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Looking for ellusive publication papers and need help please

Discussion in 'Advocacy Projects' started by Flash of Hope, Aug 31, 2016.

  1. Flash of Hope

    Flash of Hope

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    I'm currently writing to my government officials and I'm looking two more papers I simply can't locate. These papers are from around 2004-2012 and describes how CBT and GET affects patients in practical clinical setting, not in research. There is some economical thinking done too.

    I have found one of them from Dutch:
    Chronisch Vermoeidheidssyndroom: diagnose, behandeling en zorgorganisatie, KCE reports 88A
    Federaal Kenniscentrum voor de Gezondheidszorg
    Centre fédéral d’expertise des soins de santé
    2008

    Report itself is in English. My Dutch isn't so great (nonexistent), but Google will translate this heading to "Chronic fatigue syndrome: diagnosis, treatment and care organization"

    To my and friend of mine's recollection is that there should be two more like this, one more from Dutch and second from some other European country.

    Any search term or anything to help locate these other papers would help a lot and is much appreciated, thanks!

    Thank you for our time and help!
     
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  2. Effi

    Effi Senior Member

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    @Flash of Hope The Google translation of the Belgian study you mention is correct.

    As for the Dutch study: could it be this one from 2008? http://www.nivel.nl/sites/default/files/bestanden/Rapport-draagvlakmeting-CVS-ME-2008.pdf?
    One other thing I recall is a big patient survey from the UK. http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res4.pdf
    There's of course a few actual research papers too, but that's not what you were looking for, right?
     
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  3. Andrew

    Andrew Senior Member

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  4. Flash of Hope

    Flash of Hope

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    Thank you for your replies Effi and Andrew. I will look at those when I feel up to. I'm currently half blind to text as something is messing my brain. Not so fun.

    If you have research papers at hand, doesn't hurt to put them here. I will look at them too.

    From the study I linked I got this:
    Employment status decreased at the end of the therapy, from an average of 18.3% of a 38h- working week, to 14.9% ... The percentage of patients living from a sickness allowance increased slightly from 54 to 57%. ​

    This looks so beneficial to my country as we wouldn't make enough debt already :confused:
     
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  5. Effi

    Effi Senior Member

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  6. Effi

    Effi Senior Member

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  7. Flash of Hope

    Flash of Hope

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    Thanks a lot!

    From your posts and links I have so far grabbed these:
    That Twisk - Maes one I already had. And of course IOM Beyond ME/CFS and AHRQ
    Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
    + lots of others.

    I will look that Danish paper later when I'm up to. It might be better to stick older ones for the most part, as then I can show that there was enough evidence back when decisions where made. So our officials decisions back then where wrongly based. But I'm not lawyer.
     
  8. Effi

    Effi Senior Member

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    I would strongly advise against this paper. It is from some of the worst BPSers from Holland. Using this kind of paper will undermine your case IMO.

    You are still using the Belgian one from Federaal Kenniscentrum, right? That's a very good one, from a very solid and respected independent organisation.
     
  9. Valentijn

    Valentijn Senior Member

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    Actually it's an excellent one for ME patients, despite the researchers spinning the hell out of it. It shows that self-reports of fatigue don't result in any increase in actual physical activity measured by actometers.
     
    Last edited: Sep 2, 2016
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  10. Effi

    Effi Senior Member

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    True, but you'd have to be sure that your audience sees it that way too...
     
  11. Flash of Hope

    Flash of Hope

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    I will explain the results in text. Like: "After CBT people will report they are better off, but there is no objective indication of increased activity" :D. There so much citations already >50. This one is currently in order 14th. If by chance they just home on this one, they might start thinking why it looks like it doesn't fit the bill.

    I'm using Belgian one too, its golden. It shows how science babble translates to practice and really helps people :rolleyes:
     
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  12. JaimeS

    JaimeS Senior Member

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    Which study was this from? And did it refer to CBT, GET, or both?

    -J
     
  13. Flash of Hope

    Flash of Hope

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  14. JaimeS

    JaimeS Senior Member

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    Thanks, @Flash of Hope -- do you remember if this was about CBT or GET or both?
     
  15. Flash of Hope

    Flash of Hope

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    I tried to put it here
    "If I recall they refer both, but better check, my memory..."

    If you need definitive answer and this difference is important, better check from the article or search from the PR. If you do this, put it to this thread too please. I got around this by being bit vague of my reference ;)

    If my fuzzy opinion is suffice, then I say both, but its bit hard to get it from article what they really did. I'm not sure they had really definitive structure like X CBT and Y GET as this wasn't trial but treatment. To me, more important fact is that it was money well spend :whistle:
     

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