• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

charities designated to ME and other poorly researched diseases?

Aerose91

Senior Member
Messages
1,398
Are there any charities or institutions that accept donations who research and advocate for unknown diseases such as ME?

Whenever my birthday or holidays come up I would much prefer people donate to a fund rather than give me stuff. An organisation like this is something I would like to contribute to
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Are there any charities or institutions that accept donations who research and advocate for unknown diseases such as ME?

Whenever my birthday or holidays come up I would much prefer people donate to a fund rather than give me stuff. An organisation like this is something I would like to contribute to

That's very generous of you! There are several good projects and charities specifically for ME, such as the one referred to in my signature. Do you have a preference in terms of country? Individual research projects vs support services to patients vs educating people about the disease? If you've got a lot of friends and relatives giving, they might prefer one in your own country (which might also get the charity some tax advantage on the donation).

What would be your ideal thing to give to?
 

Aerose91

Senior Member
Messages
1,398
Thanks, Sasha.

Personally I have no preference of what country it's in, we're all people, right? However for other people donating that may be a consideration. I think my preference would be something that
A) is part of progressing research and treatment for these type of diseases and
B) is involved in advocacy of them being real and having these things legitimized to places such as social security and insurance companies.

I'm always open to whatever is out there, though. I like to look into places before I advocate for them. It doesn't have to be a big organisation, either, though
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Thanks, Sasha.

Personally I have no preference of what country it's in, we're all people, right? However for other people donating that may be a consideration. I think my preference would be something that
A) is part of progressing research and treatment for these type of diseases and
B) is involved in advocacy of them being real and having these things legitimized to places such as social security and insurance companies.

I'm always open to whatever is out there, though. I like to look into places before I advocate for them. It doesn't have to be a big organisation, either, though

Here's a quick list of the most popular ones - research, of course, has international consequences so it doesn't matter much where you're donating from.

With Solve, you donate to a general fund which (correct me if I'm wrong, US people) is for research, not advocacy. Historically, Solve in its original form was heavily criticised for advocacy that was seen as damaging to PWME.

Specific research projects

Microbe Discovery Project
http://www.microbediscovery.org/

CFS Research Center
http://cfsresearchcenter.org/

Open Medicine Institute (you'll need to specify your project if you want - they have several)
http://openmedicineinstitute.org/research-initiatives/mecfs-merit/

UK Rituximab trial
http://www.ukrituximabtrial.org/

UK microbiome project
http://www.investinme.org/LDR UK Gut Microbiota.htm

I'm afraid I'm short on energy today so I won't properly list the more general research funds but just mention some - the (UK) ME Association's Ramsay Research Fund, ME Research UK, Solve (as you mentioned). Maybe others can step in with others outside the UK and with support charities.

Personally, I like to give to the research projects - I'm currently supporting the one in my signature.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Like Min and Sasha, I'm in the UK, so I've probably got a personal bias towards UK organisations. My favourite charities, in terms of those that specifically support, promote and fund biomedical research, have always been Invest in ME and ME Research UK. I think they've both got an excellent track record. Like sasha, I'm also currently supporting the Lipkin microbe discovery project but that's only active until the end of the year. Also, I agree with sasha that the open medicine institute is a worthy organisation, and if I was looking for a US organisation to donate to, then I might choose them.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Like Min and Sasha, I'm in the UK, so I've probably got a personal bias towards UK organisations. My favourite charities, in terms of those that specifically support, promote and fund biomedical research, have always been Invest in ME and ME Research UK. I think they've both got an excellent track record. Like sasha, I'm also currently supporting the Lipkin microbe discovery project but that's only active until the end of the year. Also, I agree with sasha that the open medicine institute is a worthy organisation, and if I was looking for a US organisation to donate to, then I might choose them.

I'd agree with all that but I'd also like to plug the new CFS Research Centre, led by a world-famous, top-flight geneticist whose son has severe ME (and is a member of this forum).

I forgot to mention the MEA's fundraising for a UK biobank:

http://www.meassociation.org.uk/201...biobank-could-you-be-a-sponsor-of-our-appeal/

Personally, I like donating to specific projects like that rather than into a general fund.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I'd agree with all that but I'd also like to plug the new CFS Research Centre, led by a world-famous, top-flight geneticist whose son has severe ME (and is a member of this forum).
Ah, yes, that's run by Ron Davis, isn't it. I agree that this looks like a very exciting and promising research outfit.
http://cfsresearchcenter.org/index.php?option=com_k2&view=item&id=69:about-us&Itemid=545

And the ME Association's Ramsay fund, which you mentioned, is an ongoing fund designed to fund biomedical research that I'd be happy to donate to:
http://www.meassociation.org.uk/2007/05/the-mearamsay-research-fund-guide-to-policy/
 

Aerose91

Senior Member
Messages
1,398
These are all excellent, thanks so much guys. Isn't the UK far ahead of the US when it comes to ME research? Or Europe as a whole?
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
These are all excellent, thanks so much guys. Isn't the UK far ahead of the US when it comes to ME research? Or Europe as a whole?

I'd say it was an international effort. I don't know that I'd put any particular country ahead - the US, UK, Oz, and particular European countries - notably Norway, Spain and Germany - have all done some good stuff in the last few years and they're working together and sharing knowledge on many projects.