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****** !!!!!!!! ****************!!!!!!!!!!!!!!!! Junior version of PACE funded PI Dr Crawley

Discussion in 'Latest ME/CFS Research' started by Countrygirl, Jan 28, 2016.

  1. Countrygirl

    Countrygirl ME is not MUS

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    ****** !!!!!!!! ****************!!!!!!!!!!!!!!!! :mad::cry::cry::aghhh::aghhh::aghhh::aghhh:



    http://public.ukcrn.org.uk/search/StudyDetail.aspx?StudyID=19035


    Research Summary
    Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (CFS/ME) in children is relatively common affecting up to 2% of secondary school children. Although national guidance recommends that children with CFS/ME are offered either Cognitive Behavioural Therapy (CBT), Graded Exercise Therapy (GET) or Activity Management, there is no evidence for the effectiveness or cost effectiveness and acceptability of GET for children with CFS/ME. This study will investigate the feasibility and acceptability of conducting a Randomised Controlled Trial (RCT) to investigate the effectiveness and cost-effectiveness of Graded Exercise Therapy compared to Activity Management for the treatment of CFS/ME in children. We will interview participants, their parents, researchers and clinicians to improve the study and the interventions. If MAGENTA is feasible, we will move on to a full study and find out whether GET is effective and cost effective. The study will be conducted in three specialist services: Bath/Bristol, Cambridge and Newcastle. Children will be eligible if they have CFS/ME, are aged 8-17 and are not severely affected, are not referred for CBT at the first assessment and are able to attend follow up appointments. The study is funded by the NIHR.
     
    Last edited: Jan 28, 2016
    actup, MeSci, Woolie and 3 others like this.
  2. Esther12

    Esther12 Senior Member

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  3. John Mac

    John Mac Senior Member

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    "Main Exclusion Criteria
    Too severely affected to attend hospital appointments (and require a domiciliary assessment)
    Referred for CBT at their first clinical assessment
    Unable to attend follow up appointments" (my bold)

    So if any of the children suffer a serious reaction to the GET they will be excluded from the results :mad:
     
    Solstice, slysaint, actup and 23 others like this.
  4. jimells

    jimells Senior Member

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    Has this study been approved by the institutional review board? I don't know anything about them, so I am wondering if that could be a place to apply pressure - maybe force a public hearing or something.

    With all the evidence that GET is harmful, how could it be ethical to study this treatment in young people who perhaps are too young to properly give consent?

    Edit: I see it has been approved already:

     
    Last edited: Jan 28, 2016
  5. jimells

    jimells Senior Member

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    The MAGENTA trial

    Participants in this study have not been properly warned of possible adverse effects, so there is no informed consent for this trial.
     
    Solstice, slysaint, Justin30 and 24 others like this.
  6. John Mac

    John Mac Senior Member

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    Tom Kindlon is compiling a dossier on the negative impact of GET.
    Maybe we could pass that info onto the study approvers.
     
    Solstice, Justin30, JaneH and 9 others like this.
  7. Countrygirl

    Countrygirl ME is not MUS

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    !
     
  8. snowathlete

    snowathlete

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    Pretending that there is no risk is clearly unethical given all the reports of harm, including at the centres that are involved in the trial, so they know that adult patients have reported harms from GET.
     
  9. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    ref: 15/SW/0124

    I wonder what the SW stands for?
     
    Invisible Woman and jimells like this.
  10. Countrygirl

    Countrygirl ME is not MUS

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  11. Countrygirl

    Countrygirl ME is not MUS

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    Simon Wessely or South West?
     
  12. Countrygirl

    Countrygirl ME is not MUS

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    I hope someone passes this new development on to Prof Coyne.
     
    Justin30, leela, Valentijn and 4 others like this.
  13. msf

    msf Senior Member

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    This Crawley woman seems to be trying to take over from Wessely.
     
  14. halcyon

    halcyon Senior Member

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    She's doing a pretty good job so far. She's attacking ME patients like it was her new year's resolution. Going after Dr. Speight, getting inane "research" published, now this. Someone remind me how this woman was allowed to weasel her way onto the board of the CMRC collaborative?
     
  15. BurnA

    BurnA Senior Member

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  16. Invisible Woman

    Invisible Woman Senior Member

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    Does anyone have any contacts at the Tymes Trust? I think they should be made aware of this.
     
    Solstice, Woolie, Valentijn and 3 others like this.
  17. charles shepherd

    charles shepherd Senior Member

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    News to me - I know nothing more than is in the information above. It appears to be a feasibility study. Disappointing to see no mention of consulting with ME/CFS organisations in the charity sector that have collected very detailed patient evidence on the efficacy and safety of CBT and GET. Will be interesting to see how 'activity management' is defined…...
     
    Helen, Solstice, actup and 14 others like this.
  18. As I've said:
    Bullies spiral into ever more abusive acts and manipulations, until the victim is destroyed, or they fight back and maim that bastard personally, or in a sane decent world, decent folk who are not that victims but are sickened by the abuse say "enough is enough!" and stop the wrong doing prefferwbly by moderate means.

    But since the UKs system is infested with corrupt scum, police, politicians local and national, bureacrats and civil servants, so-called "experts" who will spew lies for cash and "honours", secret societies like the Masons who will even stoop to protecting members who rape children...
    Well, expecting thr British system to ztop this bitch and Wessely is like expecting a "banana republic" to stop criminal but very profitable vivsection and other horrific experiments on adults and children...it's not going to happen

    Not all in the UK elite are scum but most are, even if they themselves do not commit horrible acts and crimes, they protect those who do. See Margaret Thatcher, never in British history has any bastard more deserved hanging than that evil, treacherous cow!
    It is her legacy of greed and selfishness which has massively worsened things, allowing vermin to writhe like maggots, eating into the heart of our country
    I'd have the lot tossed from the a white cliffs of Dover, like scraping shit off your shoe!
     
  19. taniaaust1

    taniaaust1

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    "Children will be asked to record the amount of exercise and taught to use a heart rate monitor with target heart rates."

    so once again another study where they wont even use devices to try to actually measure persons exercise periods.. pedometers or whatever they are called.

    Anyone getting worst with GET, will she rediagnose those and remove them from the study?


    are we about to see a study done even worst then the PACE trial? How can we as a community get guidelines put in place so studies are being done well when it comes to our illness?
    .....

    They will keep repeating these CBT and GET studies until they finally manage to fluke one with a better result.
     
    alkt likes this.
  20. beaker

    beaker ME/cfs 1986

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    Is there a way for one or all of the charities to take out an ad and warn parents ?
     
    Solstice, Yogi, JaneH and 6 others like this.

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