Thank you Hilda Bastien for engaging so thoroughly in this process and talking to patients here.
Last night I went to sleep dreaming I was in a Grisham courtroom drama. We have a trial "the evidence" and a jury needs to be selected. In true Grisham style we get the story of how important it is to pick the right jury and how trading and shenanigans (favourite forum word) go on behind the scenes to ensure that the right duty is selected for whatever outcome is desired by both sides.
Cochrane have gone one better by engaging you, Hilda as the "front". A champion of a certain style of consumer rights and a formidable person with lots of guts and experience. Hilda, I would like to suggest that maybe it is this old fashioned style of consumer rights dispute / evidence analysis that could potentially be the problem here. I could be wrong. However, I think it needs to be mentioned as a possibility.
We have seen a succession of Inquiries here in the UK into a range of different concerns where evidence needs to be heard and assessed. The pattern is for the first Inquiry to be controlled by the Establishment and to return a verdict that leaves people injured or affected unhappy. Then over time the Inquires become more and more focussed on the rights and the interests of the people affected as the original establishment is allowed to retire, die to disappear.
With Cochrane we are at the first stage here.
Cochrane have bought the type of court the case will be held in (the use the Grisham court room analogy), they selected someone with a firm view of how it should be done (which appears to be outmoded and wrong at least to UK sensibilities) and the jury is stacked with the wrong people.
It's no longer acceptable in England for people affected to be labelled as "activists" and for their input to be disregarded for that reason. It's recognised that unless patient interests are not being heard and addressed the problem doesn't go away. It is recognised that people affected by an issue deserve to be heard. It's no longer acceptable to put a group of people together with patient representatives that don't reflect the views and an understanding of the issues that brought this Inquiry together. It is recognised that it is normal for anyone severely affected by an issue to be informed and to speak out.
A brief look at Kay's internet presence should have raised some red flags that said wrong person and deeply "Establishment"
https://civilservice.blog.gov.uk/2019/05/03/personal-disability-stories-10-kays-story/
1. In this part she speaks about her experience of being mildly affected and exercise "Some types of exercise can be detrimental if not done the right way – I am, by necessity, more yoga than parkrun!"
The pro GET lobby use the same language. It's "exercise" not done in the "right way". Wrong person.
2. Here she says "I have always had exceptional support through Defence Medical Services.".
So what is this exceptional support on offer that the rest of us can only dream about. A ME patient would want to know. Are they truly "exceptional" offering things that are different to the original NICE Guideline and is so, why don't we know about them and have access to them.
The answer is of course that it's the same crap the rest of us are getting with more employer type support. If she is happy with her medical care then she will not understand the battle with NICE and with Cochrane that the rest of us are fighting. Wrong person.
3. She makes non-evidence based attributes to her own health problems here "Initially, I reacted physically to the increased cortisol levels firing round my body, and I ended up in an early menopause, aged 41."
We have had threads on the forum that look at the claims for cortisol and what evidence there is. Kay has obviously not seen these threads or read any medical papers on the topic. It's pure behavioural BS i.e. stress = physical problem.
Who told her this and why does she believe them? Wrong person.
4. I've also had a look through her Twitter feed and seen "likes" for particular views that are controversial areas for people with ME and pain. Personally I would not have "liked" them and I would have recognised where they come from. Wrong person.
Hilda, you should have seen all of this and recognised it.
It's looks like a disaster and deeply unprofessional, patronising and well out of date with attitudes and methods.