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(UK) "Frenchay to lead 250,000 study into the effects of early intervention for ME"

Discussion in 'General ME/CFS News' started by Dolphin, Dec 17, 2011.

  1. Esther12

    Esther12 Senior Member

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    Following on from @Sonya Chowdhury talking about Action for ME supporting research into 'prevention', I waws looking into relevant trials, and found a report of this trial, and then found this thread:

    http://www.controlled-trials.com/ISRCTN72645894

    Link in initial post is now down, but content is here:
    http://www.nbt.nhs.uk/news-media/la...d-£250000-study-effects-early-intervention-me

    Am I missing something, or is this a trial with no control group?

    What does this really mean:

    It looks like they're trying to come up with something even more worthless than this one:

    http://forums.phoenixrising.me/inde...o-educational-intervention-to-aid-reco.13326/
     
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  2. Valentijn

    Valentijn Activity Level: 3

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    It also looks like an Oxford fatigue trial, not an ME/CFS trial.

    Even the moron clinical psychologist running the centre keeps calling it "chronic fatigue".

    Please tell me that no ME/CFS charities are involved :vomit:
     
    Min likes this.
  3. Firestormm

    Firestormm Guest

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    Sorry, confused. Has this one now been concluded then? If so what were the results? Thanks :)
     
  4. Dolphin

    Dolphin Senior Member

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    A real mixture of people will be in this I imagine.
     
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  5. Esther12

    Esther12 Senior Member

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  6. biophile

    biophile Places I'd rather be.

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    But according to the (post-hoc altered protocol of the) PACE Trial, a score of 5 is indicative of a full recovery!
     
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  7. Esther12

    Esther12 Senior Member

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    Sure - but if they exclude recovered people it's going to be a lot less fun for them to get tell the press how many people were recovered after treatment.
     
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  8. Esther12

    Esther12 Senior Member

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    Here's their earlier RCT:

    http://www.ncbi.nlm.nih.gov/pubmed/17014748

    Abstract sounds a little suspicious to me...

    140 page full paper can be dug into if anyone fancies it!

    http://www.journalslibrary.nihr.ac.uk/__data/assets/pdf_file/0008/64979/FullReport-hta10370.pdf
     
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  9. Tom Kindlon

    Tom Kindlon Senior Member

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    I'd a letter published that discussed that paper a little:

    http://www.iacfsme.org/Portals/0/pdf/Kindlon Letter - vol17 n3.pdf

     
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  10. alex3619

    alex3619 Senior Member

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    I too started as a milder patient but was always wanting to do more, and was encouraged by many to do so, including many docs. Now I qualify as severe under the ICC.

    Tired? Here is my answer to tired! Does being tired cause you to fall down stairs? Has your heart ever stopped? Ever you ever been in so much muscle pain you wanted to scream? How does tired prevent you from walking at more than a slow shuffle at best, for months at a time? How does tired shut down metabolism in your brain? How does tired stop you from reading or speaking? Tell me how tired causes those, because I have experienced all of them.

    The falling down stairs and heart issue were from OI, but its part of ME as I currently judge it.
     
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  11. Esther12

    Esther12 Senior Member

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    Thanks Tom. Looks like you'd already done some digging!

    I'd actually read that comment of yours today... then forgot about it when reading the abstract to this study. Oh-oh - not a good sign for my own cognitive function.
     
    Last edited: Dec 19, 2013
  12. Sean

    Sean Senior Member

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    I look forward to enjoying robust good health in my late 90s.
     
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  13. Leopardtail

    Leopardtail Senior Member

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    There is one VERY obvious flaw in this study design. It uses only the form of therapy that is most widely found to (often) be found harmful or ineffective. It should be done with the forms of therapy that patient questionnaires have found to be most effective. Should it disprove early intervention being effective, that could be down to the form of therapy not the time of intervention.

    Where did the quote come from Dolphin?
     
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  14. Dolphin

    Dolphin Senior Member

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    There was a link at the end, but it no longer works.
    However,
    http://www.nbt.nhs.uk/news-media/la...d-£250000-study-effects-early-intervention-me works.
     
  15. Leopardtail

    Leopardtail Senior Member

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    For ME the primary issue diagnosis wise is the mis-diagnosis of 'Depression' or 'Malingerer' being used. The problem with which is that the standard advice given 'stay as active as possible' is great for depression but the exact opposite of correct for somebody with ME where 'pacing' is the order of the day. The advice given in my case did active harm and as such was full blown negligence - I followed it to the letter and did myself severe harm causing regular and severe PEM and worsening fatigue.

    I am some sympathy for GPs given the swarm of utter nonsense they are presented with. I worked in at technical profession myself though and 'I just don't understand this' was not an acceptable answer. I was required to learn and to retrain constantly at my own expense. The attitude needs to be instilled in GPs that it is not okay to fail.

    The things that really ticks me off is the diagostic issue. M.E. has a unique pattern of fatigue, and for me its as easy to diagnose as the common cold. No other form of illness has PEM or delayed onset fatigue. It would take two of three well stuctured questions to work it out, long before the mass of severe symptoms presents.
     
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  16. Leopardtail

    Leopardtail Senior Member

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    Given that the entry score of the PACE trial was low enough for CFS recovery that is deeply inappropriate.
    For me personally P.E.M. or D.O.F. should be mandatory for any ME trial.
     
    Min likes this.
  17. A.B.

    A.B. Senior Member

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    250k is pretty expensive for what will most likely be a complete joke.
     
    Min likes this.
  18. Esther12

    Esther12 Senior Member

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  19. Leopardtail

    Leopardtail Senior Member

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    Well,
    rather surprisingly the conclusions were not that positive indicating no improvement in mental performance of quality of life scores. That is reassuringly honest.

    They don't define 'normal' for the SF-36 score in the abstract and indicate that 30% are 'normal' physically before treatment. They also report few many as normal mentally. Unless the normals are mood rather than cognitive function this does not seem ME enough.
     
  20. peggy-sue

    peggy-sue

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    The only way this could ever be vaguely justified is if they had had a control arm of newly diagnosed folk who had 6 months of complete bed rest.
    (and they used proper criteria for diagnosis. Ha!)

    That way, we could tell if complete rest is better or worse than trying to do their treatments.
     

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