The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Science Media Centre with Holgate/Crawley/McCrone - more anti-patient prejudice? (FITNET)

Discussion in 'General ME/CFS Discussion' started by Esther12, Oct 31, 2016.

  1. Esther12

    Esther12

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    Doesn't look good to me.

    http://www.sciencemediacentre.org/testing-a-controversial-treatment-for-cfsme-in-children/
     
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  2. Dolphin

    Dolphin Senior Member

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    I thought I would set up a thread for this. Looks like there will be quite a lot of coverage.
     
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  3. Dolphin

    Dolphin Senior Member

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  4. skipskip30

    skipskip30 Senior Member

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    Just when you think things are turning a corner something like this comes up.
     
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  5. Dolphin

    Dolphin Senior Member

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  6. Dolphin

    Dolphin Senior Member

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  7. Dolphin

    Dolphin Senior Member

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  8. Dolphin

    Dolphin Senior Member

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  9. Esther12

    Esther12

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    That's pretty appalling.

    I am surprised that coverage this bad is still being promoted by the SMC.
     
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  10. Dolphin

    Dolphin Senior Member

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  11. AndyPandy

    AndyPandy Making the most of it

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    Australia
  12. alex3619

    alex3619 Senior Member

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    Here is what I would like to see from anyone who buys into this and it does not work and makes things worse. Get together with other patients, and file a group complaint with the GMC.
     
  13. alex3619

    alex3619 Senior Member

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    I wanna see the published research. That is needed so we can analyze it. I wonder if the long term results are nada just like the last study.
     
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  14. JamBob

    JamBob Senior Member

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    The Empire strikes back.....:bang-head:

    • Why is there such hostility around trials in children from some patient groups?


    I suppose this will have involved more anti-patient propaganda such that all British journalists who attended will now be on-message for Magenta.


    If EC really cares about helping kids with ME - why didn't she fly to Florida this week to listen to the current developments in research instead of spending the time organising a press conference to promote yet more psych propaganda?
     
  15. alex3619

    alex3619 Senior Member

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    Notice they do not mention the internationally recognized scientists, doctors, psychiatrists, statisticians etc., including Nobel laureates!
     
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  16. Esther12

    Esther12

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    Sounds like it's only just starting, so won't be due for a while. If it's another poorly designed waste of money I'm not desperately keen for results!

    http://forums.phoenixrising.me/inde...for-children-media-blitz-november-2016.47677/

    The media coverage in Dolphin's thread makes it look like this was the sort of anti-patient propaganda you'd expect. Disappointing Holgate was involved, but I think it has finally woken me up to the CMRC being a mistake. I think I let desperation/hope lead to some wish-thinking there.
     
    Last edited: Oct 31, 2016
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  17. RogerBlack

    RogerBlack Senior Member

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    Last edited: Oct 31, 2016
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  18. alex3619

    alex3619 Senior Member

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    I wouldn't fund it, but its just as important to have independent analysis, and particularly to look for objective outcome measures. I wonder if they will include school grades. Its not enough to get students back to school if it means they are failing or doing much worse than before.
     
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  19. hixxy

    hixxy Senior Member

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    How do they even get away with that title? :(:mad:
     
  20. RogerBlack

    RogerBlack Senior Member

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    When trying to contact reporters involved, try to keep your responses brief, and point them to factual sources (not ranty threads). For example, discussions of what the recovery criteria actually means, and actual rates from PACE, not personal attacks on the BPS crowd.
     

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