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: Headache
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: Low Dose Steroids
I’m having joint problems at the moment and my consultant wants to inject a steroid into the joint to calm things down. I’m concerned that this could make my ME/CFS worse because I thought that people with ME/CFS should not take steroids. What do you suggest I do?
Symptoms: Slurred Speech (Dysarthria)
Can ME/CFS cause slurred speech? This is something that I occasionally have to cope with – especially when I am very feeling very tired and/or haven’t slept well and am not able to concentrate properly. Should I see my doctor about it?
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?
Addison's Disease
I was interested to see the item on Addison’s disease in the Winter issue of ME Essential as I have a close friend with this rare disease and it obviously has some interesting symptom overlaps with ME/CFS. So is there any evidence that adrenal gland failure, and steroid hormone production, could also be involved in ME/CFS? If so, would it be worth looking at steroids as a possible form of treatment for ME/CFS?
Menopause
I’m in my late forties and have had mild to moderate ME/CFS for several years. Over the past few months I’ve been feeling more tired than usual, my concentration has got worse, I often feel hot at night and I have vaginal dryness. Not surprisingly, my doctor has decided that I’m entering the menopause and has recommended HRT – which I’m reluctant to use as I don’t like taking drugs. I’ve also found that what used to be only occasional attacks of migraine have become a much more regular occurrence. Is this unusual? Or can the menopause have an adverse effect on both ME/CFS and migraine-type headaches?
Treatment: 5-HTP (5-Hydroxytryptophan)
An alternative health practitioner has recommended that I take a 5-HTP supplement for my muscle pain and headaches, but I’m very wary of upsetting my heart and nervous system – especially my heart rhythms which are all over the place at the moment. Is there any evidence that this supplement, which I had never even heard of, is both safe and effective for use in ME?
Symptoms: Muscle Cramps
Muscle pain has always been a significant part of my ME/CFS. But I've now developed painful episodes of muscle cramp — especially at night. My GP has prescribed quinine —which has helped a bit. Is there anything else you can recommend that might help?
Symptoms: Jaw pain in ME/CFS
I’ve been having pain in and around my jaw for several months. My GP can’t find anything wrong but I’ve read that there is a condition called temperomandibular joint disorder which causes jaw pain and is said to be more common in ME. Is this true? And what can I do when I have a GP who doesn’t seem to know anything about how to diagnose or treat this condition?
Lyme Disease
I know that ME/CFS and Lyme disease have a lot of symptoms in common and that some people with Lyme are being misdiagnosed as having ME/CFS. But what are the main symptoms of Lyme 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).
