The ME/CFS Pocket Money Research Fund

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, Nov 26, 2009.

  1. QuayMan

    QuayMan Member

    [I'm not involved in this myself but I did donate. I've talked to Dan a couple of times on the phone. I think we have more power in our numbers that we could make better use of]

    (Please re-post)

    If nothing else, we have learned that our governmental agencies will not
    soon provide the money required for desperately needed research consistent
    to the prevalence of our disease. We also know that it can take a year or
    more for traditional funding sources to go through the grant writing and
    acceptance procedures before such research can begin.

    Working together, we can dramatically increase ME/CFS research to more
    quickly ease the suffering we endure. This is precisely what the ME/CFS
    Pocket Money Research Fund ( is designed to do.

    It's a fund which seeks to unite we who are isolated by our disease. We
    whose needs have been ignored by all but a few of our physicians,
    governmental agencies and far too many of our family and friends. We, who
    because of our illness, can barely, if at all, work to provide for ourselves
    and our families.

    We must, in spite of our reduced financial capacity, dig deeper and
    sacrifice a little more, to help ourselves.

    We can, however, take heart in our numbers.

    The most commonly accepted prevalence rate for ME/CFS used by researchers
    and the IACFS is 0.42% of the general population. Applied to just Australia,
    Canada, Europe, New Zealand and the United States that's over 5,000,000
    afflicted individuals. Sadly, less than one in five of us has been
    diagnosed. However, if we 853,000 who know we have the disease join together
    in common cause, we have real financial strength.

    If each of us were to donate just the local equivalent of $10 to the ME/CFS
    Pocket Money Research Fund, $8,534,010 would be raised.

    And, if we push just a little harder . . . and each of us get just one
    friend or relative to contribute a like amount, $17,068,020 would be raised.
    "That's real money which can make a real difference in a big hurry"
    according to Dr. Nancy Klimas, M.D.

    Whatever pocket money you can bring yourself to spare, in whatever currency,
    will help us help ourselves. Whatever effort, you can make to urge others to
    join us, will help us help ourselves.

    Your contributions to the fund will also bring us closer to forming not just
    a worldwide community, but a growing worldwide presence whose numbers our
    governmental agencies will soon no longer be able to ignore.

    Please, take a moment right now . . . and look into your pocket or purse.
    Count out the money and consider how much you can spare to help yourself
    overcome the ravages of our disease you endure. Then make a donation via
    PayPal to the ME/CFS Pocket Money Fund at:


    If you prefer to write a check in your local currency, make the check
    payable to The ME/CFS Pocket Money Research Fund and mail it to: The ME/CFS
    Pocket Money Fund, c/o Seacoast National Bank, 3001 PGA Boulevard, Palm
    Beach Gardens, Florida 33410 USA

    All donors are individually recognized by country on the fund's website. To
    learn more about the fund and how your donation will be used, and by whom,
    go to

    You can also help by forwarding this message to everyone you know who has
    the your disease or may be in a position to help. To learn more about what
    else you can do to support the fund in your local area, check out, and sign
    up for, the Ambassador program

    You can also take one other very important action to help us help ourselves
    . . . forward this email to every organization or website you know of and/or
    subscribe to and ask them to post the fully activated version of this image
    on their website. Those that advise us that they have done so, will be
    recognized as Sponsors on the fund's website.

    The computer code needed to post the fully activated 120 X 240 pixel image
    (which can be viewed at Other sizes are
    available upon request.:

    width="120" height="259" border="0" usemap="#Map" />
    <map name="Map" id="Map">
    <area shape="rect" coords="-117,-133,120,192"
    4> &hosted_button_id=9831994" target="_blank" />
    <area shape="rect" coords="0,191,214,333"
    href="" target="_blank" />

    Together, we can change the world.

