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

Covid-19: Treatments

ME Essential Summer 2022

I'm looking for some guidance on possible treatments for Covid. I care for my partner who is bedbound with severe ME/CFS. He hasn’t been able to get vaccinated due to also having multiple allergies and the possible anaphylaxis risk. Vaccination would therefore have do be done in hospital and he isn't well enough to go to hospital. We are still shielding as a household - although the rest of us are triple-jabbed - to avoid the risk of bringing in Covid and infecting him. However I'm becoming increasingly concerned that this virus isn't going to go away and that it's going to be harder to be able to protect him. So I'd like to have a possible treatment plan agreed in advance with the GP, in case he catches Covid-19. However, the NHS list for those available for antiviral drug treatment doesn't specify ME/CFS. Any thoughts or advice welcomed!

Septicaemia (Sepsis)

ME Essential Autumn 2021

Could you say something about sepsis and ME? A friend of mine who has ME has been seriously ill in hospital with sepsis but is now back home again. The doctors say that she is going to need a prolonged period of recovery from the effects of sepsis. This has also caused a significant relapse of her ME. Are people with ME more at risk from developing sepsis if they just have a minor injury or infection? And is there anything we should be doing to reduce the risk of developing sepsis?

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.

Allergies: Hay Fever

ME Essential Autumn 2020

Is hay fever more common in people with ME? I’m in my midthirties and never had hay fever before being diagnosed with ME several years ago. Every summer and autumn I now have the full list of hay fever symptoms - runny nose, blocked nose and red itching eyes. This year it has been worse than ever and my chest has been wheezy as well. MY GP thinks it may have triggered mild asthma. And is it safe to use a steroid nasal spray for hay fever if you have ME?

Management: Swimming

ME Essential Autumn 2020

Like some people with ME/CFS I’ve made a significant degree of improvement over a number of years. I’m fairly stable, mobile, able go for longish walks, and manage to do some part-time work. A well-intentioned friend who goes wild water swimming has suggested that I ‘give it a try’. She claims it can have all kinds of health benefits, including “resetting body clocks that have gone wrong”. She even pointed me to some research about the benefits of cold water swimming for conditions such as arthritis. I’m very open-minded about trying anything that might work. But I’m concerned that this could actually make ME/CFS worse.

Aetiology: Immune System

ME Essential Summer 2020

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?

Diagnosis: Blood Test

ME Essential Winter 2020

We keep hearing about different abnormalities that researchers are finding in the blood of people with ME and with brain scans. So why aren’t any of these tests, especially the new one from Professor Ron Davis’s group in America, being used by doctors to help confirm that someone has ME - or does not have ME?

Diet and Nutrition: Malnutrition

ME Essential Summer 2019

I ask because there is a great deal of positive discussion on internet forums about the benefits of unproven special diets, restrictive and exclusion diets, and dietary supplements. At the same time, very little attention is paid to the dangers of cutting out or reducing the intake of specific food groups such as dairy or wheat. And people with more severe ME may have significant problems in obtaining groceries, preparing meals and even eating a full meal. All of which could be having an adverse effect on their overall health. So, do we need to start looking at diet and nutritional status in ME from both a clinical and research point of view?

Treatment: Cyclosphosphamide

ME Essential Spring 2018

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?

Immune system research at the ME Biobank

ME Essential Autumn 2017

I saw a report on the MEA website in June about Professor Eleanor Riley presenting some findings from a Biobank immune system study to an ME/CFS research conference in Chicago. Please could you tell us something about the immunological studies that are being carried out at the Biobank?

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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