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: SLE
Blood Test: Creatine Kinase
I was interested to read about the new research study from the ME Biobank that looked at the results from all the common blood tests that should be arranged before a diagnosis of ME is made. This study found that people with severe ME often have a reduced blood level of creatine kinase (CK) – something that I also have. But when I asked my doctor to explain why I was told that it was ‘nothing to worry about’. So what is creatine kinase? And why do people with severe ME have a reduced level of CK in their blood?
Treatment: Cyclosphosphamide
I was very disappointed to see that the big clinical trial of Rituximab being carried out in Norway had failed to show any benefit – so it looks as though it may be the end of road for this particular drug. But I noticed in the ME Association statement on the trial results that the Norwegian doctors are carrying out another clinical trial to assess the safety and benefits of a drug called cyclophosphamide. I know someone with arthritis who takes this drug and finds it very useful. But why could it be of use in ME/CFS? And am I right in thinking that it can also has some very unpleasant side-effects?
Blood Test: Antinuclear Antibody (ANA)
I have a new and very thorough GP who has decided to thoroughly re-assess my state of health. So he arranged for a number of blood tests – some of which are not usually used to diagnose ME/CFS but are referred to in the investigation section of the MEA purple book. Everything is normal – apart from me having an ANA positive result with a low antibody titre. What does this mean? Should I be concerned?
Neuroinflammation
I keep reading about what is called ‘neuroinflammation' in relation to research into ME/CFS. I assume this means inflammation in the nervous system. But is this the same as encephalomyelitis (the E in ME)? I know that encephalomyelitis is largely dismissed by many doctors and is the reason why some doctors refuse to even use the name ME/ myalgic encephalomyelitis.
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.
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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).
