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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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ME / CFS is a vote winner

Discussion in 'Petitions' started by rich f, Apr 25, 2014.

  1. rich f

    rich f

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    Hello all,

    I am a very new sufferer (less than 18 months), and new to this site. My post may well have been discussed in the past. If so, please ignore
    ................

    There is not much going in our favour for those of us who have this horrible illness. However, we do have one thing that we are fortunate to have – strength in numbers and voting power. In the UK there are around 250,000 sufferers(and I am sure there are many millions around the world). Assuming each sufferer has 4 close relatives / friends, then we have over 1 million voters who may well be swayed into voting for a party that increases funding for ME research.

    The various political parties should be interested for 2 main reasons.

    1: A potential increase of 1 million voters
    2: It would cost very little. Even if they announced an increase in funding of just 5% of that spent on other major diseases it would be a massive boost for us.

    I suggest that we all push this message to our local political leaders (MPs in UK). We need to sell the message that this is an easy win for a political party. I have already emailed and written to mine.

    To find your local MP in the UK see:

    http://www.parliament.uk/mps-lords-and-offices/mps/

    For those around the world please do the same.
     
  2. golden

    golden Senior Member

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    Clear Light
    If I was to specifically vote for a party on its M.E./C.F.S. manifesto - I would want an awful lot more than 5% research.

    That doesnt even go near it.

    Plus there would need to be immediate changes in the system to stop the abuse of M.E. C.F.S. patients that is currently taking place.
     
    Wildcat likes this.
  3. ukxmrv

    ukxmrv Senior Member

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    London
    Hi Rich, do you know about the APPG on ME in Parliament?

    If patients contact their MP it might be a good idea to ask them to join the APPG and use that to communicate their patient voice there. I'm not advocating the APPG as being a solution but as patients themselves are banned it would be useful for MP's to join and ask the difficult questions there that we patients cannot do.

    Personally I wouldn't contact my MP and ask for 5% extra funding as it is most likely going to go straight into the pockets of Peter White et al.

    If we patients were to campaign on this I'd like to see a more specific demand.
     
  4. peggy-sue

    peggy-sue

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    Nothing would ever persuade me to vote tory or "new" labour, or lib-dem.

    Sorry. Voting is far too important to mix it up with allowing certain parties in, on the grounds of one thing I personally would like.
     
    November Girl likes this.

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