One of the most important things that we can do as ME/CFS patients is to donate to the charities that carry out biomedical research into the disease.
Governments are notorious for their decades of extreme underfunding of research into ME/CFS. But even if they increase their spend, for most diseases, it’s research charities who foot the bill for most research.
So please join in and give! With over 17 million patients worldwide, and our friends and families, if we each give even a small amount we can generate huge amounts of cash.
ME/CFS research projects
As well as many excellent research charities to give to, crowdfunding — fundraising for specific projects — has been a big success in ME/CFS. Over $1.6 million (£1 million, €1.4 million) was raised in 2013 and 2014 in crowdfunds in Europe, the US and the UK for projects ranging from clinical trials to documentaries.
US
END ME/CFS ‘Severely Ill, Big Data’ Biomarkers Project
UK
Invest in ME UK rituximab trial and B-cell research
Invest in ME UK gut microbiota project
Germany
Charité Berlin’s EBV-related ME/CFS research
Research groups
The research groups below run ME/CFS research programmes (more than a single project or line of research) and it’s possible to donate directly to them. For those groups that research several diseases, make sure it’s their ME/CFS research that you’re giving to.
US
Bateman Horne Center
Center for Infection and Immunity, Columbia University
END ME/CFS
Institute for Neuro-Immune Medicine at Nova South-Eastern University
Open Medicine Foundation
Simmaron Research
Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Initiative
Whittemore Peterson Institute
UK
CURE-ME (includes the UK ME/CFS Biobank and post-mortem tissue bank and national CFS/ME Observatory)
Australia
National Centre for Neuroimmunology and Emerging Diseases
Charities
Some charities listed below not only fund research but also provide support and education. If you only want to donate to research, be sure that you make your wishes known.
At the time of compiling this list, all but one of the charities listed below supported biomedical research only. Treating ME/CFS as though it’s a psychological disorder has been extremely damaging for patients and huge amounts of government money have been wasted on psychosocial research. A very few ME/CFS charities fail to reject the psychosocial view of the disease and it’s important to know what you’re donating to. If in doubt, ask the charity.
UK
Invest in ME
ME Association (Ramsay Research Fund)
ME Research UK
Action for ME (note: research includes social and economic research as well as biomedical)
Belgium
Wake-Up Call
Canada
Nightingale Research Foundation
Ireland
Irish ME/CFS Association
Irish ME Trust
New Zealand
Associated New Zealand ME Society (ANZMES)
Norway
ME-Forskning