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
Swimming and ME
I have been making fairly steady progress over the past year using the type of pacing recommended by the MEA. My GP, who is very helpful, has suggested that I may now be able to manage some gentle indoor swimming in a warm pool – which is something I used to really enjoy before becoming ill – in addition to my regular walking. Is this something you would recommend as part of an activity management programme?
What is graded activity?
Although I have a firm diagnosis of ME, I am thinking about asking my GP to refer me to the local ME/CFS clinic for some further help with management because my GP is very honest and says she “doesn’t know very much about how to manage people with ME”.
Having looked at the website for the local ME/CFS service, I’m a bit concerned because it seems to place quite a lot of emphasis on social and psychological support and also refers to a graded activity programme.
So what is graded activity? And is it the same as graded exercise therapy?
Symptoms: Post-Exertional Malaise (PEM)
What is Post-Exertional Malaise and how can it best be managed?
Treatments: Mestinon (Pyridostigmine)
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
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: Heart Health & ME/CFS
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?
The NICE Guideline ME/CFS: Northern Ireland, Scotland, and Wales
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
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.
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).
