Call for action over ME

A HARD-HITTING inquiry into a debilitating condition affecting more than 9,000 people in East Anglia has demanded urgent action and a major increase in research.

A HARD-HITTING inquiry into a debilitating condition affecting more than 9,000 people in East Anglia has demanded urgent action and a major increase in research.

Campaigners hope the findings will change attitudes towards diagnosing and treating CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis).

A parliamentary group has spent a year looking into the illness, taking evidence from sufferers, carers and experts.

Its report, published yesterday, was welcomed by support and patients' groups in the east, which hope it will halt an erosion of services for sufferers, despite the financial plight of Primary Care Trusts (PCTs) and Strategic Health Authorities (SHAs).

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Barbara Robinson, from the Suffolk Youth & Parent Support Group and a member of the East Anglia ME Patient Partnership, 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.”

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.

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The Parliamentary Group on Scientific Research into Myalgic Encephalomyelitis, headed up by Norwich North MP Ian Gibson, received thousands of written submissions of evidence from medical experts, scientists and patients across the UK and internationally, and also held five oral hearings.

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

It also raises concerns over treatments: Cognitive Behavioural Therapy, Pacing - where patients pace their energy - and Graded Exercise Therapy. 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”.

This would consist of virologists, immunologists, geneticists, biochemists, and such like, who can asses the international and UK evidence objectively.

It calls on the Medical Research Council to encourage research and wants treatment centres around the UK, in which the government has already invested £8.5milliom, to be involved in research programmes.

It also wants the issue of access to benefits for CFS/ME sufferers to be clarified.

Richard Simpson, who lives in Norwich and is involved in the charity Invest in ME, said: “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.”

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