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
Eyelid twitching – Blepharospasm
During the course of my illness I’ve experienced muscle twitching in my legs and sometimes in my arms. The twitching tends to occur when I’m not feeling well or tired. And while this can be annoying it doesn’t normally interfere with what I want to do. I’ve recently started having a similar problem with my eyelids. Is this common in ME/CFS? And is there any form of treatment?
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?
ME/CFS Specialist Service: Referral
After having a nasty viral infection (probably glandular fever) at the beginning of the year I have been struggling to get an explanation from my GP as to why I haven’t got back to normal health. He has now decided that I probably have post-glandular fever ME/CFS. However, my GP admits that he doesn’t know very much about how to manage ME/CFS. I have asked for a referral to a specialist ME/CFS service but it turns out that we don’t have one. I then asked if I could be referred outside the local area to a service that has good reports from people I have heard from. However, I’m finding it very difficult to get this moving because my GP says I can’t choose where I want to be sent. Please could you explain what my rights are?
Post-Viral Fatigue Syndrome, Myalgic Encephalomyelitis or Encephalopathy, Chronic Fatigue Syndrome, and Long Covid
Please can you define what PVFS, ME/CFS, and Long Covid mean. I am having difficulty determining if they are the same disease or different. Thank you!
Symptoms: Myoclonic Jerks
Jerking movements are waking me up. Like most people with ME/CFS, I have major problems with sleep – especially getting to sleep and waking in the night. This leads to night after night of waking up feeling completely unrefreshed. I’ve also had problems in the past with what my doctor calls ‘restless legs’ – which have also kept me awake at night. I’ve now developed some rather frightening jerking movements in my legs. My doctor says these are called myoclonic jerks. Is this something that is also linked to ME/CFS? And is there an effective form of treatment?
Septicaemia (Sepsis)
Could you say something about sepsis and ME? A friend of mine who has ME has been seriously ill in hospital with sepsis but is now back home again. The doctors say that she is going to need a prolonged period of recovery from the effects of sepsis. This has also caused a significant relapse of her ME. Are people with ME more at risk from developing sepsis if they just have a minor injury or infection? And is there anything we should be doing to reduce the risk of developing sepsis?
Symptom: Vivid Dreams
Are vivid dreams a recognised symptom of ME? Like most people with ME I have unrefreshing sleep and sometimes wake up in the night. But I’ve recently been waking in the middle of the night with very clear memories of rather bizarre vivid dreams. Fortunately, nothing frightening has happened so far!
Aetiology: Immune System
I keep seeing references to ‘low level immune system activation’ being an important research finding in ME/CFS. But what does this mean in language that I can understand?
Treatment: 5-HTP (5-Hydroxytryptophan)
An alternative health practitioner has recommended that I take a 5-HTP supplement for my muscle pain and headaches, but I’m very wary of upsetting my heart and nervous system – especially my heart rhythms which are all over the place at the moment. Is there any evidence that this supplement, which I had never even heard of, is both safe and effective for use in ME?
Mental Health: Depression
Like many other people with ME/CFS, I often feel fed up and frustrated by all the restrictions this illness imposes on my life. But I don’t feel depressed. I now have a new bright GP who thinks I am depressed and he wants me to try a course of antidepressants – to see if they make me feel happier! I know I would feel happier if I just felt well again. But I’m not convinced that I need antidepressants to do so!
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.
If you have questions about ME/CFS or Long Covid, you can:
- Review the free information in the What is ME/CFS? section of the website, and the free Covid-19 and Long Covid information in the website shop.
- Review the largest range of literature covering all aspects of living with ME/CFS. Download detailed information about symptoms, diagnosis, management, co-mordities, employment, education, related health conditions, The 2021 NICE Clinical Guideline, welfare benefits etc.
- Join the ME Association as a member and you'll receive the highly-rated ME Essential magazine, and you can ask questions of the charity’s expert advisers including Dr Shepherd.
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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 an HCP you can sign-up here to receive ME Medical magazine (people with ME/CFS can also nominate their HCP by completing the sign-up form).
