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What is the current NHS service provision for patients severely affected by CFS/ME (McDermott et al)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jul 2, 2014.

  1. Dolphin

    Dolphin Senior Member

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    Free full text: http://bmjopen.bmj.com/content/4/6/e005083.full

     
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  2. Dolphin

    Dolphin Senior Member

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    The review history is available for this online. I read it quickly and found nothing of interest in it (sometimes I find these interesting to read to see what points reviewers disagree with or suggest be made), so I wouldn't recommend people spend their time on it.

    Here are the two reviewers and the interests they declared:

     
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  3. Esther12

    Esther12 Senior Member

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    Doesn't sound like they're missing out on much, especially as a lot of CFS centres seem to be pretty quacky in what they do provide.

    While I'm really sympathetic to those seriously ill patients who just feel abandoned, at the moment, I'd be concerned that any attempt to roll out greater 'service' to them would just lead to them having to endure quackery. FINE is the only trial to have really looked at the severely affected, and found that providing 'pragmatic rehabilitation' to patients led to no improvement in reported symptoms, and problems with the therapists blaming patients for this. Seems crazy to increase spending by the NHS on 'services' which have no evidence of real value while so many of the severely affected are having to endure real hardships on account of the DWP's recent biopsychosocial reforms to the welfare system and cost cutting. To improve people's quality of life, probably better to give them money rather than those working for the NHS.
     
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  4. Esther12

    Esther12 Senior Member

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    Thanks. Really good idea to make these reviews public though - love it.
     
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  5. Dolphin

    Dolphin Senior Member

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    I didn't find this to be a very interesting article at all.

    None of the debates that exist in the field are discussed.
    All respondents seem to have said they're following the "party line" e.g.

    .

    No biological findings are mentioned that I recall.
     
    Last edited: Jul 3, 2014
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  6. Dolphin

    Dolphin Senior Member

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    This is the context in which everyone said they were operating:

     
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  7. Dolphin

    Dolphin Senior Member

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    Some of the figures and tables contain most of the information (but it's still not that interesting, I thought)

     
  8. Dolphin

    Dolphin Senior Member

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    Here's a factoid:

    However, I'm not sure how interesting this is as some people stay as cases for years, while others get discharged.
     
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  9. Dolphin

    Dolphin Senior Member

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    They say they're doing another paper on the survey data:

    Maybe this will be more interesting, maybe not.
     
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  10. Sasha

    Sasha Fine, thank you

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    When I saw this title, I thought it would be about NHS provision of all types of medical care for severely affected PWME - that is, can we access services when specific, non-ME things go wrong with our bodies? Can we get dentistry, gynaecology, oncology - anything - that we need, if we're bedbound?
     
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  11. Valentijn

    Valentijn Activity Level: 3

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    Medical care at home wouldn't fit into the psychiatric model advocating minimal doctor visits. They just want more funding so they can ridicule and torture patients at home now too.
     
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  12. alex3619

    alex3619 Senior Member

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    I know of one patient in the UK who got home "help" with cleaning. Even this was tainted though, as "help" consisted mostly of harassing her to do more, with the idea that more activity is better. The effects of the NICE guidelines go even outside the traditional medical model.
     
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  13. Sasha

    Sasha Fine, thank you

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    But not everyone buys into the psychiatric model. I'd like to see some sensible researchers doing some research on whether patients' medical needs are being met.

    Whether one attributes ME to organic or psychosocial factors, there's nothing about having it that prevents one from having dental problems, getting cancer, having gynae problems, any of this other stuff.
     
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  14. Sidereal

    Sidereal Senior Member

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    When I was in that state, my worst fear was that those "services" would one day show up at my door.
     
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