'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

MEMarge said:
Yes.
Any questions you want me to ask?
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Are you attending the talk?

I don't know. Bishop co-wrote that really annoying Nature piece that indicates she had no real understanding of the problems around PACE:
http://statmodeling.stat.columbia.edu/wp-content/uploads/2016/02/Lewandowsky-Bishop-2016-Nature.pdf

She had also co-arranged this conference where criticism of PACE and SMILE were presented as exogenous threats to science:
https://s3-eu-west-1.amazonaws.com/pfigshare-u-files/3663015/RS_scienceandsociety_September_2015.pdf

She then failed to address the fact that SMILE was clearly 'prospectively' registered after it had started, and after data from trial participants had led to the primary outcome being changed: http://www.virology.ws/2018/06/25/trial-by-error-my-exchange-with-professor-bishop/

You could challenge her on something related to that, but I expect it could easily go wrong and be presented as abusive harassment.

Maybe better to ask Chambers something? - I think that he expressed some vague concerns about the refusal to release PACE data although always gave the impression that he didn't want to mess with Wessely & co.

Probably best to only ask something prompted by the meeting? Maybe about the role patients should be able to play raising standards for the research that affects their lives, but the danger of prejudice, stigma and (particularly in the UK) snobbery getting in the way? Could mention the Bastian concern: "Instead of responsiveness to criticism, some – not all – researchers have put massive effort into discrediting the whole community and rallying other researchers to their defense. It’s been a collective ad hominem attack." https://blogs.plos.org/absolutely-m...-the-me-cfs-exercise-dispute-matters-so-much/

edit: Mentioning that you were attending partly in the hope of thanking Bastian could make you seem less threatening? Maybe I'm over-thinking things.

tbh, I think that my instincts are often too adversarial for UK academia, so any suggestions I make are likely to lead to you being viewed as an extremist! Hope it's interesting for you.
 
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Esther12 said:
Are you attending the talk?
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I like that paragraph:
Esther12 said:
Probably best to only ask something prompted by the meeting? Maybe about the role patients should be able to play raising standards for the research that affects their lives, but the danger of prejudice, stigma and (particularly in the UK) snobbery getting in the way? Could mention the Bastian concern: "Instead of responsiveness to criticism, some – not all – researchers have put massive effort into discrediting the whole community and rallying other researchers to their defense. It’s been a collective ad hominem attack." https://blogs.plos.org/absolutely-m...-the-me-cfs-exercise-dispute-matters-so-much/

edit: Mentioning that you were attending partly in the hope of thanking Bastian could make you seem less threatening? Maybe I'm over-thinking things.
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I agree that it might be better not to criticize D. Bishop directly and to name particular trials on ME only as examples as a general problem that all trials on therapist-delivered treatments bring with them if they don't apply any objective outcomes and at the same time cannot be blinded.

One quesion then could be how it is possible that so many trials are still ignoring these basic principles of good research and how to prevent that more of this bad science is going to happen (naming PACE and some of the recent studies).
 
Esther12 said:
Are you attending the talk?

I don't know. Bishop co-wrote that really annoying Nature piece that indicates she had no real understanding of the problems around PACE:
http://statmodeling.stat.columbia.edu/wp-content/uploads/2016/02/Lewandowsky-Bishop-2016-Nature.pdf

She had also co-arranged this conference where criticism of PACE and SMILE were presented as exogenous threats to science:
https://s3-eu-west-1.amazonaws.com/pfigshare-u-files/3663015/RS_scienceandsociety_September_2015.pdf

She then failed to address the fact that SMILE was clearly 'prospectively' registered after it had started, and after data from trial participants had led to the primary outcome being changed: http://www.virology.ws/2018/06/25/trial-by-error-my-exchange-with-professor-bishop/

You could challenge her on something related to that, but I expect it could easily go wrong and be presented as abusive harassment.

Maybe better to ask Chambers something? - I think that he expressed some vague concerns about the refusal to release PACE data although always gave the impression that he didn't want to mess with Wessely & co.

