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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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A small frustration of mine

Discussion in 'Action Alerts and Advocacy' started by Frank, Jan 25, 2010.

  1. Julia Rachel

    Julia Rachel

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    Hi Frank!
    Organize the Masses and you will be a super hero! Don't loose faith! We might take a lesson from our President...he mobilized his campaign via internet.....I think it is a matter of "keep trying". I did not know about this, or I would have done it! I promise to do so next round...
    Best,
    Julia
  2. Esther12

    Esther12 Senior Member

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    It's been a long time since I've spent any money on treatments!

    I've been genuinely broke for quite a while, but it's now looking likely that I might have some spare money for a couple of years, and was thinking about donating to ME research: I just don't know who would be a good bet. A lot of the research I read doesn't seem that great, a lot of people here seem pretty luke warm about most of the charities... it makes it too easy to be selfish and spend it all on CDs and takeaways (how I've longed for takeaways).

    If this XMRV thing pans out, it looks like funding will dramatically increase anyway, so it might make sense to give to other areas of research now - but I've know idea what.
  3. _Kim_

    _Kim_ Guest

    My 2 cents

    Personally, I prefer to donate to individuals, rather than causes. It may not solve the bigger problems, but if I'm going to part with my money, I want to be sure that it is going to help someone directly.
  4. Dolphin

    Dolphin Senior Member

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    I think there may be more of that in the US than other "developed" countries where there is a better safety net.
  5. Dolphin

    Dolphin Senior Member

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    Yes, a lot of money can be raised if you get lots of people giving, especially if they set up some system where they automatically give [we use standing orders rather than direct debits - there is a slight difference; a direct debit might be used by a utility company where the amount would vary each month (or whatever period there is) while a standing order is for a set amount and the receiver can't take more].

    Most people prefer monthly rather than annual standing orders and they do tend to bring in more e.g. a lot of people would find giving $5 or $10 a month easier than $60 or $120 in one go.
  6. Dolphin

    Dolphin Senior Member

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    Also for me, this is somewhat different.

    I give to research partly (or perhaps mainly?) to help myself. I want more treatment options open to me, with the hope that I might improve if not fully get better.
    I also want the illness to be at the same level as other illnesses.

    So, to me, giving to research is to some extent anyway, a bit like spending money on a treatment. It's something that will hopefully help me in the long run.
    Of course, you end up also helping others which is a nice "side-effect".

    But it is frustrating if a lot of the others don't chip in - progress is much slower.
    When I got involved in Ireland, nobody was raising money for research (and it looks like that's the case in a lot of countries even now). It wasn't that everyone was poor - lots of people had money to spend on all sorts of treatments. But it was frustrating to me that people couldn't invest in research which might lead to more treatment options, as I say, as well as changing attitudes, etc.
  7. I was wondering who to give to for ME stuff and then I thought -- why not give to the one organisation that's helped me more than anything?

    And that would have to be... Phoenix Rising. Which is sort of supporting individuals that I respect and a charitable endeavour. I don't think I would be as well as I am right now were it not for the support, fun, laughs, sound advice and major education I've received from this board. More power to the Phoenix.

    Rachel xx
  8. Dolphin

    Dolphin Senior Member

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    Very good. Thanks, as people giving will help it continue.

    I also have given something previously.
  9. starryeyes

    starryeyes Senior Member

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    I'm happy to give to Phoenix Rising and the WPI right now. :Retro smile:

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