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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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"Just Four Quid" fundraising methods for ME/CFS research apply everywhere - join in!

Discussion in 'Action Alerts and Advocacy' started by Cort, Aug 20, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    Fatally Divided and Divisive Community

    Jeremy Bearman is one of the most innovative people working to advance our interests today. He contributed substantial money to UK support groups and is always working to find a way to get the community involved. But his latest effort - a very clever effort - to show people how to save money in their daily and then donate that saved money or a portion of it to an ME/CFS Support group for research has utterly failed. One reason - sniping by people who spread false rumors about his effort. Another is simply the lack of interest in supporting research efforts. You've got to wonder what is the matter with portions of our community. Here's his latest message.

    Jeremy there's been doing this for quite a while and you could tell it started to get to him

    t
     
  2. Min

    Min Senior Member

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    It is a crying shame there has been what seems a deliberate and successful attempt to sabotage the 'just four quid' campaign. Both charities the campaign aimed at supporting are doing wonderful work with small amounts of money.

    Here in the UK, the taxpayer's funding allocated to M.E. research is all wasted on the psychiatric profession instead of going to biomedical research.



    On a lighter note, ME Research UK Christmas cards are now available:

    http://www.meresearch.org.uk/support/christmascards.html
     
  3. Jody

    Jody Senior Member

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    I have heard of the fourquid thing, a girl I know with cfs who has a blog in the UK gives to that. She thinks it is a great campaign.
     
  4. Jody

    Jody Senior Member

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    Min,

    Welcome to the forums. :)
     
  5. Tony

    Tony Still working on it all..

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    Just four quid is a great idea! Hell, I donated and spread the word about it over here to some online groups. It supports the research of MEResearchUK that I use in my posts...:) Very worthwhile.
     
  6. rosebud

    rosebud

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    I too, believe we need more research funding and if everyone contributes 4 quid ( i don't know how much that is but it doesn't sound like a lot) just think what could be done!

    A few board members from KIm O'Leary's organization , a few patients and I are forming an initiative in Chicago to help raise funds for research. WE are just coming up with ideas at this time and would love any suggestions you all have.

    Rosebud
     
  7. Tony

    Tony Still working on it all..

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    Melbourne, Australia
    Four quid (English pounds) is about US$6-7. Some people on the campaign website are donating weekly as they save from the money saving tips the site provides.
     
  8. Cort

    Cort Phoenix Rising Founder

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    MERUK is absolutely one of my favorite organizations. It has a great website, it engages in innovative research, it provides lots of great information....I just think that they're great! Jeremy estimated that everyone with this disease in the UK provided just four quid they would raise 1,000,000 pounds (?). So far he's raised 1,000 I think. :(

    Check out the website-it's really interesting www.justfourquid.com
     
  9. Sasha

    Sasha Fine, thank you

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    Hi all - my first post, having discovered your truly fantastic site this week after googling on XMRV. I think you're all great and the atmosphere in your forum is wonderful!

    I live in the UK and have been following a daily blog called Just Four Quid that aims to help people raise money for two UK ME/CFS biomedical research charities by offering a new moneysaving tip each week; the idea is that if the tip saves you ten pounds, you might donate five pounds. So you're better off and so is your charity of choice!

    The methods the blog suggests are mostly applicable to anyone anywhere in the world (though a few would probably just apply in the UK). While we're all excited about XMRV but maybe broke and wondering how to scrape together any money to donate, I'd like to suggest that you maybe look at the blog and see if you can use or adapt any of the ideas to save money that you could then donate part of to the ME/CFS biomed charity of your choice, including the WPI. Just Four Quid supports ME Research UK and the ME Association's Ramsay Research Fund but I'm sure that they'd be really happy for your money to go to anywhere with similar aims - and of course if we donate within our own countries and are taxpayers we effectively donate more because of tax breaks.

    The blog is written to be fun to read and so far has included the "Week of Charitable Bottoms" (encouraging people to buy a year's worth of discounted toilet roll and donate part of the saving); the "Week of Bookselling" (suggesting that people sell their unwanted books on Amazon and telling them how to do it) and the "Week of the Back of the Cupboard" (proposing that we get the weird stuff in our kitchen cupboards that we wish we hadn't bought and eat it up before we buy more food).

    The blogger, who is an anonymous woman with ME/CFS, does all the projects and donates publicly to set the example. People donate via JustGiving, a UK website that supports thousands of charities and allows people's donations to be made public so that others are encouraged to give; or directly to the charities at their offices.

    The blog is running for a year until May 11 2010. I hope it inspires others to save and give - as others have said on this site, a little from each of us adds up to a huge amount of money! :)
     

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