The Prime Minister's Office responded on July 1 to a petition signed by almost 5,000 people at the Number 10 website which called for attendance at the highest levels at this year's Invest in ME international research conference, held in Westminster on May 29. Unusually, the response started with a bit of an apology…
"Thank you for your e-petition. I apologise for the delay in replying. Ministers and the Chief Medical Officer receive a large number of invitations from stakeholders, pressure groups and individuals to attend meetings and events. Regrettably, it is not possible to attend the vast majority of these events.
"The Medical Research Council is an independent organisation and it would therefore not be appropriate for the Prime Minister to instruct it.
"More generally, the Government recognises chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) as a debilitating and distressing condition. CFS/ME is a chronic illness and health and social care professionals should manage it as such.
"The Department of Health funds research for health policy development, clinical and applied health research in the NHS, and the NHS costs incurred in supporting research funded by other bodies such as the research councils and charities. The Department’s research budget for 2009/10 is £896million. Details of individual NHS-based projects, including some concerned with CFS/ME, are on the UK Clinical Research Network Portfolio database at www.nihr.ac.uk. Some of these projects receive external funding from research councils and charities.
"There have been some recent findings about a genetic basis of CFS/ME that are providing extremely valuable insights into the causes of, and possible therapies for, the condition. Clearly, these are early research findings that at present have no direct relevance to any predictive or diagnostic gene test for these conditions. However, the Department of Health continues to keep such developments under review and there are well-established mechanisms to evaluate new genetic findings and ensure their proper implementation across the NHS."
Invest in ME onference organiser Richard Simpson said he wad "profoundly disappointed" by No 10's response – which he said was further indication of the government's failure to take the plight of people with ME seriously.
The full IiME response is given here:
"Invest in ME are profoundly disappointed by the continuing indifference to ME which the response to the e-petition from the Prime Minister's office has shown.
"The perfunctory response provides further confirmation that the current government has no intention of taking seriously the plight of people affected by ME.
"The lack of attention which the government continues to display toward ME is evident in the uninformed and superficial response.
"From the tardiness of the reply (provided over a month after the IiME ME/CFS conference in London was held) to the lack of any real policy being evident toward ME the Prime Minister's office has demonstrated that the government has no interest in engaging with the patient community and is devoid of ideas as to how ME can be treated.
"Invest in ME have responded to the Prime Minister via email and via post (a copy of our letter can be found on our web site).
"Invest in ME have requested a meeting with the Prime Minister and are willing to organise a representation to visit him.
"We have also offered to arrange for the Prime Minister to visit a severely affected person with ME in the hope that he would see for himself the desperate needs of people with ME in this country.
"We invite all friends of IiME to contact the Prime Minister's office and voice their opinion."