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: Symptoms
Post-exertional malaise – is it unique to ME/CFS?
I know what it’s like to have post-exertional malaise (PEM) and it’s good to see that PEM is now being recognised by NICE as one of the four key symptoms that are required to make a diagnosis of ME/CFS.
But is PEM unique to ME/CFS? And are there any other medical conditions where people experience PEM?
Muscle twitching/fasciculations
Unlike some people with ME, I don’t have a big problem with muscle pain. But I do get muscle twitching, especially when I’m tired or going through a ‘bad patch’. The twitching not only affects the big muscles in my arms and legs – it sometimes affects muscles on the face and makes my eyelids twitch as well! Is this a recognized problem in ME? And is there anything I can do to relieve it?
Driving
Do you think ME/CFS should be a notifiable medical condition with the DVLA?
Should people with ME/CFS notify the DVLA that they are still driving?
Symptoms: Gradual deterioration
I’m in my late forties and have had ME for over 10 years. For the past few years it has been fairly stable with occasional exacerbations, normally when I get an infection. But I’ve recently noticed a gradual deterioration in almost all of my ME symptoms. I don’t have any new or unusual symptoms and there are no obvious reasons for this deterioration in health – infection, stress etc. I’m reluctant to see my GP – who knows very little about ME – but I am starting to feel concerned.
Symptoms: Bloating
Like many people with ME I have what my doctor calls irritable bowel symptoms. These include having colicky stomach pain and constipation. But the worst part is the bloating – where my tummy often feels full and uncomfortable. A nutritionist suggested an elimination diet but that didn’t help.
Is there anything else worth trying?
Diagnosis: “Not feeling well”
I have all the characteristic symptoms of ME/CFS – exercise-induced fatigue, cognitive dysfunction, unrefreshing sleep, orthostatic intolerance etc – and my illness followed an acute viral infection. I’ve now been ill for over three years and in addition to all these symptoms I wake up every day just “not feeling well’. I know I’m not alone in feeling this way and wonder why this symptom isn’t ever included in descriptions of this illness.
Symptoms: Post-Exertional Malaise (PEM)
What is Post-Exertional Malaise and how can it best be managed?
Folic Acid Deficiency
A recent blood test has shown that my folic acid levels are low. My GP thinks this may be due to my rather restrictive diet. But could folic acid deficiency be caused by ME/CFS?
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?
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.
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 a Health Care Professional you can sign-up to receive ME Medical magazine (people with ME/CFS can also nominate their HCP by completing the sign-up form).