PAUSE-REVIEW-REFLECT: towards a bigger picture?

Clear and concise.. thank you Valerie for helping so much … rest and enjoy x

valerieeliotsmith

January 2017 - a new world order? January 2017 – looking for the RESET button.

PAUSE

This year will bring some changes which mean I need to step back from my research and advocacy work. This work has covered a number of different topics and this is reflected in the sub-heading of this blog “Law and health; due process and civil society“. However, my main focus has been on issues facing the international community of people who live with the illness myalgic encephalomyelitis (ME) – sometimes also conflated unhelpfully with the condition “chronic fatigue syndrome/CFS”.

I have lived with ME since 1981 (possibly longer) and began to learn about its history and pathology from 1989, when I was first diagnosed. In 2009, I started increasing the scope and range of my research and in 2012 I set up this blog in order to publish my work on the so-called “Secret Files on…

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Karina Hansen 7: Update and Urgent Appeal

And so to getting help.. let’s stop doctors thinking they are able to get away with this kind of treatment.. donate if you can lovelies xxx

valerieeliotsmith

KarinaHansenStockPicRegular readers of this blog will be familiar with Karina’s horrifying story (as detailed in my series of posts) and with the often appalling treatment of ME patients generally.

For new readers, and those needing a reminder, there is a full summary at the end of this post.

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The current situation (December 2016)

On 17 October 2016, after three and a half years of involuntary detention as a de facto psychiatric patient in a Danish clinic, Karina Hansen (pictured above left from her schooldays) finally returned to her family home from which she had been forcibly removed in February 2013.

Karina is very happy to be back at home. She and her family are gradually adjusting to their changed circumstances and trying to process everything that has happened to them. However, it is inevitable that the traumatic events of last few years have taken an enormous toll on…

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Getting about…the least of his worries!

Wonderfully executed… disability isn’t about a set of criteria.. it’s about human beings…

Carole...

http://www.telegraph.co.uk/news/politics/9263502/Iain-Duncan-Smith-Im-not-scared-to-light-the-fuse-on-disability-reform.html

images (3) This article has been playing through my mind overnight.  

Especially these sentences:


“It’s not like incapacity benefit, it’s not a statement of sickness,” Mr Duncan Smith says of the benefit. “It is a gauge of your capability.
“In other words, do you need care, do you need support to get around. Those are the two things that are measured. Not, have you lost a limb?”

“But, can he guarantee that every person in a wheelchair will still get this benefit?
“Yes,” he says firmly before adding: “But, again I can’t jump the gun and say it, but my assumption is yes.”

Now I want to add something to this…

From this I get the impression that they believe being in a wheelchair is all about the ability to ‘get around’ Living with, caring for and speaking for my paraplegic husband I can quite categorically state that ‘getting…

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Alem Matthees: how an Australian’s FOI request busted open a UK science scandal

It’s great to see FOI uncovering the lies ..

ME Australia

by Sasha Nimmo

In September 2016, Queen Mary University of London (QMUL) was compelled to release the data from the 2011 PACE trial, a trial which examined the effect of graded exercise therapy and cognitive behavioural therapy against standard medical care.

West Australian Alem Matthees was one of many people who wanted a closer look at the information from the study.

In March 2014, he filed a UK Freedom of Information Act request for the data, but Queen Mary University of London (QMUL), the institution that sponsored the PACE study, denied his request. On 18 June 2014, Matthees requested an internal review, but QMUL again denied his request. On 15 Dec 2014, he filed a complaint to the Information Commissioner (IC). In October 2015, the IC ruled in Matthees’ favour that the researchers were required to release the anonymised data of the study. QMUL appealed but again lost their appeal in…

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Professor Steven Lubet’s Letter to Simon Wessely.

Breath of fresh air…

Utting-Wolff Spouts

We had to provide a link to this superb letter written to Simon Wessely by Professor Steven Lubet concerning the PACE trial and the former’s enthusiastic support of said study despite its innumerable flaws,

http://www.thefacultylounge.org/2016/11/an-open-letter-to-dr-simon-wessely-defender-of-the-pace-study.html

We particularly like the paragraph,

‘You compare the PACE Trial to an ocean liner plotting a course from Southampton to New York, and express satisfaction that it made the trip “successfully across the Atlantic,” despite course corrections along the way.  But surely you realize that a randomized controlled study is not supposed to have a fixed destination, but rather should follow wherever the evidence – or the current, to maintain the metaphor — leads.  You thus virtually admit that the PACE Trial was always intended to reach a particular result, and that adjustments along the way were necessary to get it there.’ 

Especially pertinent re Wessely as his extreme bias towards the biopsychosocial model of…

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PACE part II? Esther Crawley and FITNET

Cutting through the media spin … great blog as ever…

Utting-Wolff Spouts

In case you missed it, unlikely but kudos if so, today (1 November) has seen considerable media coverage of the proposed FITNET trial[1] (of course the acronym has to include the word ‘fit’) being run by Professor Esther Crawley. Costing £1 million, we yet again see large sums of money being spent on studies promoting the biopsychosocial (BPS) model of the disease rather than decent biomedical research. Crawley’s trial draws on a Dutch study which showed no difference between treatment cohorts at long term follow up[2], though the BBC and their scientifically illiterate journalists imaginatively and dishonestly spun this as a 2/3rd cure rate. Again the laziness and uncritical reporting of any story concerning ME, promoted as usual by the Science Media Centre (SMC), by the UK media is glaring. They even dragged out their old canard, supposed victimisation of the brave researcher (that would be Crawley) by nasty ME activists, said researcher ‘heroically’ carrying on despite abuse from a minority of patients. Such claims were conclusively debunked by the recent First-Tier tribunal…

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Karina Hansen 6: THE HOMECOMING

Amazing news …

valerieeliotsmith

KarinaHansenStockPicKARINA HANSEN, “PRISONER OF DENMARK”, IS HOME AT LAST.

On Monday 17 October 2016, after three and a half years of incarceration, Karina finally returned home to her family. The arrangement was on a trial basis but in the hope and expectation that she would be finally and permanently back where she belongs.

In recent weeks, Karina’s condition had improved slightly and her parents were able to visit her on a regular basis (more detail in my previous post). As a result, meetings took place between those in charge of the Clinic at Hammel where she had been an inmate since February 2013 (see Karina’s Story below for background) and representatives of Karina’s family. An arrangement for Karina’s return home was agreed whereby her parents would take her home within the next few days and she would remain there for a trial period. If all went well…

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