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: Covid-19
Research: DecodeME
I have developed ME after catching Covid-19 last year and have a few quick questions about the DecodeME study. Can I still sign up to participate? When will we know the results? Will I have access to information about my own DNA? Will the study also be including people with Long Covid?
Vaccinations: Covid-19
I appreciate that people with ME/CFS can have an exacerbation of symptoms following any type of vaccination, and that a significant minority have had a more severe and persisting adverse reaction to the Covid vaccines. However, I am still keen to continue having this protection so as long as the Covid-19 virus remains in circulation.
My 2022 Autumn Covid Booster resulted in a moderate exacerbation of ME/CFS symptoms – which lasted for about 4 weeks. So I’m querying whether it might be more sensible to allow people with ME/CFS to split the dose in half and have two smaller doses on two separate occasions. I discussed this with my GP but he wasn’t very supportive and has declined to do so. What do you think?
Post-Viral Fatigue Syndrome, Myalgic Encephalomyelitis or Encephalopathy, Chronic Fatigue Syndrome, and Long Covid
Please can you define what PVFS, ME/CFS, and Long Covid mean. I am having difficulty determining if they are the same disease or different. Thank you!
Vaccine Damage Payment Scheme
There was an interesting item on the BBC news ( https://www.bbc.co.uk/news/health-61898694 ) about the first payment being made under something called the vaccine damage payments scheme (VDPS) to the relative of someone who had suffered a fatal adverse reaction to the Oxford Astra Zenca COVID-19 vaccine.
The BBC article also referred to a lady who “…..was unable to work for a year after developing VITT (vaccine-induced immune thrombotic thrombocytopenia) and struggles with chronic fatigue, migraines and brain fog and fears her job could be at risk – but believes she will not be considered 60% disabled”.
As someone who has had a significant and prolonged (now over a year) relapse of ME following this vaccine do you think it is worth making a claim? And does this scheme also cover people who have developed ME after other types of vaccination?
Covid-19: Treatments
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!
Long Covid: Vaccinations
Long Covid seems to have a lot of symptoms in common with ME/CFS and I know that the MEA has been pointing this out since it soon became apparent that some people were not returning to normal health after catching Covid-19.
One of the important differences between Long Covid and ME/CFS appears to be how people with both conditions react to vaccinations. Those with ME/CFS often report an exacerbation of ME/CFS symptoms and this can sometimes be quite severe and persistent. But there are now numerous reports about people with Long Covid feeling a lot better after having a Covid-19 vaccination and in some cases even recovering from Long Covid. Do we know why this is occurring? And could it have any implications for ME/CFS?
Long Covid: ‘Cytokine Storm'
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
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?
Treatment: High-dose Vitamin C
I have read about the use of high dose vitamin C injections being used to treat people with coronavirus infection. Could this also be used to treat 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.
- Review the largest range of literature covering all aspects of living with ME/CFS. Download detailed information about symptoms, diagnosis, management, co-mordities, 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 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: meconnect@meassociation.org.uk
MEDICAL DISCLAIMER
Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.