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: Post-Exertional Malaise
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?
Where can I get a two-day CPET test?
Are there any hospitals or private clinics in the UK who understand ME/CFS and are able to carry out a two-day cardio-pulmonary exercise test (CPET) – similar to the one performed at the Workwell Foundation in the US – and properly interpret the results?
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?
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?
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!
Cardiopulmonary Exercise Testing (CPET)
Why aren’t the oxygen levels of ME sufferers routinely checked?
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-mordidities, 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 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).