Discussion in 'PsychoSocial ME/CFS News' started by Liv aka Mrs Sowester, Oct 29, 2017.
I can see why she's now getting rattled
I also asked about vexatious:
2. The number of requests refused by UoB as deemed vexatious (only relevant years are shown).
2010 – 0
2016 – 0
2017 – 5
3. The number of requests rejected by UoB as deemed otherwise exempt (only relevant years are shown).
2010 – 3
2016 – 3
2017 – 1
Please note that some requests from 2017 have not yet been dealt with.
4. The number of requests where information was provided (only relevant years are shown).
2010 – 1
2016 – 2
2017 – 3
Yes, the whole response is available here.
From Bristol Uni website, pdf of their statements re CFS/ME Research:
http://www.bristol.ac.uk/media-libr... Bristol statements about CFS_ME research.pdf
Why is it in the research governance section? This is how that team is described on Bristol's website:
It sounds like the Research Policy or Programme Management teams would be more likely to deal with this sort of thing, or the university's public relations, human resources, or publicity departments.
The Pdf document says that Will Marsh is the author and he is head of media. So it looks like something from the universities PR department.
From what I see when I google it, vexatious in the legal sense means to do something without any real expectation of its success, but simply to harass the person or institution the action is aimed at.
Although there is inevitably a possibility of some people doing this (there always is), I'm sure the majority of these FOI requests are done with very realistic expectations of worthwhile outcome. If they are deemed vexatious, then surely they cannot legitimately just state that without explanation, but need to justify why they deem it vexatious; why they believe the person has no real expectation of achieving a worthwhile outcome, and is doing it for no other reason than to annoy.
And of course to tar the majority by the actions of the few, is disingenuous.
I think they mean it as harassing in either pointless requests, too many requests or looking to uncover something to smear them with. That said none apply, its not pointless (using common sense or historical outcomes), i can't see the number straining their resources (if they have none thats not an excuse, public knowledge is the point of FOIs), and there is no need to smear them, they have used lies and quackery and called it legitimate treatment, the law typically does not consider pointing out lies as defamation though the liars and their enablers often do...
If sufficient information were published instead of withheld then FOIs would be much less necessary. This is failure on behalf of the researchers to publish sufficient information to judge their research to a high standard. Open data is important in order to deal with potential issues in research. When research is based on subjective outcomes or is controversial this is even more important.
Absolutely. I think part of the problem is that some of the lower-grade-science trials/studies seem to actually rely on hiding dodgy data from public scrutiny, almost as if an unwritten/unadmitted part of the protocol. It is this mindset that has to cease, and if people realise they will no longer get away with it, as these genuine FOI requests make clear, then crappy science will hopefully get purged at the most important part of the process - at trial design.
Should we therefore conclude that the FOI included errors? The University says it is aware of harassment.
Their attempt to explain this was attached to the Vada article:
Response from the University of Bristol
A spokesperson from the University of Bristol said, ‘The recent FOI request to the University of Bristol asked for information relating to “official records” of harassment of our staff. The request was general and not specific to any member of university staff. The University does not have a process for “official recording” of harassment by third parties of our members of staff hence the response to this FOI request. However, we are aware that some members of staff have experienced harassment and have provided those colleagues with the necessary support and advice to help with this.
‘The University has long been aware that Professor Crawley in particular has experienced significant harassment and personal abuse over several years. This has included but is not limited to: vexatious FOIs; cyber stalking; malicious emails; blogs/tweets and other social media posts that could be regarded as defamatory; unsubstantiated complaints to multiple institutions including Ethics Committees, The University of Bristol, The Advertising Standard Authority, the GMC and funders. The University considers this behaviour to be unacceptable.
‘The University has previously reviewed Professor Crawley’s research projects and found they are being conducted in line with applicable research ethics and governance requirements. The University has supported Professor Crawley in dealing with the harassment and provided legal, governance and research advice and support when required.’
Evidence please, Bristol Uni. Or withdraw the accusations.
Exactly. They didn't have any records or other evidence for the FOIA request, but are still happy to take Crawley's accusations at face value and repeat them to a wider audience. They need to put up or shut up (after apologizing, preferably).
The British establishment in it's many forms doesn't do apologies. If they do, they squeeze out something ambiguous and inadequate, preferably after anyone involved is dead.
Basically, well put.
Stiff upper lip requires it to be
Perhaps a Prime Minister will give an official apology in 2135?
I think we need to be more cautious on this issue. It looks bad to the general public if she is receiving hate mail and we simply refuse to believe it (it looks like we’re brushing it under the carpet, even if there’s no dirt to hide). I also don’t want to be that type of person, however much I disagree with someone’s research/ideology, if they’re actually being harassed I’d like to see that be taken seriously.
How can we really evidence this hasn’t happened? We know we haven’t sent it but very hard to prove no one has. It might well not even be pwme, could be distraught parents or someone misdiagnosed using a broad CFS criteria.
From an advocacy point of view, I think we need to change the conversation because we can’t prove an absence (for example a research project on cyberstalking and chronic illness will be published at some point, we can say “we experience this too” type of thing).
On the other hand, in light of recent seeming misinformation in public talks, it would be interesting to know if Bristol Uni have seen the evidence despite not officially recording it.
Best you can do is keep hammering away at the stuff we know to be incorrect. Libellous blogs and the bulk of her research.
As i said earlier if its really happening its in everyone's best interests that it be made public (including ours), if she is lying then her reputation will take a hit as a consequence of her own actions, if she is telling the truth then those responsible should be charged if they have committed a crime. If they consider a FOI a crime and people telling the truth a crime then a court will smack her and her institution down again.
We should have our hands clean especially since she is the one peddling lies and harming patients. As much as she is dangerous to people who are sick that does not give anyone the right to inflict abuse on her and it would be counter productive to do so. Hence we have nothing to lose but she does if she is lying again.
It is of course very wise to take action against her lies, but not violence or threats of it, but in proving/publicizing her lies, showing the flaws in her research, in finding ways to fund real research, in finding a disease mechanism and objective test. Narcolepsy was believed to be psychosomatic and even though dream analysis had a zero percent success rate it was not until Orexin was discovered and its deficiency proved to cause sleep attacks was the psychological theory buried and forgotten. This only happened in the early 2000s so not like its ancient history.
Debunking PACE was the right way to do it, fight to get the data, reanalyze to show the lies and fight to get it retracted. Its not over yet but its the right approach.
Unrest is a great PR move, conferences like OMF and others are great moves, Rituximab was a chance encounter but the docs did the right thing in recognizing the result and pursuing it whereas most docs would have ignored the patients subjective findings.
So i hope in the very near future we have a disease mechanism and her CBT talks will make her look like a fool if she keeps giving them. Personally i also want an apology for the harm she has done and the parents of some of the children she has harmed may consider legal action.
I agree that if there are people behaving badly, then we want them charged, or at least publicly shamed as individuals for what they have actually done. The dirty trick of trying to present legitimate criticism and FOI requests as 'harassment' by tying it to purported abuse from other people is just BS.
I also agree with Jenny that this is a topic where there's good reason for caution, and to be aware of how our comments and concerns might appear to outsiders. It's a difficult balance to get right.
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