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Help with raising funds for Prof. Lipkin's study

Discussion in 'Fundraising' started by vli, Sep 11, 2013.

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How much are you willing to give to a fund set up to help Prof Ian Lipkin with his pathogen study?

  1. $10 one-off

    8.8%
  2. $20 one-off

    11.8%
  3. Over $20

    58.8%
  4. $10 or $20 a month or some such arrangement

    20.6%
  1. Nielk

    Nielk

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    Personally though, I think that big money like that - quickly can only come from the government. We need a concerted effort from all the various ME/CFS patient groups and advocates to come together on this to petition the government for adequate funding. The groups might have differences but with this point I think that we can all agree - the government is failing us!!!
    beaker, vli and Sparrowhawk like this.
  2. vli

    vli

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    Dolphin likes this.
  3. Nielk

    Nielk

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    vli and Dolphin like this.
  4. Dolphin

    Dolphin Senior Member

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    You could be right in this case, as it may be more expensive than most studies, although it would be good to know what sort of money is involved.
    I'd like to see people trying to raise money continuously around the world and then charities might be able to step in if researchers can't get funding through grants, as is likely to sometimes be the case even if we get a "fair" chunk (only a percentage of grants will get passed).
    Sasha likes this.
  5. vli

    vli

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    I agree with you completely actually. But it's depressing to remember that a) lipkin wouldn't even be DOING this study if not for the CFI in the first place--not federal money and b) people here've reported being sick for two decades or more and seen no successes with our disease getting more gov funding. Why is this????? Perhaps I should ask more precisely: is it because we haven't had a solid project that tries to find the cause of our illness to focus our efforts on , UNTIL NOW??? I think one major downfall for efforts to persuade (even with my zero experience with it) is that 'til now we haven't had a single high profile researcher to get behind and shame the gov into giving us funds, so to speak.
  6. Dolphin

    Dolphin Senior Member

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    It's a difficult question to answer.

    There has been some lobbying in the US in the past and the CAA even paid a lobbyist (I think a low six figure sum each year) for maybe a decade?
    They also had lobby days where they would have a training day the day before and then a few dozen people would go around politicians in Washington DC.
    I also recall them co-ordinating e-mail campaigns.

    The CAA have moved away from lobbying in the last few years.

    I also recall one or two photos of protests in Washington DC around the mid-1990s I think it was.
    vli likes this.
  7. vli

    vli

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    Ok, thanks for that Dolphin, I guess my knowledge of those activities is a bit hazy since I was in high school in 1999 and didn't get sick until I was 19.
  8. Dolphin

    Dolphin Senior Member

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    I think most people don't know much about the politics of the illness (what lobbying might have been done, etc.) from before they got diagnosed. It's not a high-profile illness.

    I got ill in 1989 and diagnosed back in 1994 (and also read some old stuff from before that (1994), mainly relating to stuff in the Great Britain and Ireland, but there are some unusual circumstances in my case in terms of why I'd read back).

    However, I didn't follow US stuff that closely in the 1990s. At that stage, my mum did most of the reading of stuff that came in e.g. CAA magazine. Most of what I know from the US then was the internet. But I didn't start following much in the US on the internet till around 1998 (so I'm not an expert on the US in the 1990s, although have picked up some information from discussions over the years).

    CFSCC/CFSAC meetings were not broadcast till 2008 or 2009 - I think few people would have a good knowledge of what happened at them before that.
  9. aimossy

    aimossy Senior Member

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    Right so I had to do something, donated to phoenix rising, health rising and my own community society and the research here we have supported. I wanted to make a donation to invest in ME today and now I am irrationally annoyed that something is up with the server and wont find the page on the net. have no idea why its made me feel so annoyed! lol

    just want to say,im learning and learning from senior members,its great and thankyou, you are all full of knowledge and info and support.thanks:)
    Nielk, rosie26, Sasha and 2 others like this.
  10. Dolphin

    Dolphin Senior Member

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    Thanks aimossy. :thumbsup:
  11. Sasha

    Sasha Fine, thank you

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    Good for you! If everyone did what you're doing, we'd have millions. I hope other people will follow your example.:thumbsup:


    If it's the IiME Rituximab trial you want to donate to, here's the Justgiving link:

    https://www.justgiving.com/ritux4meuk
  12. aimossy

    aimossy Senior Member

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    Once ive done a donation to invest in ME ill check that one out properly sasha thankyou.
    ill bloody donate to anything that is quality research and not just once!. time for action now while research is finally hotting up.i just gotta learn lots from you guys to get myself in the know of whats happening everywhere and pass it on.:)

    You know that is just about perfect! you have a thread on the forum here that has info about some specific studies, and then links at the bottom of the info that sends you to the place you can donate to. just have it all real obvious/easy to come across.
    abporter, Dolphin and Sasha like this.
  13. Sasha

    Sasha Fine, thank you

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    Maybe I confused you with my abbreviation! IiME = Invest in ME. That link is to donate specifically to the UK Rituximab trial. This link:

    https://www.justgiving.com/investinm-e

    takes you to all their pages on Justgiving, which will include some involving their general fund. I like to donate to strangers' fundraising pages sometimes, just for fun - they have quite a few people there fundraising for them on their individual pages.

    :thumbsup::thumbsup::thumbsup:

    Don't be too hard on yourself - I'd never noticed that! o_O
  14. xchocoholic

    xchocoholic Senior Member

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    Are you kidding me ? Let our governments divert the monies going to pysch research
    to this study.

    Or better yet, teach them how to run a study using valid criteria.

    Why encourage this type of wasteful spending ?

    edited to say our governments not them. Lol. I use the term them for government
    without even thinking others won't know who they are.
  15. aimossy

    aimossy Senior Member

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    I will check the invest in me pages out properly sasha, thought money to them would go over a few areas of research.not just rituximab.Thanks for the info and tips its helpful cos I need to troll the sight properly! I do have problems taking it all in and miss stuff which im sure most struggle with. new learning takes ages to sink in.
    xchocoholic, im not sure what you are referring to but I wont be donating monies to psych research(especially not cbt or get) You may have been referring to some other posts and not mine or sasha
    I am yet to come across any good neuro psych cognitive testing papers as of yet tho which I would find interesting.
    thanks
    Sasha likes this.
  16. Dolphin

    Dolphin Senior Member

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    One does have the option of specifically giving money for the Rituximab trial pot. But I'm sure they appreciate unspecified donations also. They are an all-volunteer organisation.
    aimossy likes this.
  17. xchocoholic

    xchocoholic Senior Member

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    Our governments keep wasting money on cfs psych studies. And they're just now
    acknowledging that cfs is an umbrella term.

    So why not
    expect them to get a handle on this ? This has gone on long enough.
    aimossy likes this.
  18. Dolphin

    Dolphin Senior Member

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    I think there's a difference between the US and some other countries.

    In some countries, most of government-funded research is psych studies.

    In the US, the percentage is much smaller.

    Also, Leonard Jason, for example, is a recipient of some of this research money.

    My guess is that in a lot of conditions, psych studies get a percentage.
  19. xchocoholic

    xchocoholic Senior Member

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    But the real cfs/me isn't a psychological illness so the money is being wasted.

    Sorry to sound argumentative. It's the system that I'm frustrated with.
    aimossy and vli like this.
  20. aimossy

    aimossy Senior Member

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    I pretty much like all of what invest in me are doing with their research funding and what the whole organisation is up to and made happen.its a go for me to put some donations into their pots.:)
    Sasha and Dolphin like this.

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