‘Chronic consensus or controversy’, The British Psychological Society, 9 August 2011

From the news page of the British Psychological Society, 9 August 2011

Experts from five continents have agreed upon on a new set of ‘International Consensus Criteria’ for myalgic encephalomyelitis (ME; also referred to as chronic fatigue syndrome or CFS), which they hope will improve clinical diagnosis and research into the condition.

Writing in the Journal of Internal Medicine in July (www.meassociation.org.uk/?p=7173), the 25 co-authors said: ‘The primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low-threshold of fatigability and symptom flare in response to exertion. This will enable like patients to be diagnosed and enrolled in research studies internationally under a case definition that is acceptable to physicians and researchers around the world.’

The new criteria are the latest in a series of attempts to nail down the hallmarks of ME/CFS. For example, last year saw a revision to narrow down the Canadian Case Definition, originally published in 2003, which has proved popular with many researchers. Bruce Carruthers, a psychiatrist in private practice in Vancouver, who was lead author on those 2003 criteria is also co-editor of the new International Consensus Criteria.

A key departure from its forerunners by the new International Criteria is that symptoms and signs need not have been present for six months before a diagnosis can be made. ‘No other disease criteria require that diagnoses be withheld until after the patient has suffered with the affliction for six months,’ the authors said.

However, the cardinal symptom remains ‘Post-Exertional Neuroimmune Exhaustion’ – a profound loss of energy following exertion, and impaired recovery. Also, the patient must have at least one symptom in each of the following categories: neurocognitive impairments (e.g. pain); immune, gastro-intestinal and genito-urinary impairments (e.g. food sensitivities); and energy production/ transportation impairments (e.g. laboured breathing).

The new criteria also urge that the CFS label be dropped. ‘Using “fatigue” as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion,’ argue Carruthers and his colleagues. ‘Fatigue in other conditions is usually proportional to effort or duration with a quick recovery, and will recur to the same extent with the same effort or duration that same or next day. The pathological low threshold of fatigability of ME described in the following criteria often occurs with minimal physical or mental exertion, and with reduced ability to undertake the same activity within the same or several days.’

Publication of the new diagnostic criteria coincided with reports by the BBC and elsewhere of a hate campaign being waged against scientists investigating the psychology of ME/CFS (tinyurl.com/43gdktg). Psychiatrist Simon Wessely at the Institute of Psychiatry said he’d been the target of intimidating letters, e-mails and phone calls. ‘Sadly some of the motivation seems to come from people who believe that any connection with psychiatry is tantamount to saying there is nothing wrong with you, go away, you’re not really ill,’ he told the BBC.

Chartered psychologist and BPS fellow Dr Ellen Goudsmit has ME and researches the condition. She had first-hand experience of the animosity that often confronts scientists working in the field – including two complaints made about her to the BPS and a court case, which she won. But she says it’s not just a reaction against a psychological interpretation of the illness. ‘All those who have harassed and threatened me during the past ten years have known that I was a patient and were well aware of my criticisms of psychiatric theories about ME,’ she says. ‘However, patients had become increasingly angry at the way the medical world had trivialised the illness and hyped the benefits of psychiatric interventions like CBT,’ she explained, ‘and that created a fertile ground for conspiracy theories and abusive e-mails.’

Goudsmit herself became a target after challenging factual errors in posts on the internet. ‘Those responsible are a small group, most don’t have ME themselves, but they’ve alienated a lot of experienced experts who didn’t want to risk being in the firing line and retired. In my view, the real victims of the conspiracy theorists have been people with ME.’

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