    Dan Moricoli

  2. AuntTammie

    AuntTammie New Member

    I may have missed this as I just quickly skimmed the info, but if people contribute to this fund, where exactly is the money going to go? I mean, which researchers and what research specifically? I think it's a great idea, but as broke as I am, I would really want to know who is getting the money before I would contribute.
  3. QuayMan

    QuayMan Member

    Good question, AuntTammie. Maybe he should have included more info in the E-mail. Anyway here is the answer. Looks like a good scientific committee to me.

    How will the money be spent? By the very people who know the most about the most promising research initiatives in the world.

    Every dollar raised by the ME/CFS Research Fund will be distributed by our Scientific Committee . A world renown group of the leading scientists in the study of ME/CFS consisting of Dr. Jonathan Kerr of The United Kingdom, Dr. Nancy Klimas, of the United States, Dr. John Gow of Scotland, Dr. Lucinda Bateman of the United States and Dr. Derek Enlander of Northern Ireland.

    Each member of our scientific committee has graciously donated their time to this desperately needed campaign and serves without compensation. Every six months they will decide on the research projects to be supported by the fund. There are, however, strict limitations on the amount of funding they can give to their own projects. For more information, click HERE .

    Allocations made by the scientific committee will be reported herein along with periodic updates on each funded project's respective progress.
  4. quanked

    quanked Member

    this is the website that talks about who decides who gets money and how much


    the funds can be given to any research project around the world.

    i do not know. i think i want something more local and focused on xmrv right now. i want it ruled in or ruled out.
    [This Message was Edited on 11/26/2009]
  5. QuayMan

    QuayMan Member

    People could give to WPI if they want to support XMRV research I imagine.

    I think there will be lots of XMRV research - which is good. I've just posted a post on a study that ME Research UK and the Irish ME Trust did. I'm happy I was involved in raising money for ME Research UK over the years - if people hadn't have given/raised the money, they couldn't have funded the study, it's a simple as that. I know lots of people in Ireland who haven't given anything. And others who haven't given anything in years and years. Get the impression it's the same in most countries.

    So many people affected haven't been giving to research. I think we wouldn't have had to had to put up with so much psychobabble if more people had given something or encouraged their family/relatives to give or tried to raise money in some way. I know how much people spend on treatments and yet somehow they say they have no money to give to research. Anyway we have this now.

    Fingers crossed this fund helps tap into the numbers out there. And my impression is most or all of the committee are into XMRV. I know that Dr Enlander is sending samples to Dr Kerr to test for XMRV. And I've heard around the time of the CFSAC meeting that Dr. Klimas and Bateman were interested. So if there is a lack of money in the XMRV area for particular studies, I'm sure they'll keep it in mind. But if there's little money in the pot, they will do nothing. And the whole thing might stop if the scientific committee had no money to give out, which would be a pity. As they say, a lot of people giving $10 can raise a lot of money.

    Well done to Dan and his team for organising this.
    [This Message was Edited on 11/26/2009]
  6. AuntTammie

    AuntTammie New Member

    Thanks for posting more about this. I have heard about this committee - just didn't realize they would be deciding where the money from this fund would go.....they are definitely a good grp to be making decisions about this and very much worth thanks again. I hope that enough people contribute to make a difference. I am on an extremely limited budget, but I could certainly give $10.
  7. QuayMan

    QuayMan Member

  8. AuntTammie

    AuntTammie New Member

  9. mbofov

    mbofov Active Member

    Thanks for posting. You also make an excellent point about how much we spend on treatment, but can't spend some on research as well. I don't hesitate to buy a $20 bottle of something or other if it might help me, but hate spending money otherwise .... because I do spend so frigging much on trying to get well ... anyways, this is very good. Thankyou.

  10. QuayMan

    QuayMan Member

    Please link to if one can. There is no particular deadline on this but if it doesn't get enough support in the first 12 months, I could see it falling through. If we plant enough links around the internet, hopefully some of the people out there will give - it might not even be patients but also others.

