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: Neurological Disease
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?
Vaccinations: Flu (Influenza) 2023-24
Can you help me reach an informed decision about the 2023-24 Flu vaccination?
Research: Post-Mortem
What is happening to post-mortem tissue research into ME/CFS at the moment? Is the ME Association still funding and carrying out any postmortem research? And have any significant abnormalities been found in the post-mortems that have been carried out so far?
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?
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!
Investigations: Magnetic Resonance Imaging (MRI)
I have been referred to a neurologist who has arranged for me to have an MRI scan. This will involve the use of a dye/contrast agent called gadolinium. Is this a safe procedure to have for people with ME/CFS? Can it be used to confirm a diagnosis of ME? And can MRI brain scans cause any adverse reactions?
Disability Classification
How does the government define a disability? Does the government classify ME/CFS as a disability? I ask because I assume that this could have important implications for people who are having problems with benefits, education or work.
Classification: Neurological Disease
Having weighed up all the pros and cons of having a flu jab this winter I decided to go ahead and have one. However, my GP would not accept that ME is a neurological disease. So I had to pay for my jab. I know that the World Health Organisation (WHO) classifies ME (along with post viral fatigue syndrome and CFS) as a neurological disease. But does the Department of Health accept this classification? If so, surely people with ME should be able to have a free flu jab – along with all the other help and eligibility for DWP benefits etc that should come from having a disabling neurological disease.
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).