Probably best to only ask something prompted by the meeting? Maybe about the role patients should be able to play raising standards for the research that affects their lives, but the danger of prejudice, stigma and (particularly in the UK) snobbery getting in the way? Could mention the Bastian concern: "Instead of responsiveness to criticism, some – not all – researchers have put massive effort into discrediting the whole community and rallying other researchers to their defense. It’s been a collective ad hominem attack." https://blogs.plos.org/absolutely-m...-the-me-cfs-exercise-dispute-matters-so-much/

edit: Mentioning that you were attending partly in the hope of thanking Bastian could make you seem less threatening? Maybe I'm over-thinking things.

tbh, I think that my instincts are often to adversarial for UK academia, so any suggestions I make are likely to lead to you being viewed as an extremist! Hope it's interesting for you.
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Interesting. I'm reading Crawley's bit, most of it is BS, but noted this nugget: "The abuse stopped". That's definitely not what she's been saying since and certainly not what was claimed at the information tribunal or her fake TEDx letter.

This is the first time I've seen an account of what the "harassment" is: she claims someone dubbed speech over a video of one of her talks. Then went to the police with that. That's such a ridiculous story, it doesn't hold at all. The police doesn't give a damn about a random YT video with fake dubbing. They don't have time for nonsense like this.

Also literally nobody asked her if LP worked to such a degree she "had" to test it, this is also an obviously fake backstory. She's either delusional, with a weird victim complex, or a pathological liar. I don't get this. This is not someone who should have any position of authority over vulnerable children.

Also LOL at White:
The PACE (Pacing, graded Activity and Cognitive behaviour therapy: a randomised Evaluation) trial was a randomised controlled trail
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Literally lying out of the gate with it being controlled. It's in the name that it was not a controlled trial.

Weird stuff:
As a result of concerns about confidentiality, one participant withdrew their consent for us to use their data, some two years after leaving the trial; this led to us having to restart the analysis, which caused a four month delay in publication of the main results.
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How would a single patient withdrawing consent cause a 4 months delay? Is that a BS explanation or are they that bad?

OK this is unadulterated bullshit:
our patient representatives asked us not to release minutes of meetings for fear of harassment
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Yeah, that's totally why they did not release the minutes without a FOI. Totally. I believe that.

A story in 3 acts:
A large number of Freedom of Information Act requests seeking information on all aspects of the trial were received since the main results were published in 2011.
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Some requests were complied with [...] All appeals were rejected
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Our deliberate policy, to help allay concerns about the trial, was to be as transparent as possible
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Selective compliance is literally the opposite of transparency.
 
Hi, yes I did go.

Hilda Bastian had to pull out as her Mum sadly died last week.

It was interesting and there are good plans going forward for improvements in trials etc, but no mention of combating previous farces, such as PACE.

There was only time for a couple of questions afterwards. There was a drink and chat session somewhere afterwards, but i didn't join that.
 
It is interesting the way that abusive emails and FOI requests are run together as if they had any similarity. Abusive emails are harassment. FOI requests are unlikely to be in the context. It seems very unlikely that the same people (as part of an organised campaign) were responsible for both. She must have known that all too well.
 
dave30th said:
Hi, what are you reading here from Crawley? Are you maybe conflating Crawley and Chalder and reading Chalder's testimony from the tribunal?
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It's Crawley:
https://s3-eu-west-1.amazonaws.com/pfigshare-u-files/3663015/RS_scienceandsociety_September_2015.pdf

The fact that I was doing a trial investigating an alternative intervention and had criticised the XMRV story, made a few people very angry indeed. Over the next 12 months, I was sent aggressive and threatening emails, dealt with lots of Freedom of Information requests and was reported to: the General Medical Council (GMC; our regulator); the University of Bristol (my employer); the National Society of Protection of Children and the National Research Ethics Service.
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I was defamed in the accusations made to the regulatory authorities and in an article in the Church Times. A YouTube clip was made from the talk I gave to the patient support group dubbed with different words. The complaints were quickly dismissed and the University and patient support groups were supportive. The police got involved and helped me realise the complaints came from what they called “extremists”, that this was a co-ordinated campaign and that nothing had come from my patient group. They recommended that I and other CFS researchers went public and I told my story through newspapers, TV, radio and scientific journals. The abuse stopped. I have received one apology three years later.
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[Science and Society at the Crossroads: Skepticism vs. Denial and Elitism vs. Public Engagement, Report on an international meeting at Chicheley Hall, 15-16 June 2015; Principal organizer and curator: Prof Stephan Lewandowsky (University of Bristol)]
 
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MSEsperanza said:
It's Crawley:
https://s3-eu-west-1.amazonaws.com/pfigshare-u-files/3663015/RS_scienceandsociety_September_2015.pdf
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I have no idea what she's talking about with XMRV. It was created in the lab? What?

