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: Orthostatic Intolerance
Arnold Chiari Malformation, brain decompression surgery and ME/CFS
Having had a diagnosis of ME/CFS for many years, I have recently been re-assessed by a neurologist because of my increasingly frequent bad headaches that come on after coughing, sneezing or straining. I also have various ME symptoms – problems with balance, numbness and tingling and dizziness in particular. But I’m less bothered by fatigue and brain fog. I have now been diagnosed with a fairly rare brain condition called Type-1 Arnold Chiari Malformation. Interestingly, my neurologist told me that this condition has been linked to ME and that some people with ME have had complex neurosurgery to deal with this.
Hypermobility & Ehlers Danlos Syndrome
My daughter, who is now in her early twenties, has had ME/CFS since being a teenager. We have always felt that her joints are more flexible than normal. She often has strains and sprains and has dislocated her knee in the past. Her doctor is now querying whether she may now have a hypermobile joint condition called Ehlers Danlos Syndrome. Are there any links between hypermobile joints and ME/CFS? Or is this just a coincidence?
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?
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!
Management: Fitness
Can I ask what the advice is on heart health for people with ME? As most of us can’t exercise, how do we maintain a healthy cardiovascular system? Is a healthy diet enough?
Symptom: Palpitations
Like many people with ME I have occasional palpitations. Does this mean that I might have some form of underlying heart disease? Or is this just another part of having ME? And are there any drug treatments that might be helpful?
The 2021 NICE Guideline ME/CFS: Drug Treatments
Comparing some of the recommendations on the use of specific drugs in the new NICE guideline to those in the previous 2007 NICE guideline, I see that melatonin is no longer given a possible recommendation for sleep disturbance in the 2021 guideline and the “do not use” instruction in the 2007 guideline no longer applies to antiviral drugs, fludrocortisone, steroids and thyroxine.
Does this mean that doctors can no longer prescribe melatonin but that they can now prescribe amphetamines, antiviral drugs, steroids, etc for people with ME?
Dysautonomia: Orthostatic Intolerance (OI) and Postural Orthostatic Tachycardia Syndrome (PoTS)
I keep reading about orthostatic intolerance, PoTS and postural hypotension and how they can all be symptoms of ME/CFS. But what do all these medical terms mean? What is going wrong? And are all these symptoms and syndromes related to each other?
New Symptoms
I know that in addition to all the well-known symptoms associated with ME/CFS there are a considerable number of other symptoms that can sometimes occur. But when should I go and see my doctor if I develop a new symptom? Or when an existing symptom isn’t quite the same as it used to be? In my case I’ve always had a problem with balance and I know you have described this as ‘walking on rubber’ – which is exactly how it feels at times! However, I’m now having what are best described as occasional dizzy spells where I feel very “off balance”. I also suspect that my hearing isn’t quite as sharp as it used to be. I’ve mentioned this problem to my new GP, who checked my blood pressure, looked inside my ears and said it was probably caused by ME/CFS – but come back if things don’t improve! I don’t want to be seen as a hypochondriac, turning up at the doctors every time I don’t feel well. But at the same time, I don’t want to find that something important, or treatable, is being missed.
Symptom: Fainting
Like most people with ME I have problems with balance and find it difficult to sustain any sort of activity that involves prolonged standing. I sometimes feel faint when standing up but have never actually fainted until recently. This has now happened on three occasions – all for no apparent reason. Fortunately, someone has always been with me and I haven’t injured myself. I usually recover very quickly but don’t normally feel as though I’m ‘back to normal’ till the next day. My GP took my pulse and blood pressure (which was low) and decided it was probably ‘just anther part of having ME’. I have been given some self-help advice about keeping well hydrated with water and not standing up too quickly but I’m concerned that there may be something else going wrong in addition to my ME. What would you advise?
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.
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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).
