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: Postural Orthostatic Tachycardia Syndrome
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.
Treatment: Modafinil
I have had PoTS and ME/CFS for over 10 years and now have Long Covid as well – if that’s even possible as perhaps they are the same thing anyway? My question is about a drug called Modafinil as I have been offered a trial of this treatment from my PoTS consultant to help with my fatigue. I have looked online and can’t find a lot regarding its use in patients with ME/CFS. Please could you point me in the right direction for any research on this or anyone with ME/CFS that has any experience of taking it. One of my main concerns is that it will create a false energy high, so that I will want to do more, then I will end up with worse PEM and crashing. Another potential problem is that I already have mental-health issues as some of the side-effects are mental-health related.
Treatments: Mestinon (Pyridostigmine)
I’ve read about a drug called Mestinon being helpful for some people with ME, especially if you also have postural orthostatic tachycardia syndrome (PoTS), and I would really like to try using it. I know it can cause unpleasant side-effects but I’m willing to take a risk. Do you have any advice on how I might be able to convince my GP to prescribe it? Or do you know of any private doctors that might be willing to prescribe it?
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: Dizziness
I often feel light-headed and unsteady on my feet, and have done so since my ME started about five years ago after a nasty infection. But I’ve recently been having ‘dizzy spells’ where I feel faint, sickly and much more unbalanced. These attacks come on without warning and then settle down. Is this part of ME?
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).
