Full text of ME Association response to article in ‘The Observer’, 21 August 2011

In response to Chronic fatigue syndrome researchers face death threats from militants (Robin McKie), Observer, 21 August 2011.

INTENDED FOR PUBLICATION:

Sir

The ME Association agrees that any form of intimidation is a completely unacceptable way for people to pursue a dispute involving researchers they do not agree with. But the actions of a handful should not be used to denigrate the vast majority who suffer physically from this illness.

There are approximately 250,000 people with ME/CFS in the UK – a quarter being severely affected – and some of them are children as young as 7. This an illness that is estimated to cost the country over £3 billion in lost taxes, benefit payments and medical time.

However, government funding for research has been dominated by studies involving behavioural approaches to management such as cognitive behaviour therapy (CBT) and graded exercise therapy (GET). Many report CBT to be ineffective and around 50% say that GET makes their condition worse. Research into the underlying physical cause of ME/CFS has been almost non existent..

So people with ME/CFS are justifiably angry and frustrated at the way it has been left to patients and charities to fund biomedical research – the latest example being £150,000 to set up an ME/CFS biobank.

The Medical Research Council has now accepted that these grievances are valid and set up an expert group. A list of research priorities has been identified along with £1.5 million of ring fenced finding for biomedical research. Research applications are now being peer reviewed/assessed.

Dr Charles Shepherd
Hon Medical Adviser, ME Association
Member, MRC Expert Group on ME/CFS Research.

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