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UK General Election: Urgent! Time to remind Nick Clegg about ME!

Discussion in 'Action Alerts and Advocacy' started by OverTheHills, May 12, 2010.

  1. OverTheHills

    OverTheHills

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    Advocacy is not my forte but....

    1.Nick Clegg is now deputy PM
    2.He 'gets' ME - see the letter below
    3.Its ME awareness week.....​
    And to me 1+2+3= time to remind him about helping ME'ers

    OK its his first week in the job and he will have other things to worry about; and Lib Dems do not have the Health portfolio. But it seems to me that oppressed UK sufferers have at last an opportunity to make a real dent in the toxic political situation. I can help with this but while I'm a Brit, I live in NZ now and I don't have any advocacy skills. Can we get a few keen people together and cannibalise other letters to get something out?

    Nick Clegg Letter

    Its from Feb 2008 and there is a copy of it on the MEAssoc website. http://www.meassociation.org.uk/inde...ews&Itemid=161 In a letter to a constituent who lives in Sheffield, Mr Clegg wrote:

    Dear Mr xxxxxx

    Thank you for your correspondence regarding some of the problems that are currently causing concerns for people with ME/CFS including inadequate research and the recent NICE guidelines on the subject.

    Unfortunately, a ballot to secure an adjournment debate on these issues, scheduled for the week commencing November 19, was unsuccessful.

    As Im sure you are aware, one of the main obstacles to the adequate treatment of ME is the lack of knowledge and consensus about the disease. There are many theories as to the causes of the disease but no conclusive proof to fully support any of them. This is why it is vital that more research is done into the causes and progression of this difficult to diagnose condition.

    What is not in doubt is the very real physical and psychological damage caused by this disease. The Liberal Democrats have long argued that funding and research must be focused on the bio-medical factors involved and not just simply managing the psychological issues.

    Whilst I welcome the fact that NICE conducted an investigation into ME/CFS, I do understand and empathise with the concerns raised about the findings. The recommendation that patients with ME/CFS be treated using an Activity Management Programme made up of Cognitive Behavioural Therapy and Graded Exercise Therapy does not follow the World Health Organisation guidelines which categorise ME as a neurological condition. In failing to recognise the bio-medical problems of ME sufferers, the NICE guidelines also fail to recognise the needs of ME sufferers.

    To help address the unique challenges posed by a complex and poorly defined condition like ME, the Liberal Democrats believe in the establishment of an independent scientific committee to oversee all aspects of ME research. We would also like to see the government and the Medical Research Council work with ME sufferers and biomedical researchers in order to achieve a proper understanding of the condition, challenge unjust perceptions and consider the issue of research funding.

    Whilst we welcome the establishing of local centres to focus on ME, we feel the NHS is still too centralised and too unresponsive to the needs of patients and families. We believe the special needs of those suffering conditions like ME can be better addressed by empowering patients and making the NHS more accountable at local level.

    Thank you again for taking the time to contact me about this issue.

    Yours sincerely

    Nick Clegg MP

     
  2. jace

    jace Off the fence

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  3. Sasha

    Sasha Fine, thank you

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    This is a great idea, OTH. In one of her final blogposts, "Zonko" (goodbye, Zonko!) wrote:
    The only thing that we can be sure of is that things are about to change; and since we haven’t seen any government funding of biomedical research for ME/CFS over the years, a change in government opens up an opportunity for things to be done differently.

    Of course, the economic situation is dire, but surely that’s all the more reason to spend a few million to get billions back in taxes and saved benefits as we all get cured and rush back to work? And among all these new MPs, surely there’ll be some who have family members with ME/CFS and who will want to help make that happen?​

    I think the "spend millions, get billions" is a good point to push now - we'll be having an emergency budget within the next 50 days and we're going to get clobbered. There's no point asking for stuff that's going to cost money for an unpopular disease in this sort of climate but every reason to show people how to save money on it.

    Does anyone know how much ME/CFS costs the UK economy?
     
  4. Marco

    Marco Grrrrrrr!

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    This is a great idea.

    Perhaps also is now the time to remind David Cameron and his newly appointed Minister for the DWP of Mr Cameron's comments during the election that the private company now contracted to assess Incapacity Benefit/ESA claimants should only be paid once people have been declared fit and have been placed in and able to sustain employment.

    Having experienced chronic illness in his own family I'm sure Mr Cameron will be sensitive to the problems involved, not to mention sensitive to the ongoing waste of NHS resources. I wonder is his government aware of the results of the FINE trials?

    As for the costs to the economy there have been various estimates, likely understimating the true scale.

    I'm quite happy to write a personal letter to any members of the new coalition government detailing the cost to me and the ongoing costs to the taxpayer of my untreated illness.
     
  5. jace

    jace Off the fence

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    There can only be guesstimates. Say 250,000 x 20,000 = 5,000,000,000 plus 39% of 23,000 x 125,000 (tax and NI on average income for 50% of sufferers) = 1,121,250 ==
    Six and a quarter billion (good as any) Hope I haven't slipped any decimal places ;)
     
  6. Sasha

    Sasha Fine, thank you

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    Good start, jace, but if possible I'd like to hit them up with some official figures or something a health economist has published in a journal so they'll take the figures seriously. Every MP is going to get a shedload of stuff across their desks over the next few weeks from people pleading all sorts of causes and anything that is questionable on facts is going to slip down the pile.

    Anybody?
     
  7. Bob

    Bob

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  8. maryb

    maryb iherb code TAK122

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    So what can we do to remind him of his views back then?
     
  9. Bob

    Bob

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    That's a good question Mary, especially as Vince Cable's department overseas the MRC, so he could really help us, and there is a LibDem, Paul Burstow, in the Department of Health, whose responsibilites include "Long Term Conditions, including cancer and diabetes".

    I guess we need to write to all the relevent LibDems we can think of...

    So this could include...

     

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