ME sufferers forced to battle with insurers: People affected by a rare nervous illness can lose benefits, writes Christine Stopp

MICHAEL LEVER, a Harris Queensway area manager from Christchurch responsible for a turnover of pounds 20m, became ill in 1988. He has not worked since May that year and is fighting Unum, the income replacement insurer, to restore the pounds 10,000-a-year benefit to which he believes he is entitled.

Paul Gregory, a former educational psychologist with Birmingham Education Authority, also became disabled in 1988 and has had a similar tangle with Permanent Insurance.

Brian Eveleigh, from Yorkshire, has had to sell his business and his house due to disability. He has had a long struggle to get benefits restored by a Lloyd's syndicate on a policy he had taken out to protect repayments on a pounds 5,000 loan.

The three all suffer from myalgic encephalomyelitis - ME - a rare neurological disease that can result from a viral infection. It produces a range of symptoms, such as exhaustion, paralysis, memory loss, panic attacks, and loss of hearing or sight.

Charles Shepherd, who acts as a consultant to the ME Association, says the disease probably occurs in one or two people per thousand of the population and across all social classes and ages, though predominantly in people between their twenties and forties. Both the World Health Organisation and the British Government recognise the disease as a disabling condition.

However, there is a good deal of scepticism about ME sufferers, and some of them believe this underlies the refusal to graEnt benefits. Dr Shepherd and Mr Lever have started co- ordinatinTHER write errorg details of suchcases. Around two dozen enquiries have been received, and 10 claimants have given detailed information to the embryonic support group. Of these, five claims concern Unum, two Permanent Insurance, and one each Sun Alliance, Skandia and Swiss Life. Unum says that the fact it is the market leader accounts for the large number of claims against it.

Mr Lever had a company policy through his employer. Unum stopped paying his benefit after he had a heart bypass operation and his heart surgeon reported that - as far as the operation was concerned - he had made a good recovery. When Mr Lever contested the decision, the company sent him to a doctor who was not a specialist in ME, and who, during the examination, described the condition as a 'malingerer's charter'. A leading ME specialist has subsequently diagnosed that Mr Lever has the disease.

Since the case arose from a company policy, it cannot be dealt with by the Insurance Ombudsman. Mr Lever has been granted legal aid to take it further.

Mr Gregory's policy had an exclusion clause covering depression, from which he had previously suffered. Permanent Insurance quoted this as their reason for stopping his benefit after paying around pounds 25,000 over two and a half years. Though he has four diagnoses which state he is suffering from ME, not depression, Mr Gregory has failed to win his case.

He was shocked when the Ombudsman found in the company's favour. The Ombudsman has since agreed that if and when a recognised test for ME is developed, and Mr Gregory is found positive, he will reopen the case.

In Dr Shepherd's opinion, Mr Eveleigh's case is striking in that the insurer refused him benefit stating he had a psychiatric or nervous problem - in effect, saying his symptoms are 'all in the mind'. This was despite reports from three psychiatrists saying there was nothing wrong with him mentally, and reports from four independent specialists saying he had ME with, among other evidence, clearly abnormal brain scans.

After a great deal of effort, Mr Eveleigh persuaded his insurer to reverse the decision, but he has to write to them every month to confirm he is still disabled.

The emergence of a new group of disabled claimants who have found themselves involved in an unequal struggle with insurers underlines the inadequacy of regulation and appeals procedures in medical cases. The insurance company can require the claimant to see a doctor of its own choosing and has no obligation to disclose details of the resulting report.

The claimant's only recourse in many cases is to sue the company. Even more worrying, there are indications that some doctors commissioned by insurers to produce medical reports are sceptical about ME.

The large number of claimants prepared to 'go public' about their problems - in addition to the ME claimants, there are some 30 members of a support group for Unum policyholders - suggests that reform is overdue.

In the meantime, it is worth fighting a decision made on medical grounds that you feel is unjustified, if only by writing letters and insisting on examination by a specialist in the field.

ME claimants can get in touch with Dr Shepherd through the ME Association, Stanhope House, High Street, Stanford le Hope, Essex SS17 0HA, 0375- 642466 (Mon-Fri 9am-12.30pm, 1.30pm-4.45pm).

(Photograph omitted)