And always strawmanning: claiming people were certain that this was it, this was the cause, insistent on it, screaming from the rooftops that this was guaranteed to be it. Why do they have to caricature behavior and hyperbolize that much? It was a rare lead, people wanted it researched, they were disappointed it wasn't, that's how research works.

Their ridiculous assumptions lead them to systematic fundamental attribution error. They keep describing perfectly rational and measured behavior as if people were running around like headless chickens with their tails on fire.

Esther Crawley's recollection of David Tuller asking her a simple question, Simpsons did it:
3mbWjIm6lDY7S2FU_TUNHTXx9dheZd5LvtpZsy5Nc7o.jpg
 
rvallee said:
I have no idea what she's talking about with XMRV. It was created in the lab? What?

And always strawmanning: claiming people were certain that this was it, this was the cause, insistent on it, screaming from the rooftops that this was guaranteed to be it. Why do they have to caricature behavior and hyperbolize that much?
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In a sense 'created in the lab' is exactly right. It seems that a stray mouse retrovirus got into lab cell cultures and underwent a change in its DNA to become a new variant that infected cells in ME and prostate cancer studies. The change in DNA may have been trivial and irrelevant but it allowed the people trying to replicate the work to pinpoint where the 'new strain' had been created - or perhaps more accurately, created itself. At least that is how I remember it.

I think what she was doing was more subtle than strawmanning. I have come across these people who were certain that this was it, this was the cause, insistent on it, screaming from the rooftops that this was guaranteed to be it. They used to post on another forum. The calumny is to suggest that these are the same people, in an organised campaign, as those putting in FOI requests. There is nothing organised about the first lot and nothing reprehensible about the second lot.
 
dave30th said:
thanks I hadn't seen this before
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It interests me that these presentations are in June 2015. White and Crawley will already have been aware by then that the criticism of their work was spreading beyond those with a direct interest to the wider academic world. White's piece contrasts sharply with his presentation in Bristol in 2014. It is very matter of fact (or sort of fact) without any claims of attacks on science.

Re-reading Hilda Bastian's piece I note two things. One is how well researched it is on detail and how clearly argued. The other is that, despite this, there is absolutely no mention of the fact that the PACE trial design was a non-starter in terms of providing reliable information from day one (2004). It continues to surprise me how few people seem to understand the basic problem of bias. And yet everyone is aware that a trial of a drug with this type of design would be considered worthless.
 
The lab cell culture story is a nice little soundbite but it is like the patient anonymity story for the PACE trial data - it might be true but it was late in coming and has some very big holes in it. I have no particular feeling that XMRV is associated with ME. I hope not because it would be very difficult to treat, but the "science" of the controversy was abysmal and unlikely.
 
Mithriel said:
The lab cell culture story is a nice little soundbite but it is like the patient anonymity story for the PACE trial data - it might be true but it was late in coming and has some very big holes in it. I have no particular feeling that XMRV is associated with ME. I hope not because it would be very difficult to treat, but the "science" of the controversy was abysmal and unlikely.
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The lab cell story looked to me to be straightforward good quality molecular biology when Greg Towers presented it to the IiME meeting. What are the holes in tracking down a sequence change to a particular lab? In what sense was it late. Up until 2011 nobody checked and the answer was available fairly soon after. What would be unlikely about a lab contaminant. It happens all the time and a huge amount of effort goes into minimising it.
 
Mithriel said:
The lab cell culture story is a nice little soundbite but it is like the patient anonymity story for the PACE trial data - it might be true but it was late in coming and has some very big holes in it. I have no particular feeling that XMRV is associated with ME. I hope not because it would be very difficult to treat, but the "science" of the controversy was abysmal and unlikely.
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I think it's worth being cautious about suggesting the claims from White/Crawley, etc are BS, but the White way has presented this participant's decision to request her data was removed as if it were related to concern about FOI requests, or anything like that. That's spin. Tuller spoke to this participant, and her concerns were about the behaviour of the PACE researchers, and their failure to inform her of their links to the insurance industry:

Another of the four withdrew her consent retroactively and forbade the researchers from using her data in the published results. “I wasn’t given the option of being informed, quite honestly,” she said, requesting anonymity because of ongoing legal matters related to her illness. “I felt quite pissed off and betrayed. I felt like they lied by omission.”
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http://www.virology.ws/2015/10/22/trial-by-error-ii/

