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How long before the misery of ME is taken seriously?


‘When the full history of ME is written we will all be ashamed of ourselves’ – Dr Ola Didrik, neuroscientist

THERE is no doubt that ME is a serious, even life-threatening neurological illness of viral origin. Leonard Jason, a Professor of Psychology, summarises: ‘There are no more normal days, only different degrees of weakness, pain and other symptoms . . . often decades of almost total helplessness. It is goodbye to the life you have known, to work, to hobbies, to lovers, to spouses, to anything short of hope.’ Yet too many doctors, and large numbers of the public, still dismiss ME (myalgic encephalomyelitis) as malingering, laziness or hysteria. For those who have ME, like me, this can be physically and emotionally disastrous.

The WHO defined ME as a neurological illness in 1969 and the USA Centers for Disease Control (CDC) classifies it as a life-threatening disease suffered by millions. In 2010, GP and Daily Mail columnist Dr Martin Scurr said: ‘At last I’ve been convinced that ME is real’ after hearing evidence at the 5th World Conference on ME which ‘shows the condition really does have a viral origin’. Many suffer from ME for ten years or more and only 5 per cent recover.

It was first identified after 292 members of the medical and administrative staff at the Royal Free Hospital in London fell ill over a four-month period in 1955 with a debilitating, polio-like infectious illness. Symptoms included severe headache, lassitude, vertigo and nausea. Dr Melvin Ramsay, a renowned infectious disease specialist at the hospital, called the illness myalgic encephalomyelitis after pathology findings indicated it was a neurological disease causing inflammation of the brain and spinal cord.

Although the precise aetiology of ME is still unclear (and scarcely looked for), there is evidence that it is an immunological disease, triggered by an atypical form of polio and/or other viruses. Other researchers have found a range of abnormalities in ME patients such as immunological dysfunction and mitochondrial dysfunction (mitochondria are responsible for producing the energy in a cell), and the possibility of a retrovirus.

The widespread dismissive attitude to ME can be blamed on two British psychiatrists, Colin McEvedy and William Beard. In 1970, 15 years after the Royal Free outbreak, the pair reviewed the 1955 medical notes and concluded that the patients had experienced mass hysteria because most of them were female.

This misogynistic caricature of the weak, hysterical female has been parroted by psychiatrists, some physicians and the mainstream media ever since; the jeering term ‘yuppie flu’ appearing in the Press around the same time, aimed at ME patients for committing the crime of being mostly young, educated, professionally ambitious women. This also insultingly marginalises the male ME sufferers. (Multiple sclerosis similarly used to be dismissed as hysteria because it predominantly affects women. That was until advances in neuroscience forced medics to acknowledge it is a physical illness.)

Psychiatrists quoted in the MSM labelling ME as a ‘cultural phenomenon and metaphor for our times’ helped the trivialising term ‘Chronic Fatigue Syndrome’ to flourish and to replace the name ME. Australian artist Jodi Bassett, who developed ME at 19 and died at 40, argued that ‘CFS is an artificial construct created in the US in 1988 for the benefit of various political and financial groups’. The ridiculously all-encompassing term allowed a wide range of different illnesses to be lumped together as the same disease, leading to unreliable biomedical research findings, although most researchers were not granted adequate funding anyway.

Treatments recommended for so-called CFS included cognitive behavioural therapy and graded exercise therapy, in which a baseline for a patient’s physical capacity is established, then the time spent being physically active is increased by fixed amounts. Ironically it was a clinical study known as PACE, which aimed to justify these treatments, that inadvertently stopped ME being treated as a psychological illness. The health policy body Nice dropped CBT and GET from their ‘CFS’ guidelines and the NHS and CDC quietly stopped recommending them.

Dr Martin Scurr had been convinced ME is real by the evidence that, unlike with depression, exercising beyond the patient’s limits makes symptoms worse. Dr Melvin Ramsay had established this feature of the illness years ago, without which the disease cannot be diagnosed as ME. But this fact had been obscured by decades of inappropriate psychiatric interference.

As well as benefiting psychiatrists, this status quo has allowed pharmaceutical industries to profit handsomely from the anti-depressants used to treat ME. Patient reports and a BBC Radio 4 programme in the 1990s suggested that routine inoculation can trigger onset of full-blown ME in those genetically predisposed, or who already have it in an incipient form. But the prevailing attitude was (as now) that it is the millions who matter more than the few who are adversely affected by vaccinations.

The consequence of this chicanery, bigotry and neglect is psychological and physical damage to patients. In one notorious case, artist Sophia Mirza was sectioned under the Mental Health Act for insisting she had the illness and detained in a mental hospital. Two years later, aged 32, she died of kidney failure arising from the effects of ME. Severe infection of her spine was found in her post-mortem. Others forced themselves to exercise because it is not macho to give into ‘hysteria’. Once such was 54-year-old Labour MP Brynmor John, who collapsed and died as he left the House of Commons gym.

How long will it be before this debilitating illness is taken seriously by the whole medical profession? How many more lives will be written off before this happens?

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Sophie Palmer
Sophie Palmer
Sophie Palmer, who has an MA from Bristol University, works as an editor and researcher.

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