    At the bottom of the initial message, there is also instructions about how to use the fancy logo on your own site.

    (I have no financial interest in the project except that I'm a patient who could benefit from research progress)
  11. QuayMan

    QuayMan Member

  12. AuntTammie

    AuntTammie New Member

    I normally have a very, very hard time asking people to contribute money to anything (no problem advocating in other ways, but lots of trouble asking for money).....anyway, I think that this fund is a really great idea and I decided to just deal with my issues with asking

    ......anyway, I also thought that others might also have a hard time asking, so I thought that if anyone wants to use any/all of what I wrote about this, they are more than welcome (I hope that doesn't sound conceited or anything - not saying that what I wrote is so great, just offering in case anyone wants help with this) far I have posted it on facebook, but plan to also ask via email, in person, etc......

    This is what I posted about this on Facebook:

    I normally really hate - no hate is not a strong enough word- loathe, despise, detest, etc- asking people to contribute money to anything, no matter how worthwhile it may be. However, I am asking in this case, because ME/CFS has pretty much taken my life away from me and from many others, and this is a chance to do something about it....and to even do something by contributing very, very little.

    This is a way to raise much needed money for research for CFS/MS. They are asking for people to contribute whatever they might have in their "pockets" - not large amounts, necessarily (though of course that would be great, too). The idea is that if most of the people with CFS/ME and even one more person somehow connected to each of them contributes even $10, a total of around $17,000,000 could be raised. Yes, you read that rt - $17,000,000. (Even less than $10 per person would help, though - no amount is too small. I can't stress that enough. It really does add up.)

    The scientists who are deciding which researchers to support with this fund are a grp who have been working hard to research ME/CFS for a long time and have made substantial research gains. However, this is not set up to fund their own research. They set limits on that to avoid a conflict of interest. They are hoping to spread this among many top researchers, and they are a grp that is very qualified to decide who can best utilize such funds.

    Considering how very poorly our govt has treated ME/CFS for the last 20 yrs and has failed to make much of any headway (actually the CDC has caused a lot of harm, and suppressed a lot of research and education, but that is another story), and considering that in only two yrs a privately funded grp (The Whittemore-Peterson Institute) has managed to find a new retrovirus associated with ME/CFS, it is quite feasible that something like this "pocket fund" could do a ton of good. I am asking that you please consider giving something, anything, to this fund.....and if you honestly feel that there is nothing you can give, then please pray for the fund, the patients, the research and ultimately for better treatments for ME/CFS.

    Thank you!
  13. AuntTammie

    AuntTammie New Member

    on the fund website, it says that they are going to soon have an online store with pocketmoneyfund products to also help with raising money

    though obviously buying something on there would mean that some of the money would go to the production of the item bought, it would also help to further advertise the in the long run, it might bring in even more funding

    and it would make it easier for people like me who find it hard to ask for fund raising money.....wearing a T-shirt or putting a bumper sticker on a car sort of does the asking for us (I think that those look like the types of things they might have in the store)

  14. AuntTammie

    AuntTammie New Member

    please please please spread the word about this and if you can donate ANYthing, please do
  15. QuayMan

    QuayMan Member

    That's brilliant, AuntTammie.
    Useful to see what other people write.

    Hopefully other people can do this.

    With FaceBook, Bebo, other social media sites, even Twitter, one can contact people with a message in a less direct way than an E-mail. Given the number of people with ME/CFS on the internet, we could get lots and lots of people plugging it ...
  16. QuayMan

    QuayMan Member

  17. AuntTammie

    AuntTammie New Member

    Yeah, I am really hoping that people will utilize facebook, etc for this, as well as asking for contributions in more direct ways (if they feel comfortable doing so)

    I am not really a FB fan, in general, but I have found that it is a great way to spread awareness
  18. QuayMan

    QuayMan Member

  19. QuayMan

    QuayMan Member

  20. QuayMan

    QuayMan Member

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