Question

I have been reading about an interesting new drug for treating insomnia called daridorexant. I thought it might be worth trying as I have difficulty getting off to sleep, wake up several times during the night and always wake up feeling completely unrefreshed. My GP said she didn’t have any experience of using this new drug and that it was also quite expensive. So she wasn’t willing to prescribe it.

Is there any evidence that this is a drug that could be helpful for people with ME/CFS? If so, should I go back to my GP?

Answer

Daridorexant (brand name Quviviq) is an interesting new drug for treating insomnia. It involves a different approach to treating sleep disturbance in that it works by blocking chemical transmission receptors, known as orexin receptors, which drive wakefulness. So instead of using sedation like benzodiazepines, it simply removes the “stay awake” signal in the brain.

The drug is claimed to help people fall asleep faster, stay asleep longer and wake up clear-headed – without the dependency risks of traditional sleeping pills. However, as with any drug, it does not suit everyone.

Side-effects of daridorexant include headache, sleepiness or fatigue, dizziness and nausea. Less commonly, it may affect mood, cause abnormal dreams, or worsen depression in susceptible patients.

Please note that NICE (National Institute for Health and Care Excellence) has issued specific clinical guidelines for who can be prescribed daridorexant. To be eligible, you must:

• Be an adult who has experienced insomnia symptoms for 3 or more nights a week for at least 3 months.
• Suffer from severe daytime functioning impairment.
• Have already tried Cognitive Behavioural Therapy for Insomnia (CBT-I) which has not worked, or if CBT-I is deemed unsuitable or unavailable to you.

NICE guideline information

In relation to cost, your GP is correct in that it is far more expensive than most other drugs that are prescribed for sleep disturbance – over £40 per month. We have only had a very small amount of feedback from people with ME/CFS who have been prescribed this drug so far.

When discussed on MEA Facebook on May 18th the feedback was as follows:

• 24 people reported a positive or very positive response,
• one person reported no effect
• 5 people experienced side-effects and did not find it helpful

To have such a positive (80%) response to a drug that has been prescribed for the management of sleep disturbance in ME/CFS is very unusual. However, the numbers are small – so it’s impossible to draw any firm conclusions. Having said that, it looks as though this is a drug that requires further assessment in ME/CFS – possibly through a proper clinical trial.

More Information:

• 2025 report from the Guardian: NHS access to promising sleeping pill daridorexant is patchy, say doctors
• The ME Association provides a free downloadable booklet on Sleep Management which may be helpful.