White's played this game a few times, seemingly assuming that academic audiences will just trust him without question.

edit:
This page is now off-line: https://www.gov.uk/government/uploa...file/487271/Online_Responses_CitizenSpace.xls

It had included a submission from Peter White when he was trying to get universities exempted from the FOIA:

Q: What protection should there be for information relating to the internal deliberations of public bodies? For how long after a decision does such information remain sensitive? Should different protections apply to different kinds of information that are currently protected by sections 35 and 36? - What protection should there be for information relating to the internal deliberations of public bodies? For how long after a decision does such information remain sensitive? Should different protections apply to different kinds of information that are currently protected by sections 35 and 36?

A: It is an important principle of science that internal deliberations should be undertaken in a "safe space", allowing for freely expressed arguments for and against decisions made in planning and implementing a scientific study. It is equally important that such decisions, and the reasons for making them, are recorded formally and accurately, so that these documents can be used as source references used at the time of writing up and publishing research. This would not be possible, or would be very limited, if such minutes of such meetings were known to be liable to public release. This would have a "chilling" effect on open discussion This is particularly the case in Medicine where the principle of patient involvement in research is so valuable - individual patients and patient organisations are vulnerable to abuse and harassment if their names were to be made public as part of such minutes. Making such data exempt from the Act would protect scientific work in controversial subjects within and outside of medicine. Please refer to Information Tribunal decision notice Appeal No: EA/2013/0019, where Judge Hughes outlines these arguments in more detail, in an appeal regarding a medical research trial that I led (see answers to question 6).

Q: Is the burden imposed on public authorities under the Act justified by the public interest in the public’s right to know? Or are controls needed to reduce the burden of FoI on public authorities? If controls are justified, should these be targeted at the kinds of requests which impose a disproportionate burden on public authorities? Which kinds of requests do impose a disproportionate burden? - Is the burden imposed on public authorities under the Act justified by the public interest in the public’s right to know? Or are controls needed to reduce the burden of FoI on public authorities? If controls are justified, should these be targeted at the kinds of requests which impose a disproportionate burden on public authorities? Which kinds of requests do impose a disproportionate burden?

A:
I am the principal investigator (PI) of the PACE trial, the main findings of which were published in the Lancet medical journal in 2011 (White PD et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet 2011;377:823-36. doi:10.1016/S0140-6736(11)60096-2). I write here in my personal capacity.

The PACE trial is a trial of four treatments for patients suffering from chronic fatigue syndrome (CFS), which is sometimes called myalgic encephalomyelitis (ME). CFS is a controversial condition, and attracts a strong patient activist voice. This group has used the FoI Act many times since this main paper was published, asking for all sorts of data, from the minutes of all meetings overseeing the trial to all of the patient data collected. See the following for a description of activism (http://www.bmj.com/content/342/bmj.d3780)

The administration of these requests has caused a very significant burden on the University's FOIA manager, the University's academic department of law, and myself as PI. I have had to spend a considerable amount of time addressing the requests, advising colleagues, collating the views of my research colleagues at other universities, and writing witness statements for the various appeals (internal, ICO and IT). This means that my further research into the causes and treatments of this debilitating and misunderstood illness has been delayed. Paradoxically, the time taken up in this has delayed publication of the papers that contain some of the very data that have been requested.

Perhaps most damaging of all have been requests by two trial ex-participants to "destroy" all their data collected on them during the trial because of their concern that the data will not be held securely and confidentially, something we promised them to do as part of their giving informed consent. The first such request was received after we had finished all trial data collection and had started the main analysis. After some months of trying to obtain advice on what to do, we were advised to destroy this ex-participant's data, which we did (and which took some time to do due to the complexity of the data), but this meant that we had to restart the analysis, which caused several month's delay in publishing the main results paper in 2011. This paper was important since it showed that there were two treatments for this condition which were safe and moderately effective. It is estimated that some 250,000 people suffer from CFS in the UK.

Section 22a of the Act is insufficient protection for science into controversial subjects, and requires that the research is on-going, so is irrelevant to completed research. We need science in the UK to be protected or it will continue to be damaged as this trial has been (other examples include climate change science, and research into the health effects of tobacco). Exempting Universities from the FOIA would achieve that. Exempting scientific research data produced by Universities and other higher educational institutes might be a workable alternative.
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