The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Could this be an official UK apology?

Discussion in 'General ME/CFS News' started by Firestormm, Jan 16, 2013.

  1. Firestormm

    Firestormm

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    Nah probably not. But still:

    Didn't really answer the question:

    Parliamentary answer to written question: 15 January 2013: http://www.publications.parliament..../cm130115/text/130115w0002.htm#13011576001612

    Still I suppose it amounts to an acknowledgement that with so many questions being asked in the past year at least, the Dept of Health has come to recognise that 'Houston we have a problem'.

    Now, of course with the Health and Social Care Act (which Labour have said they will repeal if they win the next election), the burden for effective healthcare can be placed on the patient's shoulders. The Government can more effectively 'pass the buck' to local providers and patient representatives - now they have been allegedly 'empowered'.

    That said, this Bill does enable patients to be recognised as having a say. Whether or not groups such as the one I am a member of in Cornwall, are demonstrably listened to and have their concerns acted upon - leading to service improvements as well as improvements in patient outcomes - is err... open to question :)
     
    Simon likes this.
  2. Min

    Min Guest

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    Decisions about our care? We can decide whether to be made worse by GET and insulted by CBT, or to have no so-called 'specialist' help at all. The severely affected (not represented by local groups) can choose whether to be left to rot - or left to rot.

    This isn't an apology, it's just the usual whitewash. The situation for people with M.E. in the UK continues to be a national scandal.
     
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  3. snowathlete

    snowathlete

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    Unfortunately Min is right I think. The NICE guidelines will surely still apply so a doc can still only give us the 'choice' of GET or CBT or nothing. It's just the usual crap to make it sound like the government is offering an improvement when in fact they. Ate offering nothing. But to the vast majority of the population that are healthy it sounds good. To the public, people like us have never had it better. And oh-how they (us) moan still!
     
    alex3619, taniaaust1 and Min like this.
  4. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    what, UK government apologize?! BUHAHA!!
    never were a more self righteous, lying,mendastic, pederastic, parasitic, venereal, venal, slithering, slimey, vituporous, ignorant, verminous, callimonous, rapacious, deceitful, yellow-bellied, chancroidal, champagne-swilling, janus worshipping, goat blaggering bunch of putrescent pustules to have ever walked the Earth! :mad:
    *spits!*

    Even those who have fought and died for this nation have been shat on by those scum, denied recompense or apology until they are all or mostly DEAD.
    Nealry a million people have been slaughtered in Iraq because of the evils and chaos we started.
    Do I see those responsible swinging from English oak by a rope of fine hemp, like carrion crow by farmer air-shone as warning to other foul beasts? :devil:
    no, nor even spanked upon the wrist, for ye verily, it is "you have been caught saying boo-boos! so bugger off and earn millions form all those nice juicy arms deals you made happen!" :confused:

    sigh
    alas, it's the way of this crappy world
    See vatican child abuse cover up, American Agent Orange issues etc etc.
    to apologize, one must feel guilt
    how can sociopathic swine feel guilt?
    power corrupts, absolute power, corrupts absolutely....


    there are a FEW decent folk in parliament, i must admit, but they are vastly outnumbered
     
  5. PhoenixDown

    PhoenixDown Senior Member

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    A proper apology would include acknowledging the damage done by statements like "there are no tests" in official literature, as well as publication bias in the BMJ, and acknowledging the fact that GP's routinely refuse necessary tests to rule out every relevant abnormality, and that the NICE guidelines are no where near up to standard.
     
  6. Sasha

    Sasha Fine, thank you

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    I don't read this as an apology for inflicting a ridiculously broad set of diagnostic criteria on us, or calling our disease by a trivialising name, or trying to force us to exercise regardless of the evidence or trying to brainwash us into thinking we're ill because of our silly illness beliefs - it's so vague it could be an apology for not providing enough CBT/GET centres.

    Someone who wants to make an apology worth having makes it clear exactly what they're apologising for and precisely how their behaviour will change in future.
     
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  7. alex3619

    alex3619 Senior Member

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    [Satire] "We apologize for the lack of services to the people with CFS/ME. In the future we will provide better guidelines for delivering CBT and GET, with more centres to deliver them, and more funding for research into CBT and GET and the underlying somatoform disorders."

    Apologies have to be specific. The above satirical comment would be consistent with the "apology". It might even be what they really mean, who knows? While acknowledgement that there is a problem is good, acknowledgement can be politician-speak for "there, there, its all right, we see you, now go away and shut up".

    Tangible changes are required for an apology to have meaning.

    There are indeed signs that things are improving, and that things are getting worse too. The funding to the physiology research by Newton et. al. could be a very good thing. The UK has a history of intermittent good research on ME, but so far its finally been shut down, ignored or goes away for other reasons. On the other hand the DWP/ATOS scandal is increasingly looking like an excuse to save money at the expense of the sickest and least advantaged people in society. Many of those people have ME or CFS or related disorders.

    If they acknowledge that patients have been let down, advocates need to make a point to find out what they intend to do about it, then make sure they actually do it.

    From wikipedia, this appears to be what they are offering:

    "The proposals are primarily the result of policies of the Secretary of State for Health, Andrew Lansley. Writing in the BMJ, Clive Peedell (co-chairman of the NHS Consultants' Association and a consultant clinical oncologist) compared the policies with academic analyses of privatisation and found "evidence that privatisation is an inevitable consequence of many of the policies contained in the Health and Social Care Bill."[4] Lansley says that claims that the government is attempting to privatise the NHS are "ludicrous scaremongering".[5]"
    http://en.wikipedia.org/wiki/Health_and_Social_Care_Act_2012

    Privatization is NOT a solution. Its enhancing the problem. If they are indeed going down a privatization path, despite the protest that they are not, then I suspect service provisions will worsen over time. So what is it they are really doing?

    "When the white paper was presented to Parliament, the Secretary of State for Health Andrew Lansley told MPs of three key principles:
    • patients at the centre of the NHS
    • changing the emphasis of measurement to clinical outcomes
    • empowering health professionals, in particular GPs."
    Clinical outcome is a worry, depending on how that is defined. Nothing currently available produces recovery or return to work on a consistent, provable, objective basis. So is nothing what they will deliver? How about effective symptomatic treatment? Effective monitoring for health complications? Effective medical screening to rule out other, treatable, conditions?

    "On 19 January 2012 two major unions of healthcare professionals that had previously tried to work with the Government on the bill, the Royal College of Nursing and the Royal College of Midwives, decided instead to join with the British Medical Association in "outright opposition" to the bill.[32] On 3 February 2012 the Royal College of General Practitioners also called on the Prime Minister to withdraw the bill."

    The medical profession is against the Health and Social Care Act 2012 reforms. If they are against it then its likely to be a wolf dressed up in sheep's clothing.

    Bye, Alex
     
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  8. biophile

    biophile Places I'd rather be.

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    All I hear are muffling noises. Apologies are difficult in these positions though:

    [​IMG]

    [​IMG]

    The really impressive feat is being able to do both simultaneously.
     
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  9. alex3619

    alex3619 Senior Member

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  10. biophile

    biophile Places I'd rather be.

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    There is a UK based ME organization which has harsh but funny cartoons in their newsletters, some of which have included NICE, NHS, and PACE. But for the life of me I cannot remember who it was or find them online again.

    Some of the cartoons on Dr Speedy's blog are entertaining as well.
     
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