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.
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Questions in the Category: Neurologist
Symptoms: Balance
I developed ME a few years ago and have all of the main symptoms including occasional problems with balance or unsteadiness, especially when I’m tired. Over the past few months my balance/ unsteadiness has become more persistent. I’ve also had a couple of episodes when I’ve come off an escalator (which I no longer do) and nearly fallen over. My GP has checked me over (nothing abnormal was found) and prescribed a drug called Stugeron/ cinnarizine, which hasn’t really helped.
What else can I do? Just put up with it?
Functional Neurological Disorder
We don’t have a local ME/CFS referral service where I live so I was referred by my GP to a consultant neurologist to help confirm that I have ME.
The neurologist told me that (like most neurologists) he does not like the name the ME and instead calls this condition a functional neurological disorder (FND). After diagnosing me as having FND he reassured me that there was nothing seriously wrong and offered to refer me to a psychologist for help with management – which I declined!
So is having a FND the same as having ME? And could I have another opinion from a doctor who is more in tune with the recommendations in the new NICE guideline on ME/CFS?
Symptoms: Pins and Needles
I’m in my early forties and have had moderate ME/CFS for about 5 years. I have all the usual symptoms but I now have a new and rather distressing sensation in my arms and sometimes in my legs. It is very similar to the ‘pins and needles’ sensation you can get when your legs have been crossed for too long. These abnormal sensations come and go and don’t seem to be triggered by anything in particular. Is this yet another symptom of ME/CFS? Or do I need to go and see my doctor?
ME/CFS Specialist Services
The new NICE guideline was published a year ago. But here in Northamptonshire we still don’t have a specialist ME/CFS service where GPs can refer people for help with either diagnosis or management. And there doesn’t appear to be any formal arrangement with a referral centre anywhere else that GPs can refer people to. I think this is unacceptable. So I am going to raise this with my MP – hopefully by arranging a meeting. Do you have a brief summary of the key points that I need to make?
Symptoms: Fits and Seizures
My wife, who is in her mid forties and has had moderate to severe ME/CFS for over 10 years, recently had a very strange episode where she started shaking and lost consciousness for a short while. She was taken by ambulance to hospital where the doctors thought she may have had an epileptic fit. She was discharged the following day and then saw a neurologist who has arranged for investigations – including an MRI scan – as there is still some uncertainty over whether this was an epileptic fit. Are fits more likely to occur in people with ME/CFS? And if so is there any specific form of treatment?
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 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).