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: Research

Treatment: Ampligen

ME Essential Summer 2022

I have read a lot of information about the use of a drug called Ampligen on the internet. While it is being given to people with ME in America it does not appear to be available here in the UK My understanding is that Ampligen is being used by a number of doctors who specialise in ME in America and that some people with ME have gained considerable benefit. When I asked my GP about Ampligen he knew nothing about it and did not want to even look at the information I took to the consultation, or investigate further. Even if it means paying privately I would like to give Ampligen a try. I am prepared to accept that it may not work and that it does have side-effects.

Symptoms: Vision

ME Essential Spring 2022

I have ME/CFS and 2 years ago I had to move to varifocal glasses. I had my eyes tested in April and had to return those glasses as I needed a different prescription. I have had them retested today, and needed another prescription. The optician said that my prescription seems to change as my condition fluctuates. What is happening to eyesight as a result of ME/CFS and is there any research in this area? I get a lot of migraines and I think this is because of the problems I have with my vision.

Treatment: Coenzyme Q10

ME Essential Winter 2021

My nutritionist has advised me to start taking a supplement called coenzyme Q10 (CoQ10) which, she says, will boost my energy levels and improve my memory problems. What is CoQ10 and is this claim justified? Are there any side-effects? Can I take it with prescription-only medicines?

The 2021 NICE Guideline ME/CFS: Regrets

ME Essential Autumn 2021

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?

Fibromyalgia: Autoimmunity

ME Essential Autumn 2021

There was an interesting report in The Guardian newspaper about some new research into fibromyalgia. This suggests that there is an immunological abnormality involving antibody production and that removing these harmful antibodies could be an effective form of treatment. This is a brief summary of what they found: The researchers in London took blood from 44 people with fibromyalgia and injected purified antibodies from each of them into different mice. The mice rapidly became more sensitive to pressure and cold, and displayed reduced grip strength in their paws. Animals injected with antibodies from healthy people were unaffected. Prof Camilla Svensson from the Karolinska Institute in Sweden, who was also involved in the study, said: “Antibodies from people with fibromyalgia living in two different countries, the UK and Sweden, gave similar results, which adds enormous strength to our findings.” The mice recovered once the antibodies had been cleared from their systems, which took a few weeks. This suggests that therapies such as plasma-exchange, which are designed to reduce antibody levels and are available for other autoimmune disorders, such as myasthenia gravis, may be effective in fibromyalgia patients. Given the important overlaps between ME and fibromyalgia, do you think this research is worth repeating in ME?

Genetic Predisposition: Hereditary

ME Essential Autumn 2021

I am the only person in my family to have ME that I know of. But I’ve heard that people with ME quite often have another family member with the disease. Is this true? If so, can someone with ME transmit it to their children? And has any research been carried out into the genetics of ME?

Investigations: Magnetic Resonance Imaging (MRI)

ME Essential Summer 2021

I have been referred to a neurologist who has arranged for me to have an MRI scan. This will involve the use of a dye/contrast agent called gadolinium. Is this a safe procedure to have for people with ME/CFS? Can it be used to confirm a diagnosis of ME? And can MRI brain scans cause any adverse reactions?

Medical Research: Volunteering

ME Essential Summer 2021

I have a diagnosis of ME/CFS. I have it mildly compared to most (although it still significantly impacts my life) and no other physical or mental health problems. I would really like to get involved in research into the physiology of ME/CFS. In my experience it’s all to do with the reaction of my muscles. How do I go about this please?

Long Covid: ‘Cytokine Storm'

ME Essential Spring 2021

What is a ‘cytokine storm’? I keep reading about this in relation to COVID-19. Is it related to the cytokine abnormalities that have been found in ME/CFS? And could it help to explain why some people are developing Long COVID, which seems to have very similar symptoms to ME/CFS.

Investigations: Hand Grip Strength

ME Essential Spring 2020

I was interested to read about the new research from the ME Biobank that looked at hand grip strength in people with ME. As this appears to be a good predictor of both loss of muscle strength and disease severity why isn’t it part of the examination protocol when doctors examine people with ME

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). 

Please note: The answers comprising Medical Matters were accurate at the time of printing. A publication date accompanies all listed entries. We will endeavour to keep Medical Matters updated as information changes, but if you would like to comment, please email: contact@meassociation.org.uk

MEDICAL DISCLAIMER

Medical Matters is for information purposes only. The answers provided by Dr Shepherd and the ME Association’s other expert advisers should not be construed as medical advice. We recommend that any information you deem relevant is discussed with your GP as soon as possible. It is important to obtain advice from a GP who is in charge of your clinical care, who knows you well, and who can consider other likely causes for symptoms. Seek personalised medical advice whenever a new symptom arises, or an existing symptom worsens. Don't assume that new or worsened symptoms are a result of having ME/CFS.

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