He knew the community had to start afresh. He wooed several charities to join a new CFS-ME research collaborative, and secured more than £1.6m from the Medical Research Council to fund five grants. The collaborative wants to raise the profile of CFS-ME research, talk to patients and professionals about priorities, and review the UK and international research landscape.
“Part of the problem has been that patients have been seeking a single treatment for a single problem, but, as the recent IOM report points out, these are complicated interactions in different patients,” Holgate says.
His approach sounds a lot like what Jason wants in the USA: a collective of medical practitioners, researchers, patient groups and funders working to strategically improve the evidence base for this disease. Unlike Jason’s emphasis on transparency and patient participation, however, the secret to the UK collaborative’s success, according to Holgate, is a membership charter that forbids harassment or abuse of researchers. In effect, patient groups are banned from whipping up a media frenzy over research findings.
The charter has already been tested a couple of times, says Holgate, who gave the aggressors a choice: apologise or leave. He’s even suggested that he’ll disband the collaborative completely if all parties don’t play by the rules.
“We set up the charter to protect researchers; anybody who joins us can’t abuse or upset that trust,” he says. “There is power in this to stop silly publicity which is quite destructive.”
