The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

"Medically Unexplained Symptoms" - Diverting 5-Year Funding from Mental Health

Discussion in 'Other Health News and Research' started by MEMum, Jul 4, 2017.

  1. MEMum

    MEMum Senior Member

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  2. SamanthaJ

    SamanthaJ Senior Member

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    Great article.
     
  3. Luther Blissett

    Luther Blissett Senior Member

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    A great article, and may be just the kind of thing to send to commisioners.

    She's done well to condense the main arguments into such few words I think.
     
  4. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Makes you wonder whether the commissioners reviewing this report will show as much drive and professionalism as was seen in the European Parliament today?

    Can just imagine a stuffy room full of empty seats with just the chairman reading it out to the minute taker and waving it through as approved.

    Of course they could do their job and challenge the content? Here's hoping.
     
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  5. Hutan

    Hutan Senior Member

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    It is a very good article. Does anyone have more information on this statement from it?

    Can this be verified? So this is saying that all participants in the trial who were not working at the beginning of the trial were still not working by the end of it? Was the raw data on employment ever released?

    If true, surely it is a major blow to the whole MUS treatment approach?
     
  6. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    She's written a lot of good articles plus two books:
    http://www.positivehealth.com/author/nancy-blake
     
  7. trishrhymes

    trishrhymes Senior Member

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    A good article, but it seems to be published on a complementary medicine website which may lower it's credibility in the medical and political worlds. And she's a promoter of NLP which I know almost nothing about except it has dubious credibility.

    Does anyone know more?
     
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  8. Invisible Woman

    Invisible Woman Senior Member

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    I have read this before - I'm trying to remember where. If memory serves figures for unemployment were slightly worse at the end of the trial while benefit claims / reliance were the same or slightly increased.

    I'll see if I can remember where I read it.....don't hold your breath mind! :)
     
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  9. Invisible Woman

    Invisible Woman Senior Member

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    In fact, I remember this was raised somewhere and the response from one of the PACE PIs, possibly P White, was that it wasn't their fault that the economy wasn't great/suitable employment couldn't be found, or some such fact dodging, self serving excuse.

    Yeah - it's not that these bbedridden/housebound, cognitively impaired folk who can barely (if they're lucky) manage personal care aren't fit for work. It's that suitable work isn't available. :rolleyes::depressed::mad:
     
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  10. NelliePledge

    NelliePledge plodder

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    i think this is pretty good and am going to post it on the other online places I use where people arent anything like as well informed as PR folks
     
  11. alex3619

    alex3619 Senior Member

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    I do not recall reading anything, but my memory is mush, that proves that nobody returned to work. Its more that in total there was not an improvement in employment, but I could not swear that nobody fit that description. If one person did get into work, and three dropped out of work, for example, the average would be worse but there would indeed be one who returned to work. It would be more desirable to say, instead, that given that the numbers show no improvement in employment its possible that nobody in the study returned to employment.

    Arguing that the economy was to blame is taking people for fools. Sure, of all those "recovered" many might not have been able to find work, but all of them, or even most of them? Its very unlikely. Again, this is persuasive rhetoric instead of evidence and reason. Its a lot like "the dog ate my homework".

    Of course if nobody or nearly none of them really recovered then its no surprise there was no improvement in employment. The recovery threshold was, after all, in the range of the typical 80 year old based on SF36PF.
     
    Last edited: Jul 5, 2017
  12. Jo Best

    Jo Best Senior Member

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    Hi Trish, in reply to someone else making this point on Facebook, Nancy Blake replied:

    "The Editor of Positive Health has been kind enough to provide me with a platform for publication even though I'm neither a PhD or an MD. So I do what I can!!"

    I don't know about NLP as a form of psychotherapy in mental health, but from what I know of Nancy Blake through Facebook groups, her knowledge of ME as a disease and the political issues, is sound and well expressed.

    These are her books on Amazon:
    https://www.amazon.co.uk/Nancy-Blake-BA-CQSW/e/B0089NS0RK/ref=ntt_dp_epwbk_0

    Here is a guest editorial, 'A Radical Care Pathway for ME/CFS' on NHS Managers Network:
    http://www.nhsmanagers.net/guest-editorials/a-radical-care-pathway-for-mecfs/
    (think the date of the above is Oct. 2013 but not certain)
     
  13. Invisible Woman

    Invisible Woman Senior Member

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    I found this:
    "Information on overall receipt of state sickness or disability benefits failed to support a recovery – with the PACE trial cost analysis study (McCrone et al., 2012) reporting: ‘Receipt of benefits due to illness or disability increased slightly from baseline to follow-up’.

    Information on return to some form of meaningful employment or education status was never sought. This was dismissed by the investigators as not being relevant."

    Written by @charles shepherd about half way down:
    http://www.meassociation.org.uk/201...d-journal-of-health-psychology-10-april-2017/

    I reckon I've seen something elsewhere though...
     
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  14. Jo Best

    Jo Best Senior Member

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    Was it here maybe, 23 OCTOBER 2015: http://www.virology.ws/2015/10/23/trial-by-error-iii/
     
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  15. Invisible Woman

    Invisible Woman Senior Member

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    I think that's probably the one. Thanks @Jo Best! :thumbsup:
     
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  16. Dolphin

    Dolphin Senior Member

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    Unfortunately we do not have individual-level data so we can't say that everyone who was not employed at the start of the trial was also not employed at the end.
     
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  17. Griffin

    Griffin

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    Excellent article. Though I struggled to read it all, but that's down to ME!

    I thought the original outcome for PACE was going to be measured on return to employment, but that was dropped when they changed the protocol. On this point, it's worth remembering the DWP put £5 mill. into the trial and an interest in the outcome.
     
    Last edited: Jul 12, 2017
  18. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    Arguing that the economy was to blame is speculating on new assessment criteria not declared at the beginning of the trial. Oh, damn that always happens...
     
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  19. Dolphin

    Dolphin Senior Member

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    I don't recall anything along the lines of what you are saying.

    The employment data and information on disability payments and similar was published:
    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808
     
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  20. Griffin

    Griffin

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    I can see the article talks about lost employment. But I was talking about the PACE trial itself.

    ME Association
    It’s time for an independent review of the PACE Trial methods and results’ | Dr Charles Shepherd, Journal of Health Psychology | 10 April 2017


    Bit of a tangent to the discussion. Foggy Brain!

    The article's results and conclusion talk about reduced healthcare costs but not employment.

    Table 2 shows number of days Lost Employment at pre-trial and 12 month follow up. This is not the same as return to employment.
     
    Last edited: Jul 14, 2017

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