Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Outcomes & predictors of response from an optimised, multi-disciplinary intervention for CF states

Discussion in 'Latest ME/CFS Research' started by Cheshire, Sep 14, 2016.

  1. Cheshire

    Cheshire Senior Member

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    Andrew Lloyd participated
    Some of the people involved are from the "Fatigue Clinic, Lifestyle Clinic"

    No objective measures (Absurd, even from a psychiatrist perspective: Who would accept a clinical trial for anorexia nervosa without any measurment of weight gain and be satisfied with answers to questionnaires saying the patients feel they have gained weight?)

    No control group (from what I get)


    http://sci-hub.cc/10.1111/imj.13251
     
    Last edited: Sep 14, 2016
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  2. trishrhymes

    trishrhymes Senior Member

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    oh god, I can't bear to read another travesty

    :mad::mad::mad::mad::mad::mad:

    :cry::cry::cry::cry::cry::cry:
     
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  3. alex3619

    alex3619 Senior Member

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    The PACE trial showed no benefit at two and a half years. Are they planning a long term follow up study I wonder.
     
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  4. NL93

    NL93 Senior Member

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    No control group in an illness that has the tendency to naturally improve over time? Lol

    I think I am going to do a study on people with the flu, where patients have to touch their left foot with their right hand for an hour a day, while singing the national anthem. Then after 2 weeks I am going to ask if they feel a little better and will then conclude this is a helpfull treatment. :D
     
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  5. trishrhymes

    trishrhymes Senior Member

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    :rofl::rofl::rofl::rofl:

    Thank you!
     
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  6. A.B.

    A.B. Senior Member

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    I'm not quite sure what this means but it sounds bad.
     
  7. A.B.

    A.B. Senior Member

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    In the GET arm

    There is no discussion or data on daily step counts in the paper.

    This could have been something that adds credibility to a study design that cannot distinguish between biased responses and actual improvement. :whistle:
     
    Last edited: Sep 14, 2016
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  8. Sidereal

    Sidereal Senior Member

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    No, they just phrased it badly.
     
  9. A.B.

    A.B. Senior Member

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    Please elaborate.
     
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  10. Sidereal

    Sidereal Senior Member

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    What they meant to say here is that when they analysed only the CFS group (excluding the cancer fatigue patients) they found the same result as for the whole group. They awkwardly used "no difference in primary outcome" which unless you look at the result of the ANOVA in bracket could be interpreted as no difference, as in, no change from pre to post. But it was highly statistically significant at p<0.001.

     
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  11. Sidereal

    Sidereal Senior Member

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    How does the authors' disease model account for patients who are unable to carry out activities of daily living without help from carers or those who are unable to even carry them out with help? How does the brain get sensitised to experiencing fatigue from activities like taking a shower every day, washing your hair, brushing your teeth, preparing a meal? Would the brain not get desensitised to the fatigue sensations by doing these ADLs daily just as the brain would allegedly get desensitised to gradually increasing regular exercise? In my experience, this does not happen, there is an activity ceiling even for ADLs and the body/brain NEVER gets used to doing these activities and they never become less "fatiguing" over time.

    Clearly the authors have a pretty select sample here of patients who are able to achieve a level of structured regular exercise in addition to activities of daily living.
     
  12. Cheshire

    Cheshire Senior Member

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    Because it has to be disensitised through the use of CBT and graded exercice therapy, which are lead by great professionals.
    How dare you expect doing better on your own than with these experts, silly you?
     
    Last edited: Sep 14, 2016
  13. simeyss

    simeyss

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    Lloyd has been working on positioning himself in a post-PACE world for some time.

    This just came out:
    http://www.australiandoctor.com.au/...in-three-cfs-patients-improve-in-aussie-trial

    Full text:

    "More than one-third of patients with chronic fatigue syndrome improve when they undergo a program combining graded exercise and CBT, an Australian ‘real-world’ study shows.

    The study included patients with CFS who followed personalised programs, including five one-hour consults with an exercise physiologist and 6-8 sessions with a clinical psychologist at the University of NSW's Lifestyle clinic in Sydney.

    Of the 264 participants whose illness had lasted for an average of five years, 35% had a reduction in fatigue after the program, with their ‘capacity to walk more than 2km’ improving significantly.

    Mood scores also improved, and this was associated with the patients’ enhanced social functioning, said the authors, led by Professor Andrew Lloyd from the University of NSW.

    Improvement at 12-week follow-up was generally sustained at 24-week follow-up.

    The patients least likely to benefit from the intervention were men and people with chronic pain.

    “Uncontrolled pain can get in the way of this overall management program and it needs to be dealt with separately,” Professor Lloyd told Australian Doctor.

    The approach aims to put together interventions such as graded exercise therapy and CBT, which have proved to be helpful in treating the condition, he said.

    “In terms of what they can do in a day, the key limitation is this phenomenon that’s imposed by the disorder, where people do a certain amount physically — and sometimes it’s not very much — and, in Australian parlance, they’re then buggered for a long period of time," Professor Lloyd said.

    “The same kind of thing happens with cognitive demand. Patients try and do something on the computer for an hour, and after that the brain’s fuzzy and stays bad for hours or days."

    The UNSW team first looked at ‘pacing’ – finding the thresholds that lead to post-exertional exacerbation, and encouraging people to work up to, but not over, them.

    They then introduced graded exercise therapy and CBT.

    The Australian trial is being billed as the first real-world study of patients undergoing similar interventions as those shown to be effective in a controversial UK randomised controlled study (PACE).

    The NSW results support the UK findings, but with somewhat lower effectiveness, the authors wrote in the Internal Medicine Journal.

    This could be because the Australian intervention was only for 12 weeks, whereas PACE covered a year, the authors said.

    Although the program was currently delivered by clinical psychologists and exercise physiologists, it could be delivered by other practitioners, including GPs, said Professor Lloyd.

    The team is trialling an online manual explaining how to conduct the treatment, which could help other centres adopt the approach.

    He said the UNSW method was worth trying, particularly as treatment of CFS was “a therapeutic desert”."
     
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  14. worldbackwards

    worldbackwards A unique snowflake

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    In 24 weeks. O......K......
     
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  15. Sean

    Sean Senior Member

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    Oh boy, it's whack-a-mole- with this stuff, isn't it. Always one more to deal with. :grumpy:

    Given PACE has no effectiveness (and it doesn't), then you ain't got much of a claim.

    See previous comment.
     
  16. Paintmyturquoise

    Paintmyturquoise

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    Are you sure? The ones that have a difference are listed (diff ##) in the brackets, and you can have a confidence value for a negative/nil result.

    NB I haven't read the study yet - need to sit up and open my laptop and that's not an option right now
     
  17. Sidereal

    Sidereal Senior Member

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    Yes, I'm sure.
     

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