60 years of under-funded research

We all know that research into ME/CFS is meagre compared with other chronic illnesses, but the figures themselves are astounding, as we noticed when updating our Research Database recently. Looking at the ‘all time’ scientific publications to 31st December 2013, far more were for rheumatoid arthritis (115,605), type 2 diabetes (102,729) and MS (59,217) than for CFS and ME (which trail in at 6,310). However, the disparity is even greater when only publications with ‘hard’ data are taken into account (i.e. clinical trials, evaluation studies, and observational studies) – type 2 diabetes (12,721), rheumatoid arthritis (7,616), MS (3,625), and CFS and ME (a poor 464 over the past 60 years).

There are many reasons for this, as we frequently point out (see our overview Research challenges in ME/CFS). For instance, ME/CFS is not ‘sexy’ in scientific terms (encouraging established researchers into the field is one of the biggest problems we face), and there are few research groups in the world undertaking long-term programmes of research (which are needed to produce the ‘critical mass’ of biomedical data required). But the main problem is the low level of funding available across the world for basic and clinical research – something explored by Anne Ortegren in a very interesting essay on Health Rising, ‘The under financed ME/CFS research field: why it takes 20 years to get 1 year’s research done’.   

As Anne points out, figures from the US show that funding allocated for ME/CFS research is 20 times lower than that of comparable diseases, and “If ME/CFS was granted a level of funding on par with other high-impact diseases, we could quickly see very promising progress”. Anne’s essay is well worth reading, and she has suggestions about practical steps to take – from advocacy to crowd-funding to donating – with links to other relevant articles.

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