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: Activity Management

Symptoms: Post-Exertional Malaise (PEM)

ME Essential Summer 2023

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

Treatments: Mestinon (Pyridostigmine)

ME Essential Winter 2022

I’ve read about a drug called Mestinon being helpful for some people with ME, especially if you also have postural orthostatic tachycardia syndrome (PoTS), and I would really like to try using it. I know it can cause unpleasant side-effects but I’m willing to take a risk. Do you have any advice on how I might be able to convince my GP to prescribe it? Or do you know of any private doctors that might be willing to prescribe it?

Care and Support Plans

ME Essential Winter 2022

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

ME Essential Winter 2022

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

ME Essential Winter 2021

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

ME Essential Autumn 2021

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?

The NICE Guideline ME/CFS: Northern Ireland, Scotland, and Wales

ME Essential Autumn 2021

I know that the recommendations in the new NICE guideline apply to England. But what is the situation in Wales, Scotland and Northern Ireland where GPs often lack the necessary skills to diagnose and manage people with ME/CFS and hospital-based referral services are either poor or non-existent.

Management: Swimming

ME Essential Autumn 2020

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

ME Essential Summer 2020

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

ME Essential Summer 2018

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.

Charles Shepherd

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