The UK based POLICY CHANGE NOW CAMPAIGN was inspired by the successful US Time for Action campaign and originally ran for two weeks, 30th October – 12th November 2010.
The original Policy Change Now message:
“Stop allowing policy to support the refuted psychiatric model of ME/CFS, which presumes that ME/CFS has no organic basis and is therefore contradictory to current science and research on XMRV and other viruses. Pledge to make a definitive policy change now. Patients and their families are waiting.”
Patients, their families and friends sent this message to:
Rt Hon. Andrew Lansley, Secretary of State for Health,
Sir John Savill, Chief Executive Officer of the Medical Research Council,
& Dame Sally Davies, Chief Medical Officer of the Medical Research Council.
They did this day every day for a fortnight, in total around 2000 emails were sent. A response was then received from each or the UK health officials contacted.
Phase II of the Policy Change Now campaign was launched on the 20th of November 2010. This time each participant was requested to send a more detailed email to each official just once.
The replies to the Phase II emails on behalf of Dame Sally Davies and Sir John Savill acting CMO and CEO of the Medical Research Council respectively were disappointing but the response received from Rt Hon. Andrew Lansley, Secretary of State for Health’s office was much more informative.
Notable snippets with regards to XMRV: “The stark differences in prevalence of apparent infection seen globally.. are unlikely to be solely the result of different methodologies.”
and “Officials are assured that detection of the XMRV genome based on amplification of the number of copies present (PCR) is widely regarded as the best and most sensitive method available for this purpose.”