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August 8th - What is the one thing about suffering with severe ME that the world needs to know?
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the support of the research

Discussion in 'General ME/CFS News' started by michal, Feb 10, 2010.

  1. michal

    michal

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    Hi

    I would like to adress you with one initiative because I think this web site visite a lot of people from many countries. I also suffer from CFS. I am already thinking for a long time, how could we (the patients) improve our situation by ourself. I am reading everywhere that the main problem why there were not a big progress in CFS untill now is that there is only a small financial support of CFS research. I know that maybe the countries like U.S, UK and the patients from these countries support the CFS research but I think that the other countries not too much (sorry, if I am wrong). Thats why I was thinking if we wouldnt try to do an appeal or something like the day of CFS and try to organize in each country the public collection for the support of CFS research.
    At this moment I am trying to organize the public collection in my country (Slovak republic). Its a bit difficult because we dont have even a CFS organisation. So I just contacted some organisations against cancer if they could organize this public collection but untill now all of them refused it :-(. I would like to organize this world wide initiative in each country but I need more ideas how to do it.
    So I would like to ask you, if you think that my idea can work (if you will write me a critique or that its not a good idea dont worry, its not good to organize something without effect).
    If you like my idea, I think on the beggining there are 2 questions to manage:
    1. How could we organize the public collections in most possible countries in all over the world? (maybe it could be organize in each coutry by a domestic organisation? What to do in a country where is no CFS organisation?)
    2.Which research or research organisations would we support with the money? It should be efficient research.

    Ok, it was just an idea. I think this is our only chance to make the things faster. I will be happy for any answer.

    Bye
    Michal
     
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    I think there is already a CFS awareness day in May.

    Tina
     
  3. Dolphin

    Dolphin Senior Member

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    Some ideas from Ireland

    I'm going to bed now but you might find this of interest:
    "Report on a (very successful) ME Awareness Week campaign in Ireland (8th - 14th May, 2000)"
    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0103A&L=CO-CURE&P=R142&I=-3&X=160C3706E3210FCF4E&Y

    I think ME Research UK http://www.meresearch.org.uk/ would be a good research charity to support. They get support from lots of countries and fund research in quite a lot of countries (I know they are funding research in Belgium, Sweden and Canada as well as the UK).
     
  4. Frank

    Frank Senior Member

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    Europe
    how can be organize money collections around the world? Is a very good question!
    btw Welcome Michal
     
  5. Dolphin

    Dolphin Senior Member

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    Blue Ribbons are useful to raise money

    I'm not sure if people have followed the link I posted
    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0103A&L=CO-CURE&P=R142&I=-3&X=160C3706E3210FCF4E&Y
    but one of the points I made is that blue ribbons are a good way to raise money.

    Blue Ribbons are:
    (i) Relatively cheap to buy (around 6p in UK money)
    (ii) Light so cheap to post
    (iii) Dont go out-of-date from one year to the next.

    If people wear them, people can ask them what they are for and the person may start talking about ME/CFS so good for awareness.

    Probably in countries like the Slovak Republic you will need to do some awareness raising also. The link mentions this. After the awareness-raising now, ME/CFS is better known that some other conditions e.g. lupus/SLE.
     

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