data should be "open but with limitations". The idea was that certain parties could be considered "unworthy" and denied access. The piece caused an outrage amongst academics, who clearly saw how this kind of special pleading could be used to protect data from scrutiny by critics.

There is a back story to the piece: Lewandowsy published some work on the psychology of climate change denial that proved very offensive to some people, and unfortunately for him, some of those did get access to his data and found that there were major coding errors that negated some of Lewandowsy's claims. So you can see his motives for wanting to deny certain parties access to his data. And they aren't pretty.

My view - and that of many others - is that open data should be just that: open data. No exceptions. If your adversaries are out to get you, they will do so irrespective of whether or not you share your data. If people who are incompetent analyse your data, their errors will be very likely be picked up at peer review, and if hey aren't, they will soon be discovered by readers and roundly criticised.

Let the process of science take its course. Its not a secret club, its a process, and anyone should be able to take part.
petrichor said:
We have good scientists representing us that can lead the way. If possible, it's far more effective for them to lead the way, rather than trying to do it ourselves. You're very right that patients play an extremely important role in making things happen, but that comes from activism and influencing researchers to do the right thing, rather than our scientific skills.
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I have to disagree with this statement in the strongest terms! My work on MECFS has been done in collaboration with patient-scientists, and I wouldn't have been able to do it without them. My coauthors and collaborators are incredibly well-read, extremely perceptive, and great writers. They are up there with the best people I've worked with, and I've worked with some very big names in my time.
 
'We have good scientists representing us that can lead the way.'


And I am afraid I would not count on that either. Which are the good ones? How can you be sure? Some of them are good, yes, but even good scientists tend not to disagree with interpretations of data if they know their Dean is likely to get an email suggesting termination of their contract.
 
Jonathan Edwards said:
'We have good scientists representing us that can lead the way.'


And I am afraid I would not count on that either. Which are the good ones? How can you be sure? Some of them are good, yes, but even good scientists tend not to disagree with interpretations of data if they know their Dean is likely to get an email suggesting termination of their contract.
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And how many of the would have the time to spare to do this?
 
Haven't read the latest posts, but I do think that some people choose/are unable to grasp, or accept an argument.....

ETA:missing /
 
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Jonathan Edwards said:
Sorry, but being in the middle of this I am quite clear that the patients have set the agenda. The work of Matthees and Kindlon is just as much science as that of Lipkin and Fluge. And it has been much more important in taking us forward. Most of the lab research out there is still second rate. It will only become first rate because of the patients. The international research community only came into existence because of IiME - run by carers and patients.

The scientists have completely screwed up on this on their own.
The bit about citizen scientists is specifically in there so that Peter White can protect himself from the truth.
It took me a couple of years to learn the reality of this game. It is not pretty.
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Worth repeating.

Adrian said:
Remember patients have scientific skills and could be researchers or have been researchers before they were ill. Patients are too often dismissed as an ignorant group as if once ill any previous skills are lost.
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Or as if it becomes impossible to attain new skills.
 
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I think their actual objection to patients being allowed to speak is that they equate our disease with a form of insanity. Surely the lunatics shouldn't be allowed to have a say! The irony is that they would claim to object to such paternalism and stigmatizing of mental health patients - though I suspect the BPS crew are just as dismissive and abusive of those patients in practice.
 
Valentijn said:
I think their actual objection to patients being allowed to speak is that they equate our disease with a form of insanity.
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Is neurosis a form of insanity? There is clear written evidence that they consider the illness to be neurasthenia, which seems to be considered by some a neurosis. What is not clear is precisely what Wessely, White and Sharpe thought neurasthenia to be, apart from what we suffer from.

Sorry about that but I have been reading something of Shorter's presentation to the CIBA Foundation Symposium in 1992. It's a useful introduction to insanity.
 
Any support for the notion that, "citizen scientists," should not have access to data is as ludicrous as saying that only economists should have access to fiscal figures because the citizen electorate are just too untrustworthy to interpret them, or that only politicians should have access to white papers, or only food companies should have access to ingredient lists or only journalists should have access to the news.

Bollocks!!
 
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