Number 10: Invest in ME Conference Petition: Response

On 6 March, I highlighted a Number 10 e-petition submitted by David Loomes.  The deadline to sign up by was 1 May 2009. The e-petition received 2,486 Signatures.  Any enquiries in relation to this e-petition should be directed to David, the petition organiser.

The response to this e-petition can be read here and below:

http://www.number10.gov.uk/Page19853

Wednesday 1 July 2009  Attend IiME 2009 – epetition response

We received a petition asking:

“We the undersigned petition the Prime Minister to petition for Ministers Of Health, MRC and CMO to attend the INVEST in MEConference 29th May 2009.”

 Details of Petition:

“We the undersigned petition the Prime to send the Minister Of Health, Medical Research Council delegates and the Chief Medical Officer to attend the INVEST in ME Conference 29th May 2009 London. The previous IiME conferences in 2008 attended by presenters and delegates from 13 countries, from Europe, USA, Australia, New Zealand and South Korea demonstrated that “PROVEN BIOLOGICAL MARKERS & TREATMENTS FOR SOME SUB TYPES OF ME/CFS ARE ALREADY THERE!” Now the challenge is for the Chief Medical officer, the Medical Research Council and the Government to take up the challenge laid down by the conference in 2008 and commit to a national strategy of biomedical research into ME, without any conditions or provisions for enforcing the psychosocial model to be in corporated.”

 Read the Government’s response

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.

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