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In response to a collection of articles in The Times concerning ME/CFS and the announcement of the DecodeME study, I wrote the following unpublished letter:

“The recent funding announcement for a large genetic study into ME/CFS has been welcomed with delight, and even disbelief, by patients here in the UK and around the globe. Are we finally being taken seriously?! Funding of biomedical research into ME has been notoriously pitiful for many decades, considering both the terrible disease burden and economic impact of this multi-systemic, debilitating illness. In recent years, progress on this front has been largely confined to the US, though the per-patient funding level remains disproportionately low. The situation in the UK is perhaps even more dire, with the vast majority of grants, including the largest sums, allocated to research that has not attempted to understand the biomedical nature of ME/CFS, but has instead attempted to explain and treat the illness using a ‘biopsychosocial’ model. The resulting treatment approaches have been widely rejected by the patient community as ineffective and even harmful. We wait with bated breath to see if the recent funding announcement signals a much-needed paradigm shift the direction of ME/CFS research in the UK. We have already waited so long.”




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