Help me compile a list of research-funding ME/CFS charities in each country

[Sasha]

@serg1942 - how about Spain?

@Valentijn, anything in the Netherlands?

@Marco - France?

@heapsreal - Oz?

 

[Marco]

I'm not familiar with them but here's one :

Association Française du Syndrome de Fatigue Chronique

http://www.asso-sfc.org/

No idea how active they are in funding research but it's listed as one of the aims :

Participer et encourager grâce aux adhésions et aux dons, à des travaux de recherche

 

[Sasha]

I'm not familiar with them but here's one :

Association Française du Syndrome de Fatigue Chronique

http://www.asso-sfc.org/

No idea how active they are in funding research but it's listed as one of the aims :

Thanks, Marco - I'll take a look at that one.

 

[deleder2k]

I'm hoping some Canadians and Norwegians are going to help me out on that.

@deleder2k, can you help me? About research crowdfunds or research charities in Norway?

I've got a sudden mental blank about who lives in Canada...

Norway: ME-Forskning ( http://me-forskning.no )

 

[Sasha]

Thanks, @deleder2k!

 

[mango]

Sweden:
Riksföreningen för ME-patienter
http://www.rme.nu/

Info about how/where to donate is a bit further down on the first page. One of the options is an account dedicated to research only:

Forskningskonto
RME har upprättat ett särskilt konto för donationer till ME/CFS-forskning – bankgironummer 136-7481. RMEs styrelse kommer att fördela gåvor till detta konto till forskningsprojekt, som styrelsen bedömer som mest angelägna för RMEs medlemmar.

 

[Cheshire]

I'm not familiar with them but here's one :

Association Française du Syndrome de Fatigue Chronique

http://www.asso-sfc.org/

No idea how active they are in funding research but it's listed as one of the aims :

To my knowledge, they don't fund any research, and there's nearly n research in France.

 

[Snowdrop]

I only found one small study currently underway in Toronto (Canada):

http://webapps.cihr-irsc.gc.ca/cfdd/db_results_submit

 

[Sasha]

I only found one small study currently underway in Toronto (Canada):

http://webapps.cihr-irsc.gc.ca/cfdd/db_results_submit

Hi Snowdrop - that link doesn't work for me but it's not studies that I'm looking for - it's research charities that people can donate to.

 

[Snowdrop]

Oooops, sorry I'll have a look again.

 

[Snowdrop]

I did find this: http://www.nightingale.ca/index.php?target=support

but it is not at all clear as to what research they are funding so I don't like the lack of transparency.

 

[Sasha]

I did find this: http://www.nightingale.ca/index.php?target=support

but it is not at all clear as to what research they are funding so I don't like the lack of transparency.

Thanks, Snowdrop - a lot of charities have a general research fund but they usually summarise what they've donated to in the past, to help people decide whether to give. I don't see any such summary there and it's a good reminder that people need to do their own due diligence in relation to their giving.

 

[Effi]

@Sasha There's an organisation in Belgium called 'Wake-Up Call'. People can donate to a fund called 'Stop CFS'. The money is used towards biomedical research, patient advocacy and awareness campaigns. I have no idea how the money is distributed between those three, so I'm not sure if it can be on your list?

http://www.wakeupcallbeweging.be/wucb/word-donateur

hey @Sasha , did you see my previous post? (I can help you find info on the website if needed) I couldn't find anything else in Belgium (asked someone I know at Brussels uni if they have some sort of crowdfunding/fundraising department cause KDM is connected to Brussels uni, but I got no clear answer on that).

 

[Sasha]

hey @Sasha , did you see my previous post? (I can help you find info on the website if needed) I couldn't find anything else in Belgium (asked someone I know at Brussels uni if they have some sort of crowdfunding/fundraising department cause KDM is connected to Brussels uni, but I got no clear answer on that).

Thanks, Effi - somehow I missed your previous post! 'Wake Up Call' certainly counts - as long as a charity is supporting research as well as other stuff, I'm interested in it.

 

[Effi]

@Sasha In the Netherlands I found this one: http://www.me-cvs-stichting.nl/main.php?id=61 (similar to Wake Up Call they use their money towards research, awareness, etc. It doesn't specify if it's biomedical research though... Elsewhere on the website I read sth that makes me think they aren't necessarily against the psycho view on ME/CFS... hmm Sounds fishy right?)

 

[Sasha]

@Sasha In the Netherlands I found this one: http://www.me-cvs-stichting.nl/main.php?id=61 (similar to Wake Up Call they use their money towards research, awareness, etc. It doesn't specify if it's biomedical research though... Elsewhere on the website I read sth that makes me think they aren't necessarily against the psycho view on ME/CFS... hmm Sounds fishy right?)

@Valentijn - are you familiar with this one?

 

[Effi]

@Sasha just googling on I stumbled upon this Spanish website that looks pretty exciting: http://www.asssem.org
They are actually just now 300€ short of 12.000€ for a study about biomarkers. They prolonged the fundraising until the 30th of June. I found a previous thread that has all the info from @serg1942 http://forums.phoenixrising.me/inde...rmality-me-cfs-study-please-donate-now.36035/

 

[Sasha]

@Sasha just googling on I stumbled upon this Spanish website that looks pretty exciting: http://www.asssem.org
They are actually just now 300€ short of 12.000€ for a study about biomarkers. They prolonged the fundraising until the 30th of June. I found a previous thread that has all the info from @serg1942 http://forums.phoenixrising.me/inde...rmality-me-cfs-study-please-donate-now.36035/

Thanks, Effi (you're really getting into this! ). I've tagged Sergio and I'm hoping he'll get back to me.

 

[Effi]

Thanks, Effi (you're really getting into this! )

I needed some distraction tonight and this worked like a charm

 

[Sasha]

I needed some distraction tonight and this worked like a charm

The whole of Phoenix Rising serves exactly that purpose for me.