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‘Lacking in transparency, ethics, and compassion’: NICE pauses publication of ME guidelines

When NICE paused publication of the new ME guidelines this week it rocked the community that lived with the condition. Danielle Watts discusses why the harmful treatments some professionals are opposed to cutting out can’t be allowed to continue.

When Daniel Moore was a child he developed myalgic encephalomyelitis (ME). At the time ME was often described as ‘yuppie flu’, thought mainly to affect the middle-classes and to be a symptom of laziness rather than any serious illness.

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NICE’s Worrying New Chronic Pain Guidelines

It’s the summer of 2012. I am still at university, using the very last of the term-length pool membership I’d bought. I swim 2 miles. That’s 128 lengths of a 25m pool. The walk back up to the main campus is hard, steep and my bag is heavy with my wet costume. I collapse onto my bed. My hands hurt, but four or five doctors can’t tell me why that is. My knees hurt, but after three doctors, I saw one specialist who said it should clear up by the time I’m 20, which I turned last month. I swallow a dihydrocodeine and sleep for 8 hours.

The NICE guidelines released on 7th April recommend analgesics not be used for primary chronic pain. What they do recommend is exercise, antidepressants, acupuncture, and psychological therapies. Paracetamol and ibuprofen, possibly some of the most widely taken drugs outside of penicillin, that usually cost about 20p for a box of 16, they also can’t recommend.