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

Driving

ME Essential Winter 2024

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

ME Essential Winter 2024

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.

Diagnosis: Not feeling well

ME Essential Winter 2023

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)

ME Essential Summer 2023

What is Post-Exertional Malaise and how can it best be managed? 

Folic Acid Deficiency

ME Essential Summer 2023

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

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?

Treatment: Modafinil

ME Essential Summer 2023

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.

Symptoms: Pins and Needles

ME Essential Spring 2023

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?

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?

Vaccinations: Covid-19

ME Essential Spring 2023

I appreciate that people with ME/CFS can have an exacerbation of symptoms following any type of vaccination, and that a significant minority have had a more severe and persisting adverse reaction to the Covid vaccines. However, I am still keen to continue having this protection so as long as the Covid-19 virus remains in circulation.

My 2022 Autumn Covid Booster resulted in a moderate exacerbation of ME/CFS symptoms – which lasted for about 4 weeks. So I’m querying whether it might be more sensible to allow people with ME/CFS to split the dose in half and have two smaller doses on two separate occasions. I discussed this with my GP but he wasn’t very supportive and has declined to do so. What do you think?

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.
  • Review the largest range of literature covering all aspects of living with ME/CFS. Download detailed information about symptoms, diagnosis, management, co-mordities, employment, education, related health conditions, The 2021 NICE Clinical Guideline, welfare benefits etc.
  • Join the ME Association as a member and you'll receive the highly-rated ME Essential magazine, and you can ask questions of the charity’s expert advisers including Dr Shepherd.
  • Contact us via the ME Connect Telephone Helpline (open 365 days a year) and speak to one of the national team of fully-trained volunteers who waiting to provide information and support. 
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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). 

Please note: The answers comprising Medical Matters were accurate at the time of printing. A publication date accompanies all listed entries. We will endeavour to keep Medical Matters updated as information changes, but if you would like to comment, please email: meconnect@meassociation.org.uk

MEDICAL DISCLAIMER

Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.

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