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

KARINA 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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Karina Hansen 5: A little progress?

Thank you for the update Valerie … still an appalling system that treats a very sick patient in this way ..

valerieeliotsmith

Regular readers of this blog will be familiar with Karina’s horrifying story. This update follows on from my series of posts, the most recent of which, Karina Hansen 4: Timeline, Torture and Tragedy, contains more detailed information. For the full history of the case, see Karina Hansen 2: the Ghost in the Room. For new readers, and those needing a reminder of events leading up to this point, this is a summary:

Brief re-cap 

Karina (pictured above left) lives in Denmark. In 2008, she was diagnosed with severe Myalgic Encephalomyelitis (ME). The diagnosis was disputed and in February 2013, then aged 24, she was forcibly removed from home, where her family had been caring for her. She was taken to Hammel Neurocenter (part of “The Research Clinic for Functional Disorders” at Aarhus University Hospital).

Several doctors have been involved in her case but psychiatrists Nils Balle Christensen and

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And now for something Completely Different…

I so needed that Laugh Out Loud moment… Thanks Peter x

peterkempblog

It’s…
If they did Medical Research

“…approved by the trial steering committee and the data monitoring and ethics committee…”

Damn these vexatious FOI’s.  We didn’t expect a Spanish Inquisition…

Objective Measures give confidence:

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PACE Trial Participants – were they exploited?

Everything about PACE is untenable … Thank you peter

peterkempblog

Analysis and opinion by Peter Kemp MA

September 2016
[Emphases throughout are added]
This article follows-on from my Blog:

The PACE Trial ‘Normal Range’ – an Untenable Construct
https://wordpress.com/post/peterkempblog.wordpress.com/10

which analysed the PACE Trial authors’ justifications for discarding the Protocol Primary Outcome Measures and use of ‘Normal Range’ as a measure of efficacy for treatments.

 As a reminder, here is how ‘Normal Range’ compares with the Primary Outcome Measures which the PACE Trial authors’ discarded.  The chart is adapted directly from one published in The Lancet, with the addition of orange lines showing outcome thresholds. 

 And below is a table illustrating various interpretations of the ‘Normal Range’ SF36PF (Short Form 36 Physical Function subscale) threshold, showing that it is clinically meaningless, even to those that designed and employed it.

(White was the PACE Trial chief investigator, Bleijenberg and Knoop published a comment on the PACE Trial accompanying the PACE report…

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TRIBUNAL ORDERS RELEASE OF PACE TRIAL DATA (QMUL v the IC and Matthees)

Good news in the ME world ..

valerieeliotsmith

The First-Tier Tribunal judgment in this case has just been published. QMUL’s appeal has been roundly dismissed and therefore the Tribunal has decided that the requested data from the PACE trial should be released.

I have just skimmed the 48 pages of the judgment and so have only taken in a small amount so far. However, it appears that this is a defining moment for the international ME community and the PACE Trial. Alem Matthees (the original requestor of the data) has done an extraordinary job.

However, it is important to remember that, in theory,  QMUL could still seek leave to appeal against this judgment to the Upper Tribunal so it will be a bit longer before we can be absolutely certain that this judgment will stand.

I will write a longer post with a more detailed analysis in due course (health permitting).

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Background note for new readers

In

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The Age of Ignorance.

Great blog as every….

Utting-Wolff Spouts

This was a difficult post to write as I was unsure whether or not to ignore such ignorant writing concerning ME, depriving it of the oxygen of publicity, or to confront the idiocy. Such is the level of scientific illiteracy displayed in the book, ‘Exhaustion, A History’ by Anna Katharina Schaffner, I felt I had no choice but to adopt the latter option. Schaffner is another supporter of the BPS model and, given the number of times they are mentioned, a keen admirer of both Sir Simon Wessely and professor Edward Shorter. Concerning the title, I’m not sure about the age of exhaustion but given such books are able to be published and that a large proportion of US citizens believe Donald Trump is a viable presidential candidate, I believe the age of ignorance would be a more accurate description. Reading through her monograph it is notable how often tenuous…

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QMUL v IC + Matthees (PACE Trial) Part 2: Documents, Open Justice and Open Data

Thank you so much for this Valerie x

valerieeliotsmith

NOTE: the judgment in this case is due any time now. This post provides a short case history and details of more documents made publicly available by the Tribunal.

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This post follows on from my previous posts QMUL v the Information Commissioner + Matthees (PACE Trial) Part 1 and  QMUL’s upcoming appeal against the Information Commissioner’s decision on release of PACE trial data. For a full explanation to the background and history of this case, please see my more detailed post from November 2015 Queen Mary University of London to appeal Information Commissioner’s decision on disclosure of PACE Trial data. 

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Case history and background

In March 2014, Mr Matthees sought some of the data from the controversial PACE trial, using the process set out in the English Freedom of Information Act (FOIA). This information is held by relevant public authority, Queen Mary University…

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QMUL v the Information Commissioner and Matthees: Tribunal hearing and Open Justice – Part 1

valerieeliotsmith

This post follows on from my previous short post QMUL’s upcoming appeal against the Information Commissioner’s decision on release of PACE trial data: 20 April 2016. For a full explanation to the background and history of this case, please see my more detailed post from November 2015 Queen Mary University of London to appeal Information Commissioner’s decision on disclosure of PACE Trial data. 

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Brief re-cap

In March 2014, Mr Matthees – the original requestor (OR) – sought some of the data from the controversial PACE trial, using the process set out in the English Freedom of Information Act (FOIA). This information is held by the relevant public authority, Queen Mary University of London (QMUL). QMUL refused to disclose the data.

In due course, the OR complained to the Information Commissioner (IC) who, in October 2015, ordered that the information be disclosed. QMUL appealed against the IC’s decision…

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Karina Hansen 4: Timeline, Torture and Tragedy

valerieeliotsmith

BREAKING NEWS

It was confirmed yesterday that Danish High Court Attorney Cristina Poblador from Homann law firm in Copenhagen has agreed to take this case. This is wonderful news and hopefully will begin to change the narrative of this tragic story. 

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This post follows on from my previous posts Karina Hansen 3: Update March 2016  (KH3) and Karina Hansen 2: the Ghost in the Room (KH2). For the full background to this story, please refer to KH2.

A brief re-cap 

Karina (pictured left) lives in Denmark. In 2008, she was diagnosed with severe Myalgic Encephalomyelitis (ME). The diagnosis was disputed and in February 2013, then aged 24, she was forcibly removed from home, where her family had been caring for her. She was taken to Hammel Neurocenter (part of “The Research Clinic for Functional Disorders” at Aarhus University Hospital).

Several doctors have…

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