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.
END ME/CFS ‘Severely Ill, Big Data’ Biomarkers Project
Charité Berlin’s EBV-related ME/CFS research
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.
Bateman Horne Center
Center for Infection and Immunity, Columbia University
Institute for Neuro-Immune Medicine at Nova South-Eastern University
Open Medicine Foundation
Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Initiative
Whittemore Peterson Institute
CURE-ME (includes the UK ME/CFS Biobank and post-mortem tissue bank and national CFS/ME Observatory)
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.
Associated New Zealand ME Society (ANZMES)