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: Immune System
T-cell dysfunction
I keep reading research paper reports which refer to immune system dysfunction or exhaustion and abnormalities with what are called T-cells in ME/CFS. Could you explain in language that non-scientists can understand what T-cells are and how abnormalities in T-cells could be causing ME/CFS and/or providing clues for possible drug treatment?
Tonsils and adenoids
Is there a presence of enlarged tonsils and adenoids in adults who have ME/CFS? I was told by an ENT consultant that they shouldn’t normally be visible or prominent in adulthood. He wasn’t concerned and didn’t think an operation was necessary. However, this set me wondering about why are they are enlarged and when an operation might be necessary.
Low-level Immune System Activation
I keep seeing references to ‘low level immune system activation’ being an important research finding in ME/CFS. But what does this mean in language that I can understand?
Prevalence: Gender
Does anyone know why ME seems to affect more women than men?
I know quite a few people with ME and about 80% are women. This is the same sort of ratio that appears in comments on MEA Facebook – although I accept that women may be better at communicating their feelings than men!
Has anyone done any research into this?
Is ME/CFS an autoimmune disease?
I know that ME and CFS are both classified by the World Health Organisation as a neurological disease. But I’ve also seen statements on the internet to say that ME is now being classified as an autoimmune disease. Is this correct?
Treatment: Hyperbaric Oxygen Therapy (HBOT)
Has there ever been a clinical trial to assess the use to hyperbaric oxygen (HBO) in ME? I know that HBO is being used by people with multiple sclerosis as well as ME – so it seems that there are positive effects in the case of neurological diseases. I’ve also read that a clinical trial involving people with Long Covid has found some beneficial effects.
Research: Post-Mortem
What is happening to post-mortem tissue research into ME/CFS at the moment? Is the ME Association still funding and carrying out any postmortem research? And have any significant abnormalities been found in the post-mortems that have been carried out so far?
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?
Treatments: Antibiotics
Please could you provide some guidance on the use of antibiotics if you have ME/CFS. I’ve read about people on internet discussion forums who have been prescribed antibiotics as a treatment. On the other hand, some people say that antibiotics are best avoided if you have ME/CFS.
ME/CFS Specialist Services
The new NICE guideline was published a year ago. But here in Northamptonshire we still don’t have a specialist ME/CFS service where GPs can refer people for help with either diagnosis or management. And there doesn’t appear to be any formal arrangement with a referral centre anywhere else that GPs can refer people to. I think this is unacceptable. So I am going to raise this with my MP – hopefully by arranging a meeting. Do you have a brief summary of the key points that I need to make?
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:
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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).