Queen Mary University of London, where the researchers are based, had spent more than £200,000 on legal costs in attempting to block an original ruling that had ordered them to release data they had gathered for the PACE clinical trial, which had assessed the effectiveness of exercise and cognitive behavioural therapy, or ‘the talking therapy’, on 641 CFS patients.
The £5m study concluded that both approaches could “moderately improve”, and that 22 per cent had been effectively cured—conclusions that some academics and patient groups questioned, as it suggested that CFS was ‘all in the mind’ rather than having a physiological aspect, as other research had discovered.
Despite the concerns, the findings were influential, and shaped treatment for CFS, and ME (myalgic encephalopathy), in the UK and the US.
The researchers refused to release the data because they claimed that it would compromise the anonymity of the participants—although a tribunal last week ruled that the data should be released, and was satisfied that safeguards were in place to protect their identities.
The action had been started by a CFS patient, Alem Matthees, under Freedom of Information legislation, who says the case had cost him greatly in time, energy and health, and as a result, he was now bed-ridden.