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

Hopefully she's okay.

 

Yes.
Any questions you want me to ask?

 

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.

 

I like that paragraph:

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).

 

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:

Literally lying out of the gate with it being controlled. It's in the name that it was not a controlled trial.

Weird stuff:

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:

Yeah, that's totally why they did not release the minutes without a FOI. Totally. I believe that.

A story in 3 acts:

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.

 

Hi, what are you reading here from Crawley? Are you maybe conflating Crawley and Chalder and reading Chalder's testimony from the tribunal?

 

It's Crawley:
https://s3-eu-west-1.amazonaws.com/pfigshare-u-files/3663015/RS_scienceandsociety_September_2015.pdf

[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)]

 

This one: https://s3-eu-west-1.amazonaws.com/pfigshare-u-files/3663015/RS_scienceandsociety_September_2015.pdf.

It has two pieces, one by Crawley and one by White.

 

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:

 

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.

 

Had you not read this, David? (@dave30th ) I had not. The whole bunch of presentations is interesting as context.

 

No it's new to me. I'm going to read them.

 

thanks I hadn't seen this before

 

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.

 

yep

 

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.

 

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.

 

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:

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: