The National Institute for Health and Care Excellence (NICE) is being taken to Court over its last minute decision to suspend publication of new guidelines for clinicians treating patients with Myalgic Encephalomyelitis (ME, also known as Chronic Fatigue Syndrome or CFS). An ME sufferer, who is a minor, has been granted legal aid to commence judicial review proceedings against the health standards agency, arguing that NICE’s decision is unlawful because it breaches its obligation to be an independent body dedicated to promoting excellence in care uninfluenced by external political and professional pressures.

The row centres on new guidance which NICE was ready to implement on 18 August 2021 recommending that Graded Exercise Therapy (GET) be stopped as a treatment for ME. GET involves advising the patient to incrementally increase their physical activity in an attempt to build up tolerance. ME itself is a debilitating and complex condition involving neurological, immunological, and endocrinal factors characterised by chronic and multi-regional pain, a greatly diminished capacity to engage in physical activity, profound post-exertional malaise, sleep disorders, and a range of cognitive problems including “foggy thinking” and memory loss. The incidence and severity of symptoms varies considerably among sufferers, with the most seriously-affected patients being incapable even of basic physical activity without experiencing crippling exhaustion.

GET is a controversial treatment for ME/CFS, since the therapy is by definition based on the logic that the patient’s symptoms are attributable to physical inactivity as opposed to an authentic underlying pathology. NICE’s proposed new guidelines would see GET removed as a recommended treatment for ME sufferers, while the use of cognitive behavioural therapy (CBT) would be downgraded from a treatment to a supportive therapy only. However, NICE decided at the last minute not to publish the new guidelines, citing concerns from the medical profession and the NHS itself, and deciding instead to hold a “round table” meeting (scheduled for 18 October 2021) in an attempt to reach a broader agreement on the wording of the document.

NICE’s decision to suspend publication of the guidelines caused dismay among ME/CFS sufferers who have long had concerns about the efficacy of GET and CBT for their condition, and one claimant, a child, has been granted legal aid to take the matter to judicial review at the High Court. Judicial review is a legal procedure which sees the High Court decide whether or not a public body has acted beyond its powers or otherwise breached its obligations. The claimant developed ME following a viral infection but was encouraged by his clinicians to engage in GET, which treatment it is alleged caused him additional harm. The crux of his case is that NICE has acted unlawfully and/or irrationally inasmuch as they are violating their own procedures and “playing politics”, allegations which NICE denies. NICE’s lawyers point out that its guidelines are just that, guidelines, which are not legally binding on clinicians and exist simply to inform judgement.

It now falls to the High Court to determine whether or not NICE has acted unlawfully and, if indeed found at fault, whether or not the UK’s estimated 250,000 ME sufferers have by implication been subjected for many years to therapeutic regimes in the form of GET and CBT which may ultimately have done them more harm than good.

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