MEDICAL MATTERS
- Medical Matters features questions asked by Members of the ME Association on health-related topics.
- Dr Charles Shepherd and the ME Association’s other advisers answer these questions by sharing their expert knowledge.
- Medical Matters is based on the popular ‘Ask the Doctor’ series in ME Essential magazine.
- It is a free resource that supplements the detailed information contained in the full range of literature that can be found in the website shop.
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Questions in the Category: Sleep Disturbance
Sleep apnoea
Like most people with ME/CFS, I always wake up from what is often an erratic night’s sleep feeling totally unrefreshed. I also went through a phase of sleeping for very long periods at the start of my illness. I now find that I’m feeling very sleepy during the day but this isn’t the same as the debilitating ME fatigue that I also experience.
My GP has queried whether I might have a condition called sleep apnoea. Is this more common in people with ME? And can it be treated?
Daridorexant (Quviviq) for sleep disturbance
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?
What is non-restorative/unrefreshing sleep?
Like most people with ME I wake up each day, even after a good night’s sleep, not feeling any better than when I went to bed and sometimes even worse. So I can understand why unrefreshing sleep, often combined with various other sleep disturbances, is a key diagnostic feature of ME. But do we know about why people with ME have such unrefreshing sleep?
Is ME a post-acute infection syndrome (PAIS)?
I see that ME and Long Covid are now sometimes being referred to as being a post-acute infection syndrome. Why is this?
And following on from this question, one important action in the generally disappointing research section of the DHSC Delivery Plan is to fund research into post-acute infection syndromes. So is this good or bad news for people with ME if we are going to be lumped in together with all kinds of post-infective conditions?
Caffeine-containing drinks – are they safe if you have ME?
I know I probably drink far too much coffee – about 5 cups a day – but it helps me to ‘wake up’ in the morning and stay more alert during the day. But what do we know about the effect of caffeine on the brain? Is it actually harmful or beneficial to people with ME/CFS?
Paralysed by Sleep
Like most people with ME my sleep has been badly affected. I never manage to get a solid night’s sleep and always feel ‘sleep deprived’ on waking up.
More recently, I’ve had a more unusual symptom which can best be described as feeling ‘paralysed by sleep’ when I wake up. I can’t move or speakfor a short period of time – after which everything quickly returns to normal. My GP isn’t sure what is going wrong. Could this be connected to ME?
Night sweats
Do people with ME have night sweats? This is a new symptom that is causing myself and my partner considerable distress.
Symptoms: Post-Exertional Malaise (PEM)
What is Post-Exertional Malaise and how can it best be managed?
Gilbert’s Syndrome
A few months ago I noticed that the whites of my eyes had turned slightly yellow. It turned out that I had a mild episode of jaundice. My GP was a bit mystified – so I was sent to see a liver specialist who diagnosed a condition called Gilbert’s Syndrome. The specialist said it was nothing to worry about. However, as he had seen other people with ME/CFS with the same condition, he wondered whether there may be a link. Is this so?
Symptom: Temperature Regulation (2)
I’ve always enjoyed a long soak in a hot bath, especially at the end of the day – and still do. But since developing ME/CFS I’ve found that I feel completely wiped out afterwards – as well as feeling more lightheaded and faint than usual. Is this something that could be related to ME/CFS, because it doesn’t appear to be listed as a symptom?
Dr Charles Shepherd
Dr Shepherd has been Trustee and Hon. Medical Adviser to the ME Association for more than 40 years. He is integral to the charity’s activities and provides information and support based on his professional knowledge, personal experience as a doctor with ME/CFS, and the understanding gained from helping many thousands of people with the condition. He was a member of the comittee responsible for the 2021 NICE Clinical Guideline and is a recognised expert on ME/CFS in the UK. His knowledge extends to Post-Viral Fatigue Syndromes (PVFS), Myalgic Encephalopathy/Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and Post-Acute Sequelae of SARS-CoV-2 infection (PASC) or Long Covid.
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Medical Matters is based on the popular ‘Ask the Doctor‘ series featured in the highly-regarded member’s magazine, ME Essential, and in the healthcare professional magazine, ME Medical. Both are produced by the ME Association and published as hard-copy magazines every 3 months and sent to members and healthcare professionals by post to home or business addresses.
If you are a Health Care Professional you can sign-up to receive ME Medical magazine (people with ME/CFS can also nominate their HCP by completing the sign-up form).