Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Does Esther Crawley’s latest research really tell us anything about prevalence of pediatric CFS/ME

Discussion in 'General ME/CFS News' started by Dolphin, Feb 3, 2016.

  1. Dolphin

    Dolphin Senior Member

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  2. worldbackwards

    worldbackwards A unique snowflake

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    Well, there's a topic that can be reduced to a single two letter word.
     
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  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    I'm gonna presume that's a rhetorical question.

    I do think it tells us something about the researcher and her disdain for sick people.
     
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  4. halcyon

    halcyon Senior Member

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    It's very telling that she thinks this disease can be reduced to the level of self (or parent) reported fatigue. Given how complex we now know this disease is (and lacking a biomarker), we are far past the day where it's appropriate to publish epidemiological studies that don't involve diagnosis by disease experts. I'm still floored by the fact that this research was published.
     
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  5. jimells

    jimells Senior Member

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    I'm amazed they continue to publish such obvious rubbish instead of quietly backing away from a dead hypothesis. The psychobabblers are going for double or nothing.
     
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  6. jimells

    jimells Senior Member

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    We'd all be better off to take the money and pay the psychobabblers to retire and shut the hell up, so real researchers could get on with it in peace.
     
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  7. Daisymay

    Daisymay Senior Member

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    And Crawley's "research" also shows the absurdity of the UK Collaborative, how on earth could any bonafide researcher "collaborate" with Dr Crawley? They can't speak out against her work but they could and should walk out.
     
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  8. Sean

    Sean Senior Member

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    Yeah, crunch time is coming for the UK Collaborative. Difficult to see how they can retain credibility with Crawley on the board and continuing to do and publish this rubbish.

    She has to go.
     
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  9. Art Vandelay

    Art Vandelay Senior Member

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    Nope. However it does tell us that creepy Crawley is lobbying for more money from the taxpayer to fund her empire.
     
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  10. taniaaust1

    taniaaust1

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    maybe she wants knighthood too.. (does she want to follow in Wesselly shoes).
     
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  11. taniaaust1

    taniaaust1

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    that's the thing.. we all know governments do not want money spent on our illness.. so this could be said to be part of a conspiratory to legally have money which is said to have got to CFS go to researching depression. (was her study gov funded?).

    In America years ago, the CDC spent CFS funding on other things as they just didn't want it going to CFS.. and here we have Crawley, funded openly to be able to do same kind of thing and what is worst, its out in the public and she's getting away with doing it.

    We are going downhill with things.. her further study with mostly children with depression rather then CFS.. will be used to prove psych methods work on CFS. Is there no way she can be stopped? If she gets away with this, she's going to get away with further studies which may greatly show psych treatments are helpful and then those studies wil be used to support other bad studies that were done.

    This is a rolling snowball.
     
  12. sarah darwins

    sarah darwins I told you I was ill

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    I suppose it wouldn't matter so much that it was published if not for the corporate-grade spin machine that promoted it.

    Over the course of a few days, this Crawley production was in most British newspapers, on the BBC website (including its children's service), featured heavily in one of the BBC's flagship radio programmes etc etc. It was everywhere.

    The SMC was obviously promoting the hell out of it, and the BBC, which attends every single SMC 'event' like some kind of groupie, faithfully reported it as though it was the stuff of Nobel prizes.
     
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  13. soti

    soti

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    Is there a BBC ombudsman or investigative program we could lean on? I mean, it's a pretty juicy story.
     
  14. sarah darwins

    sarah darwins I told you I was ill

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    It's a good idea. There's no ombudsman (though former director general Lord Grade has said there should be). I think you have to complain to the BBC itself first, and if you feel dissatisfied with the response you can elevate the complaint to the BBC Trust - http://www.bbc.co.uk/bbctrust/contact_us/making_a_complaint.html

    There's definitely an issue with the cosy relationship between BBC news and the SMC that's probably not helped by their physical proximity. The SMC slum it in Mayfair while most BBC broadcasters still seem to be based in up the road in Marylebone. No doubt many a 'working' lunch gets shared. Interesting, too, that a guy from the BBC College of Journalism sits on the SMC's board of trustees (but then a communications exec from GlaxoSmithKline sits on its advisory board, so nothing should surprise us).
     
    Last edited: Feb 4, 2016
  15. Chrisb

    Chrisb Senior Member

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    I wonder what the argument would be. That they are in some way in breach of the charter? Failure to comply with proper journalistic standards in blindly and unquestioningly accepting information from a single source without providing proper balance?

    I wouldn't get hopes too high. The BBC is only the propaganda arm of government when it chooses to be-though I'm sure there are people working there who wish it were not so. Remember what happened to the last DG who trod on government toes.
     
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  16. sarah darwins

    sarah darwins I told you I was ill

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    Sadly, I think you're right. It's hard to see what form a complaint would take. The BBC has done nothing 'wrong' - they've just reported a published paper by a professor and 'expert' on CFS. heavy sigh. ...
     
  17. alex3619

    alex3619 Senior Member

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    Of course it does. It tells us they have failed to do adequate research into the prevalence of CFS/ME in 16 year olds. I sense a pattern, again. This is at best a pilot study to give some indication that funding for adequate research is warranted. At worst its a total waste of time and resources.
     
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  18. Gijs

    Gijs Senior Member

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  19. K22

    K22

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    I think from Crawleys own perspective it gives a nice platform for her own work on fatigue in kids with a slight emphasis for further study on adverse life events & mood. As the blog says for Crawley its if the fatigue is really disabling which distinguishes for Her "CFS" from other fatigue. That's not a common way to define CFS, unfortunately Crawley herself calls that ME too.

    I think the criteria for the upcoming MAGENTA trial - who is funding that? - needs careful watch.

    From a CFS or ME perspective it doesn't really tell us anything and highlights the issue with the MRC Still funding poor "CFS" research & not recognising tighter definitions for these illnesses which, like the psychiatrists they probably feel are too restrictive for the broader fatigue research, possibly applicable across other illness, that they seem to be interested in. It's pretty tough for those of us meeting ME criteria to swallow this type of research taking supposed CFS/ME research funds whilst many aspects of vital ME biomedical research still Not getting explored.
     
    Last edited: Feb 4, 2016
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  20. ukxmrv

    ukxmrv Senior Member

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    It's been tried but no interest so far. Some TV "investigative" programs simply cannot be trusted i.e. the Panorama program on the GOS Hospital

    p.s. just thought of this. There was one local BBC news program that did good coverage of ME issues (not PACE so far). It might be "Look East". Not sure if they were covered. Plus SKY did an interview with a anti-PACE patient when one of their papers was released.
     
    Last edited: Feb 4, 2016
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