Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Fewer than 1 in 3 health trusts offering adequate care for ME sufferers

Discussion in 'General ME/CFS News' started by Ember, May 8, 2012.

  1. Ember

    Ember Senior Member

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    Fewer than one in three health trusts is providing adequate care for chronic fatigue syndrome sufferers, new figures suggest.


    By Christopher Hope, Senior Political Correspondent

    08 May 2012

    http://www.telegraph.co.uk/health/9...-offering-adequate-care-for-ME-sufferers.html

     
    taniaaust1 likes this.
  2. Enid

    Enid Senior Member

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    That is interesting Ember - recognition of ME by the Telegraph at last. Good for them ! Makes up for one particular Doc joining the media circus last year in promoting CBT.
     
  3. justy

    justy Senior Member

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    Thanks Ember for posting. I live in Wales where there is NO provision at all for any M.E patients. My Gp hasnt made a managment plan and despite at some points being severely ill i never had a home visit. Even now i find it takes months to organise a visit to the GP - then it never seems worth it!

    Good on the Telegraph - do you have a link - are they taking comments?
     
  4. Ember

    Ember Senior Member

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  5. justy

    justy Senior Member

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    So sorry Ember - duh! can see it now. My fault for having a defecftive brain.
    Justy
     
  6. Calathea

    Calathea Senior Member

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    I'm too tired right now to go through the process of registering to comment on the Telegraph, but frankly this sounds like it is making the situation seem much better than it really is. For starters, the "right treatment" they describe is not actually helpful for the vast majority of ME patients, and is more likely to make them worse. There are no health boards which are out there curing even a decent percentage of ME patients, and probably none which are even managing to halt the condition through symptom management for more than a tiny minority. As for home visits, it neglects to mention that this is only home visits from GPs - if you need to see someone at a hospital, you are sunk. There is no discussion of the deaths, or even of the severity of the condition. For an article like this, this is downright misleading, as it implies that the worst that could happen with ME is that your schooling could be a bit disrupted if you're a child. Children at least have guaranteed carers, adults don't and can end up deteriorating appallingly through lack of care in the home. The bit about the "right treatment" is making me wonder whether it's worth taking to the Press Complaints Commission - do you think it's provable that it's inaccurate?
     
    Wonko likes this.
  7. Enid

    Enid Senior Member

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    I did make a point on comments (whilst recognising ME is at last accepted in the Telegraph as opposed to the "you are all wrong" previously) to the effect of the history of disbelief in the UK and the research and findings over many years by Docs and Scientists internationally now resulting in understanding the underlying pathologies and medical treatments being prescribed. Nothing like that in these parts.
     
    Wildcat likes this.
  8. Esther12

    Esther12 Senior Member

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    I'd much rather have no 'care' than be placed under the authority of people like Esther Crawly and Peter White.

    Crawley trying to claim PACE showed a recovery rate of 30-40% for CBT/GET seemed to be the start of their campaign for them to keep being given lots of money, despite their actual results and the growing disinterest in the NHS for placebo treatments like homoeopathy etc. Sad to see that Action for ME seems to be joining in this game.
     
    Wildcat likes this.
  9. peggy-sue

    peggy-sue

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    AfME has always been "part of that game" - and the only treatment they recognise is CBT and GET.
    They're behind the Scottish Guidelines being held up for a year to get watered down to include the nice garbage.
     
    taniaaust1, Wildcat and justy like this.
  10. Min

    Min Guest

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    letters to the editor can be sent to:

    dtletters@telegraph.co.uk


    and should include full address and phone no.

    AfME are unfortuantely a huge problem for us in the UK as they work closely with the Wesselyites, as they did on the PACE trial
     
    Wildcat likes this.
  11. PhoenixDown

    PhoenixDown Senior Member

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    1 in 3, that many? Wow, more than I expected.
     

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