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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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the support of the research

Messages
23
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
 

Dolphin

Senior Member
Messages
17,567
Some ideas from Ireland

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
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).
 

Frank

Senior Member
Messages
850
Location
Europe
how can be organize money collections around the world? Is a very good question!
btw Welcome Michal
 

Dolphin

Senior Member
Messages
17,567
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.