worldbackwards
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And just a whiff of "dangerous mental health patient" cliché whilst we're at it. No irony there then.Don't forget the anti-vaccine lobby!
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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And just a whiff of "dangerous mental health patient" cliché whilst we're at it. No irony there then.Don't forget the anti-vaccine lobby!
I shall look forward to this:What Coyne may be referring to is the comments by the Barts Chronic Fatigue Service (headed by Peter Denton White) on the draft NICE guidelines.
On this, it might be worth checking the dates carefully. If one or more of the FOI submissions from QMUL or KCL claimed that the cost of providing (subsets of) the anonymised datasets would be prohibitive, at a time when the anonymised datasets already existed and had been provided to the Cochrane report, it seems to me that would be false witness...anyone know if that might be contempt of court?But they gave themselves and other reviewers access to individual patient data, according to the Cochrane review protocol:
So they admit that it is possible to anonymize the data and have already given it to the Cochrane reviewers, as mentioned in a previous post..
What Coyne may be referring to is the comments by the Barts Chronic Fatigue Service (headed by Peter Denton White) on the draft NICE guidelines.
Parking badge one is the first comment here:
http://forums.phoenixrising.me/inde...ice-guidelines-insight-into-their-views.1239/
(If you ever want to find it, it's in my signature!)
I think it's worse than that. The purpose of the fictional anti-psychiatry narrative is to label us as loathsome and deranged bigots, not just mere anti-science extremists.I think it's more like a cross between climate change deniers and animal rights activists. Just pitched right to push all the scientists' buttons.
Well, I got this far...I think it's worse than that. The anti-psychiatry narrative is used to label us as loathsome and deranged bigots, not just mere anti-science extremists.
And just a whiff of "dangerous mental health patient" cliché whilst we're at it. No irony there then.
The problem is much deeper and more extreme - they aren't just saying that we can't be trusted. They're saying we're basically a hate group who are prejudiced against people with mental illnesses.It's like what @octoberpoppy said in her blogpost the other day - we aren't even trusted to have an opinion. Unless it's the "right" one.
On this, it might be worth checking the dates carefully. If one or more of the FOI submissions from QMUL or KCL claimed that the cost of providing (subsets of) the anonymised datasets would be prohibitive, at a time when the anonymised datasets already existed and had been provided to the Cochrane report, it seems to me that would be false witness...anyone know if that might be contempt of court?
I sense that given the current climate of QMUL presenting itself as the victim of a dangerous, anti-science rabble, it would be politically risky to claim that someone had broken the law in denying the release of information.
It's a weapon of last resort in my view, but worth considering if compelling evidence exists that an offence has been committed, and all other attempts to obtain the data have been exhausted.
Hope Coyne or someone highlights this stuff in a blog somewhere. Needs more attention.Thanks for reminding me of St Bart's awful comments to the draft NICE guidelines, I'd forgotten just how bad they were!
I spotted this bit which is very apposite to the PACE long term CBT/GET paper results:
(vii) On Recovery times:
Draft text:
6.3.6.16 When planning a programme of GET the healthcare
professional should:
• discuss with the patient ultimate goals with the patient that are
important and relevant to them. This may be, for example a 2 x 15
minutes daily brisk walk to the shop, a return to previous active
hobby such as cycling or gardening, or, if more severely affected,
sitting up in bed to eat a meal.
• recognise that it may take weeks, months, or even years to achieve
goals, and it is essential that the therapy
structure takes this pace of progress into account.
SH St Bartholomew's Hospital Chronic Fatigue Services
75 FULL 188 6.3.6.16
These goals should include recovery,
not just exercise and activity goals.
If it takes "years" to achieve goals, then
either the goals are wrong or the
therapy is wrong. What other treatment
in medicine would take years to work?
We suggest "or even years" is deleted.
If a therapy is not helping within a few
months, either the therapy or the
diagnosis or both should be reviewed
and changes considered. We suggest
that this advice is pertinent to all
treatment approaches, not just for GET.
Hi Mark,
Concealing information is a criminal offence under Section 77 of the Freedom of Information Act.
I've complained to the ICO in the past about a public body, alleging that a person had deliberately withheld information from me, and because I was able to make a persuasive case that this had occurred the ICO took my complaint seriously and expedited the appeals process.
I was told by the ICO that the evidential bar for proving such a breach is set very high, and that at the time I complained there had been no successful prosecutions under Section 77.
However, if there is evidence that QMUL wrongly denied having information that was actually in its possession, it's possible that someone has breached Section 77. (As I understand the law, it is the person rather than the institution who would be held to account.)
I sense that given the current climate of QMUL presenting itself as the victim of a dangerous, anti-science rabble, it would be politically risky to claim that someone had broken the law in denying the release of information.
It's a weapon of last resort in my view, but worth considering if compelling evidence exists that an offence has been committed, and all other attempts to obtain the data have been exhausted.
The problem is much deeper and more extreme - they aren't just saying that we can't be trusted. They're saying we're basically a hate group who are prejudiced against people with mental illnesses.
It's on par with calling us racists or misogynists. It implies that we shouldn't just be pitied for distrusting science, we should also be reviled for our hatred and intolerance of a large class of disabled people.
In addition to being an excuse to completely dismiss everything every ME patients says (we'd all have a psych diagnosis if we accepted our supposed psych problems, after all), it opens the door to the sort of abuse which is obviously and shockingly inappropriate for any other patient group.
I think this is why we see a group of socially liberal and otherwise tolerant and enlightened academics being such turds toward us in such a public manner. They don't see their behavior as being similar to that of racists or anti-semitics shouting down those who want to change the discriminatory status quo. Rather they've been taught to see us as the bigots, and they're allowed to deride us to their hearts' content as a result.
They would argue that we're just a subset of people with a psychogenic disorder, or with broader psych disorders. That we're the nasty and extra crazy ones who rejected those diagnostic labels due to our supposed anti-psychiatry bigotry, and that we fought for the ME/CFS label instead of settling for MUS or depression.Why would it be the case? Aren't racists, homophobes or sexists spread out amongst the general ill and healthy population in no particular bias?
Answer from King's College
http://www.kcl.ac.uk/ioppn/news/records/2015/december/release-of-data-from-the-PACE-trial.aspx
Where there was no conflict of interest or anything...We have supplied requested, anonymised data to independent scientists, as part of normal research collaboration. Among others, these include a Cochrane review group who have independently validated the trial findings on the primary outcomes, and who are now undertaking an individual patient data meta-analysis using these data.
http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD011040/fullIntervention Protocol
You have free access to this content
Exercise therapy for chronic fatigue syndrome (individual patient data)
Editorial Group: Cochrane Common Mental Disorders Group
- Lillebeth Larun1,*,
- Jan Odgaard-Jensen2,
- Kjetil G. Brurberg1,
- Trudie Chalder3,
- Marianne Dybwad4,
- Rona E Moss-Morris5,
- Michael Sharpe6,
- Karen Wallman7,
- Alison Wearden8,
- Peter D White9,
- Paul P Glasziou10
Have they redefined the meaning of the word independent now, too?KCL said:We have supplied requested, anonymised data to independent scientists, as part of normal research collaboration. Among others, these include a Cochrane review group who have independently validated the trial findings on the primary outcomes, and who are now undertaking an individual patient data meta-analysis using these data.
Their 'cartel' is pretty extensive. Independant just means outside of King's College and QMUL.Have they redefined the meaning of the word independent now, too?