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Are we getting any further away from psych brigade in U.K

Discussion in 'General ME/CFS Discussion' started by neweimear, Feb 17, 2018.

  1. neweimear

    neweimear Senior Member

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    Interested in views regarding psych brigade's hold on ME/CFS? Is their grip loosening? I haven't the brainpower to keep reading all the threads, it seems like one step forward, two steps back...
     
  2. Sasha

    Sasha Fine, thank you

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    There's the potential for a huge step forward here:

    http://forums.phoenixrising.me/inde...e-carol-monaghan-pace-debate-on-20-feb.57791/

    And I think that that debate represents how far we've come in the past couple of years.
     
  3. andyguitar

    andyguitar Senior Member

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    They are on the back foot now. One big push and they all fall down.
     
  4. alex3619

    alex3619 Senior Member

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    My current take on this is we are winning the science, but they have a strong grip on the medical politics. As they become more discredited overseas, even more than now, it will eventually affect the UK situation, but I cannot even guesstimate how long that will be.
     
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  5. andyguitar

    andyguitar Senior Member

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    End of the day @alex3619 it comes down to money. ME/CFS costs the UK a lot of money in healthcare/social security costs. If high quality, credible evidence that proves the illness is organic in origin is presented to the UKs NICE committee there will be a huge shift in favour of sufferers. UK Gov can move quickly to get things done when it has a financial incentive to do so.
     
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  6. alex3619

    alex3619 Senior Member

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    This has been known for decades. The CBT/GET claim has capitalised on this by promising cheap therapy. Its always been amazing the governments and bureaucracy, world wide, have accepted the arguments and not kept track of costs and changes in costs. Given how deeply and how many times bureaucracy has failed to track tangible improvements from CBT/GET I have no assurance they will see reason until the evidence is egregiously obvious and right in front of them.

    In circumstances like this I expect the sea change will happen very fast and to an extreme extent, but its very hard to tell when that might happen. It might be this year. Or another ten years from now. In the meantime we have diagnostic tests being developed, a continually improving understanding of the physiology, and new potential treatments being considered though still far from proven.

    It would not surprise me if large swathes of bureaucracy one day claim they could see what was happening but could not do anything to fix it without published scientific evidence. That evidence is what we keep seeing published regularly now.
     
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  7. andyguitar

    andyguitar Senior Member

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    One thing that has not helped- at least in the UK- is that there has not been very good surveillance of ME/CFS so the true cost has not been widley known about in political circles.
     
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  8. alex3619

    alex3619 Senior Member

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    This is global, and compounded by poor diagnostic criteria or even no diagnostic criteria at the point of diagnosis. There is too much that is not known. However, as a case in point, there should be records as to how many receiving benefits under DWP, albeit many probably failed in their application for assistance. Of those it is very likely there are records as to how many received CBT or GET or both. Of those, there will be records as to how many no longer needed benefits. All of these are most likely not in a central database format, and would require additional investigation to find out how effective these approaches are, in real terms.

    I recall that in Belgium I think one such investigation occurred and they found no benefit from these treatments.
     
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  9. andyguitar

    andyguitar Senior Member

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    Adding up the cost is probably impossible. Over here some benefits and health costs are met by central gov ie NHS and DWP. Cost of home care is mainly the responsibility of County Councils, help with paying housing bills(rent) comes under local councils. Other costs are things like cost of a parent having to give up work to look after an affected child. And then there is the cost of an adult giving up work to look after an adult. ME really is a hidden illness. But the spotlight is starting to shine on it.
     
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  10. alex3619

    alex3619 Senior Member

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  11. alkt

    alkt Senior Member

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    the only time the uk government move quickly is when raising taxes .everything else is done at a snails pace unless there are very wealthy vested interest at work.
     
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  12. MEMum

    MEMum Senior Member

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    I haven't looked at it, but didn't the OHC (Optimum Health Clinic) produce a piece on cost of MEin Uk relatively recently?
    I have no idea how accurate etc it is.
    Mary Dimmock co-authored a paper, from the US point of view.
     
  13. blueberry

    blueberry

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    The NHS clinic (Leeds) I attend is based in a psychiatric unit. Kind of says it all, really.
     
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