‘No confidence’: Charities reject NICE ‘no update’ proposal for ME/CFS guideline | 26 July 2017


Published online in Vada magazine, By Adam Lowe 26 July, 2017.

Charities in the UK have delivered a resounding vote of ‘no confidence’ to NICE, the body which sets clinical guidelines for doctors in the UK.

NICE is currently reviewing the guidelines for myalgic encephalomyelitis (also known as chronic fatigue syndrome, or ME/CFS), which hasn’t been updated in 10 years. It has stated that it plans to go ahead with a ‘no update’ recommendation despite the review, which will mean the existing guideline will remain intact with no changes.

Charities and patient groups across the UK have accused NICE of ignoring new and compelling biomedical research from around the world, just days after the US Centres for Disease Control and Prevention’s decision to change its own clinical guidelines to remove outdated treatment recommendations. According to Action for ME, this may constitute a breach of the UN Convention on the Rights of Persons with Disabilities and a failure to offer ‘informed consent’.

In the submissions from Forward-MeME ActionInvest in ME ResearchThe Tymes TrustAction for MEHope 4 ME & Fibro Northern Ireland and the ME Association, these groups detail a number of objections to the NICE guideline proposal. These include the inappropriateness of a ‘one-size-fits-all’ treatment to problems with the diagnostic criteria themselves, which they feel are too loose, and thus may apply to patients with vastly different illnesses.

‘On grounds of equality and human rights, as well as on grounds of effective healthcare, the NICE guideline must be reviewed and updated,’ said Action for ME.

On Monday, the ME Association wrote to NICE’s CEO Sir Andrew Dillon, delivering a petition signed by more than 15,000 people, which it calls ‘the biggest expression of no confidence in a NICE guideline ever recorded’. According to the MEA, ‘much of the review appears to have dwelt on evidence deemed supportive of the recommendations for cognitive behavioural therapy and graded exercise therapy’, which it feels gives ‘scant regard’ to the research which criticises these treatment methods.

‘The experts behind this document really are keen to demonstrate their support for these therapies, but markedly less keen to overturn out-of-date or unhelpful information in the guideline itself,’ writes the MEA.

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