Demand for research into ME

MARK NICHOLLS

27 November 2006 00:00

Urgent action and a major increase in research are being demanded by a hard-hitting inquiry into a debilitating condition that affects hundreds of thousands of people.

Campaigners hope the findings will change attitudes towards diagnosing and treating "one of the most contentious illnesses in medicine today".

A parliamentary group headed by Norwich North MP Dr Ian Gibson has spent a year looking into CFS/ME (chronic fatigue syndrome/myalgic encephalomyel-itis), taking evidence from sufferers, carers and experts.

Patients groups and sufferers welcomed the report, published today, and voiced the hope that it would herald a new era of treatment, diagnosis and care for sufferers of an illness which one Norfolk father of two daughters described as having "taken their lives away".

Richard Simpson said: "It is a relief that at last a government body is acknowledging that ME is a severe, incapacitating illness and that those who suffer from it, as well as their carers and families, may have their lives completely ruined."

In the East, support groups also hope the impact of the Gibson Inquiry will halt an erosion of services for sufferers, despite the financial plight of primary care trusts in Norfolk and Suffolk.

The condition is often not fully recognised or acknowledged but is estimated to affect 250,000 people nationwide and more than 9,000 in the eastern region alone

The Parliamentary Group on Scientific Research into Myalgic Encephalomyelitis received thousands of written submissions of evidence from medical experts, scientists, patients and patient groups across the UK and internationally, and also held five oral hearings.

The Gibson Inquiry argues for massive investment in research into CFS/ME to realign the focus of research and have greater and more relevant patient involvement in the process.

The report follows the end of the National Institute for Health and Clinical Excellence (Nice) consultation period on guidelines for treating CFS/ME which have faced criticism.

Dr Gibson said: "At last there is an inquiry which identifies the seriousness of CFS/ME. For too long the patient's voice has been left out of the debate.

"I hope our inquiry will highlight the difficult issues surrounding this illness and the urgent need further research. One thing is sure, we have a fantastic opportunity here with our inquiry and the new Nice guidelines really to begin to recognise this illness for what it is, to look for causes and new treatments and to really build consensus amongst doctors and patient groups"

The group undertook the inquiry into CFS/ME after meeting patient groups in 2005.

The Gibson Inquiry argues for massive investment in research into biomedical models of the illness but points out that it is also still unclear whether CFS/ME is one illness with a spectrum of severity or two separate illnesses.

It also raises concerns over treatments - Cognitive Behavioural Therapy (CBT), Pacing where patients pace their energy and Graded Exercise Therapy (GET). These treatments are useful to people with a number of long-term debilitating illnesses but are usually proscribed as well as medical treatment not instead of.

The inquiry calls on the government to rectify the historical bias toward a psychological model of treatment and commission a "genuinely independent panel of medical experts" consisting of virologists, immunologists, geneticists, biochemists etc who can asses the international and UK evidence objectively. It calls on the Medical Research Council to encourage research.

It also wants treatment centres around the UK, in which the government has already invested £8.5m, to be involved in research programmes. In addition it wants the issue of access to benefits for CFS/ME sufferers to be clarified.

Barbara Robinson, from the Suffolk Youth & Parent Support Group and a member of the East Anglia ME Patient Partnership, was pleased the report recognised that ME is prevalent among teenagers and children.

She said: "Despite local NHS deficit and funding crises, Norfolk and Suffolk patients hope the Gibson Report will shame local SHAs and PCT managers into responding."

Mr Simpson, who lives in Norwich and is involved with the charity Invest in ME, also welcomed the report: "We have been asking for a long time for very simple, common-sense things such as the adoption of comprehensive diagnostic criteria and epidemiological studies. We are delighted that this report agrees that this is vitally important."

Links:

Suffolk Youth & Parent Support Group: www.suffolkmeandyou.org.uk

Invest in Me: www.investinme.org

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