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: Energy Management
Symptoms: Post-Exertional Malaise (PEM)
What is Post-Exertional Malaise and how can it best be managed?
ME/CFS Specialist Service: Referral
After having a nasty viral infection (probably glandular fever) at the beginning of the year I have been struggling to get an explanation from my GP as to why I haven’t got back to normal health. He has now decided that I probably have post-glandular fever ME/CFS. However, my GP admits that he doesn’t know very much about how to manage ME/CFS. I have asked for a referral to a specialist ME/CFS service but it turns out that we don’t have one. I then asked if I could be referred outside the local area to a service that has good reports from people I have heard from. However, I’m finding it very difficult to get this moving because my GP says I can’t choose where I want to be sent. Please could you explain what my rights are?
Care and Support Plans
I very much welcome the recommendation in the new NICE guideline that everyone with ME/ CFS should have a personalised care and support plan. But is this actually happening in practice anywhere? I have been under the care of both my (very good) GP and a hospital-based ME/ CFS service for several years. But nobody has ever offered to prepare such a plan. And if I did have a care and support plan, who would prepare it and what would it consist of?
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?
The 2021 NICE Guideline ME/CFS: Regrets
I know you feel that the new NICE guideline is a major improvement on the first one. So do I. But do you have any concerns, disappointments or disagreements on the content?
Management: Swimming
Like some people with ME/CFS I’ve made a significant degree of improvement over a number of years. I’m fairly stable, mobile, able go for longish walks, and manage to do some part-time work. A well-intentioned friend who goes wild water swimming has suggested that I ‘give it a try’. She claims it can have all kinds of health benefits, including “resetting body clocks that have gone wrong”. She even pointed me to some research about the benefits of cold water swimming for conditions such as arthritis. I’m very open-minded about trying anything that might work. But I’m concerned that this could actually make ME/CFS worse.
Functional Limitations: Energy
I have a diagnosis of both ME/CFS and fibromyalgia. For the last couple of months I get a weird thing happening. I can be fine one minute but the next I struggle to keep my eyes open. It’s as though someone has drained all the energy out of my body and I usually end up falling asleep for a few hours. I don’t even have to have done anything but just sitting in my chair. Is this normal for ME/CFS? Or is it something else?
Diabetes
Knowing that lack of exercise and weight gain are two things that increase the risk of developing type 2 diabetes, is this type of diabetes more common in people with ME? I ask because I noticed I was getting thirsty, drinking more water than usual, and was also passing urine more frequently. I went to see my GP for some blood and urine tests and she confirmed that I had developed type 2 (non insulin requiring) diabetes. The good news is that a change in diet and weight loss are definitely bringing things under control and it doesn’t look as though I am going to need treating with drugs.
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.
- Contact us via email or social media: Facebook, Instagram, Twitter, LinkedIn.
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).
