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: Brain

Arnold Chiari Malformation, brain decompression surgery and ME/CFS

ME Essential Autumn 2024

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: Hyperbaric Oxygen Therapy (HBOT)

ME Essential Summer 2023

Has there ever been a clinical trial to assess the use to hyperbaric oxygen (HBO) in ME?  I know that HBO is being used by people with multiple sclerosis as well as ME – so it seems that there are positive effects in the case of neurological diseases. I’ve also read that a clinical trial involving people with Long Covid has found some beneficial effects.

Research: Post-Mortem

ME Essential Summer 2023

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?

Symptom: Temperature Regulation (2)

ME Essential Spring 2023

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?

Test: Synacthen

ME Essential Spring 2023

A blood test has shown that I have a low level of the hormone cortisol. As a result I am now being referred to hospital to have a synacthen test to assess my adrenal gland function. As this test involves the use of a drug that stimulates steroid production is it likely to cause any problems for someone with ME/CFS? Or could the use of a steroid be a way of treating ME/CFS?

Symptom: Palpitations

ME Essential Winter 2021

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?

Dysautonomia: Orthostatic Intolerance (OI) and Postural Orthostatic Tachycardia Syndrome (PoTS)

ME Essential Summer 2021

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?

Investigations: Magnetic Resonance Imaging (MRI)

ME Essential Summer 2021

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?

Diagnosis: Blood Test

ME Essential Winter 2020

We keep hearing about different abnormalities that researchers are finding in the blood of people with ME and with brain scans. So why aren’t any of these tests, especially the new one from Professor Ron Davis’s group in America, being used by doctors to help confirm that someone has ME – or does not have ME?

Nomenclature: ME/CFS

ME Essential Autumn 2018

Is there a simple reason why the ME Association also uses the term myalgic encephalopathy instead of myalgic encephalomyelitis?

Charles Shepherd

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