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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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Iis it up to us to find a cure?

Discussion in 'Action Alerts and Advocacy' started by knackers323, Feb 1, 2010.

  1. knackers323

    knackers323 Senior Member

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    Someone posted a thread the other day asking how many people world wide have "cfs"? and someone said there is an estimated 250 000 in the U.K alone. and it got me thinking that if our biggest hurdle to finding a cure is lack of funds then we may have to take this challenge on ourselves. Just think if we could get everyone world wide to donate say 10 dollars and if they could then get one family member, friend or someone else who has been affected by this illness or witnessed its effects then the money would add up pretty quick.

    So I was thinking, has anything like this been attempted?
  2. Tammie

    Tammie Senior Member

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    There is something called the pocket money fund that is based around this exact idea.

    ....they give stats on their website, and I don't remember them off hand, but the amt that could be raised if everyone of us and one other person we know were to each give ten dollars (our pocket money) was astounding

    .....I hope that posting the site on here is not in violation of any PR rules.....if it is the monitors can feel free to remove this post .....if it's ok to put it here, though, it is:

    http://www.pocketmoneyfund.org/

    also, though it does not conduct research, PR itself is obviously a great source of info about the latest research, as well as other info and support, and it also needs funds to keep going, so giving a bit to PR would also help many if us out quite a bit
  3. knackers323

    knackers323 Senior Member

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    hi Tammie, thanks for the reply. the site is great. do you know how long it has been running for? we need to get the word out about it somehow.
  4. Dolphin

    Dolphin Senior Member

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    Just over 2 months/less than 3 months: ref:
    http://listserv.nodak.edu/cgi-bin/w...3&X=55DB5141639257FA98&Y=tomkindlon@gmail.com

    Yes, if one or more person had the time, I'd recommend writing to groups asking them to link to it. Not just national groups, but local groups. They might also mention it in E-letters they send out to members and/or in their newsletters.

    If you can't find lists of groups, I can probably point you in some directions. The basic trick is to find a few, put them into Google together and then you'll find where they are listed together and then you'll find other lists.

    I suggested it to somebody before Christmas who I know donates monthly themselves but they have not got around to it.
    Of course, if more than one person writes to the same group, it would not be the end of the world.

    Bloggers and other sites could also link to the site.

    Unfortunately, I have a lot of commitments in the ME world so can't do it (I have done something similar, contacting groups, for other things in the past e.g. a standing order appeal for ME Research UK, Jeremy Bearman's matching funds appeal, etc).
  5. Min

    Min Senior Member

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    In the UK there's the Just Four Quid campaign, & we can choose to give just to ME Research UK:


    http://justfourquid.com/
  6. Dolphin

    Dolphin Senior Member

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    I'm not in the UK but I find some of the money saving tips good.

    This is another one that would be worth highlighting "around the internet".
  7. Dolphin

    Dolphin Senior Member

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    If it is not up to us to find a cure, whose responsibility do people think it is?

    To answer your question, if it is not up to us, who is it up to?
    I don't particularly think it is government/government ministers' responsibility to come up with a cure for the thousands of conditions that are out there. There main job is to run health services. They then have budgets (which are usually only a tiny fraction of health expenditure) to research medical and health matters. Some of this goes on basic biological research, some of it goes on general health issues and then some of it on specific illnesses.

    Also governments are generally kept at arms length from most health research bodies (the US is a little different) - decisions are made on scientific merit, etc. Although there has been problems with this, I'm not convinced it is governments who are to blame - I think it is biased doctors etc associated with the research bodies.

    So anyway even if we were getting a fair amount of money, in most countries it still would not be that much. The ME/CFS population in that country could easily raise more. Of course, there's no harm getting money from whereever you can get it but it is frustrating that so few people in the ME/CFS community donate and/or try to raise money (or encourage their family/friends to donate and/or raise money).

    One country where one can get big money for specific illnesses is the US. But one needs researchers to be making grant applications. So one needs to fund lots of smaller studies so researchers have data which helps them access larger grants. Unfortunately, not as much money is being raised privately as it could be to fund smaller studies which would support a lot of researchers in the area.
  8. knackers323

    knackers323 Senior Member

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    thanks for the replys guys. yes I really think that if we ever want to be well we have to raise the money. no one else is gunna do it for us, that has been proven. we have to help ourselves. come on people every little bit helps. we cant just sit here and wait or we will end up losing our whole lives. I see that 160 odd people have read this thread, but I wonder how many people have taken any action on it. its up to us people.
  9. Tammie

    Tammie Senior Member

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    as far as I know, it has only been around for a few months.....I found out about it via another CFS/FM bulletin board, and I have posted a link to it on my facebook page along with more of an explanation

    I know that they are planning to have an online store too.....I think that if that includes things like t-shirts, bumper stickers, etc that will also help tp spread the word about the fund

    basically any place that people can think of to mention it is good.....b boards, fb, twitter, blogs, email, etc....in person, too, of course if people feel comfortable doing that

    I know it is hard for people to ask for money.....I tend to have a really difficult time with this, but I think this is so important, and every little bit helps - it's not like anyone needs to ask anyone else to give a ton.....I did spend awhile deciding what to write to go along with it, though, bc it is hard to ask......anyway, I have to get off the computer now (starting to feel real sick and cannot see straight rt now), but if I remember and have the energy to do so, I will post on here what I put with my facebook page and anyone who wants to is more than welcome to copy it and use it

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