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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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The FINE Trial. BMJ ARTICLE. Nurse led, home based self help treatment for patients in primary care

Discussion in 'Latest ME/CFS Research' started by pollycbr125, Apr 23, 2010.

  1. oceanblue

    oceanblue Senior Member

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    Good letter, Tom. And it's weird that the paper itself mentions the London Criteria early on - then fails to report how the London Criteria patients performed.
     
  2. Dolphin

    Dolphin Senior Member

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    Thanks oceanblue. I was a bit lazy and didn't write it in a tight manner - I'm not going for a letter that will be published, just putting it on the record that some things are missing (like not reporting how those with ME (London criteria) fared).
     
  3. oceanblue

    oceanblue Senior Member

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    Most of the advice was focused on balance and not going beyond limits. So there was a lot about getting a good mix of mental activity, physical activity and rest (ideally relaxation) throughout the day. And a lot about how to break up large activities into manageable smaller chunks to reduce the risk of overdoing things. It's also about not going wild on a good day, again to keep things in balance. Doing things this way I was able to increase my total activity levels quite a bit in a short time. We did also look at things I couldn't do now but would like to e.g. a short trip out somewhere. The approach again was to break things down into smaller chunks e.g. just making part of the journey at first, then coming back. The idea was to gradually increase activity towards the goal if possible. Sometimes it was possible, in other areas it wasn't. there was no timescale, no pressure and I was in charge. The advice from the therapist helped me maximise what I could do within my limits, and ultimately increase my limits is some areas. But it was no miracle cure, and didn't claim to be one either - just a helpful approach.

    I saw the Magical medicine highlights, thanks. Should we continue that discussion in the PACE or Magical medicine threads? I'm new to this, and don't know how to do that.
     
  4. Dolphin

    Dolphin Senior Member

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    BMJ Rapid Response: A valedictory dispatch from the Psychosocial School?

    I don't know if this person is a member of PR, but well done to them anyway.

     
  5. Jerry S

    Jerry S Senior Member

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    Good letter, Mr Carter!
     
  6. V99

    V99 *****

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    Very good letter. Doesn't just say the method doesn't work, also addresses how the assessment measures are not fit for purpose.
     
  7. Sam Carter

    Sam Carter Guest

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    Thanks, folks! (*blushes*)

    I tried to follow the example of TomK's (many) excellent letters and focus on methodological and statistical issues.

    The UK psychosocial school are so wedded to their beliefs that they have become "blind" to any empirical data that does not accord with their own patho-aetiological theory. If the results of a study are at variance with their "model" of ME/CFS they don't question the model, they question the validity of the study.

    To quote the physicist Wolfgang Pauli, they are "not even wrong."
     
  8. Dolphin

    Dolphin Senior Member

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    Thanks Sam.
    I find it hard to keep track of names now so don't know if you've made comments on papers before but hope you will in the future.

    And welcome to Phoenix Rising!

    P.S. I posted it to a couple of yahoogroups and I see that somebody posted it to Co-Cure http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1005A&L=CO-CURE&P=R5897&I=-3&X=50C9907C60EA6661E4 with the heading, "[CO-CURE] NOT:Very good BMJ rapid response to the FINE Trial Paper".
    Co-Cure is probably the place for ME/CFS news (Phoenix Rising may be better in a way but is much higher volume).
     
  9. Dolphin

    Dolphin Senior Member

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    (Not important)
    AfME pay for a media monitoring service.
    So these were presumably in the print edition.

    http://www.afme.org.uk/news.asp?newsid=828
     
  10. PoetInSF

    PoetInSF Senior Member

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    Note that FINE was a trial for a delivery vehicle of CBT/GET, not CBT/GET itself. The failure of FINE does not provide impetus for dropping CBT/GET as it does not say anything about CBT/GET. PACE, on the other hand, is a trial of CBT/GET itself along with adaptive pacing. The failure of PACE, if that happens, will forcethe policy makers to at least reconsider CBT/GET as it is an extensive study and therefore carry a heavy weight.
     
  11. fds66

    fds66 Senior Member

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    Just found this reponse from AFME on their news section of the website (my bold and added some extra spaces)

    http://www.afme.org.uk/news.asp?newsid=822

     
  12. ukxmrv

    ukxmrv Senior Member

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    And the infrastructure may be a reference to their support of the tissue bank for research
     
  13. bananaman

    bananaman

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    That is a bit rich of AfME they backed and gave their full support to both the FINE & PACE Trials in the first place!!
     
  14. Bob

    Bob

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    Which is why the FINE trial was allowed, or designed, to fail... The PACE trial won't fail... we can all be absolutely sure of that!
     
  15. Min

    Min Senior Member

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    They do seem to speak with forked tongues - they had a page on their website listing the reasons for their support of these expensive flim flam trials, but the page has now been removed.
     
  16. Bob

    Bob

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    So the subjective experience of fatigue had 'significantly' (but actually, only slightly) improved in patients at 20 weeks, but the objectively tested physical functioning hadn't (i.e. there was absolutely no improvement in physical ability after all of that million pound 'therapy' to reduce "learned illness beliefs")...

    If they can't learn from this that ME is a real, physical, non-psychological illness, then they never will!
     
  17. Dolphin

    Dolphin Senior Member

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    Technically, they didn't report any objective testing of physical functioning. What they reported was the results of a questionnaire. The results from the step test were never reported as I mentioned in my rapid response.
     
  18. Bob

    Bob

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    Thanks tomk... sorry, i hadn't got round to reading your rapid response... (I've read it now)...
    So, do we assume that the results from the objective step test were even worse than the self-reported physical functioning?
    And do we assume that the results for the non-oxford diagnosed patients were even worse then the overall results?
    (I'm assuming that they have tried to put the best gloss on the results as possible, so they can avoid total ridicule and embarrassment.)

    Basically the trial was a catastrophic failure, but they are only giving us selective results, and not all of the results... they appear to be covering up the worst results.
     
  19. Dolphin

    Dolphin Senior Member

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    No problem - it's not very exciting - it's here if anyone wants it: http://www.bmj.com/cgi/eletters/340/apr22_3/c1777#235156
    I didn't want to say that in case they have some other evidence. I think the evidence is bad enough with this trial - they said in the original paper on the protocol that the primary outcome point would be at 70 weeks and there's no difference from the control group at that point for the five measures.
     
  20. Bob

    Bob

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    Well, maybe it's not very 'exciting', but it's very useful, so thanku. (I've read it now.)

    Yes, at 70 weeks, all measures show no improvement in the patients...
    But it would be extremely valuable for our community if we had the stats for the different patient cohorts (patients diagnosed using different diagnostic criteria).
    If 'pragmatic rehabilitation' (in other words: CBT/GET) was shown to make patients with a CDC diagnosis worse, in a one-million-pound medical trial, then this would be a very useful weapon against the psychological establishment for us.
     

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