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: NICE Guideline
Diagnosing ME/CFS
I have had ME-type symptoms for well over a year following a viral infection. Unfortunately, my GP says that he doesn’t feel confident to make a diagnosis as he knows almost nothing about this illness. I have now been referred to a local ME/CFS service but find that this service does not diagnose ME. Why is this?
Low-dose naltrexone (LDN)
Having read a large number of reports from people who are taking LDN, I would like to give it a try. My GP says that he knows nothing about this drug being used in ME/CFS and has refused to prescribe it on the NHS. I also see a consultant rheumatologist privately and he won't issue a private prescription.
I know that there's a pharmacy in Scotland that supplies LDN but I want to use it under proper medical supervision. Why is it so difficult to just try taking a drug that may be of benefit?
Biomedical research
How can we ensure that important biomedical research information about the cause and treatment of ME/CFS is getting through to policy makers and health professionals so that people are treated correctly?
Do I have Long Covid or post Covid ME?
Two years ago I was very fit and healthy young adult. I then caught Covid. It was more like having a very bad cold and flu combined. I was managed at home with online GP consultations and didn’t have any serious chest problems. So I don’t have a persisting cough or breathlessness. My main symptoms are very similar to ME – debilitating fatigue, brain fog, muscle pain, problems with temperature control and post-exertional malaise.
My doctor has diagnosed Long Covid. But do I really just have post Covid ME?
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?
Q fever fatigue syndrome
A friend of mine who lives on a farm had a short-lived flu-like illness last year and has failed to recover. She now has severe fatigue and a lot of ME-type symptoms. Following a GP referral to an infectious disease specialist she has been diagnosed as having Q fever fatigue syndrome.
Is this the same as ME? And is there any treatment?
Treatments: Informed consent
The new NICE guideline on ME/CFS contains some very helpful information and recommendations on the way in which doctors should listen to and believe their patients who have ME/CFS (as well as parents of children with ME) and the way in which ME should be managed. But this is only guidance.
Is there anything from the General Medical Council that would be relevant to situations where treatment decisions are being discussed and where there are potential risks as well as benefits?
I ask from the point of view of personal experience: My GP wanted me to try a course of antidepressants- even though I am not suffering from depression. It was a well-meaning encounter but he wasn’t really happy when I explained that there wasn’t any evidence to show that ME can be treated with antidepressants.
What are co-morbid conditions?
I see that the new NICE guideline on ME/CFS stresses the importance of checking that people with ME/CFS don’t also have what are called comorbid conditions. Could you explain what a comorbid condition is. And if you have ME/CFS does that mean that you are likely to develop a number of other health conditions as well?
Symptoms: Post-Exertional Malaise (PEM)
What is Post-Exertional Malaise and how can it best be managed?
Treatments: Ampligen
I know that you have answered questions about the failure of people in the UK to have access to Ampligen – a drug that has immunomodulatory actions and is used to treat ME/CFS by some doctors in the USA. However, I’ve been told that the drug regulatory authority in America (the FDA) has now approved its use in treating Long Covid. So does this mean that doctors in the UK can now start prescribing Ampligen?
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).