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: Cytokine
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?
Long Covid Research
A huge amount of money is being spent on research into the cause and treatment of Long Covid. Given all the overlaps between Long Covid and ME/ CFS are there any benefits emerging from Long Covid research that might also help people with ME/CFS? Or is it too early to draw any conclusions?
Treatment: Low Dose Steroids
I’m having joint problems at the moment and my consultant wants to inject a steroid into the joint to calm things down. I’m concerned that this could make my ME/CFS worse because I thought that people with ME/CFS should not take steroids. What do you suggest I do?
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.
Aetiology: Immune System
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?
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?
Treatment: Tumeric & Circumin
There is little evidence to indicate that herbal and Plant remedies are of any value in treating ME/CFS, or symptoms, and can sometimes cause harm. But there are some interesting reports on the internet forums from people who say that they have been helped by taking turmeric. And I believe that there is also some interesting research evidence to show that it can help to reduce inflammation — which could be of benefit in ME/CFS. Do you have any views on this?
Symptoms: Joint pain
I've always had occasional joint pains since developing ME/CFS — as there's a history of rheumatoid arthritis (RA) in my family. I've had a blood test for RA in the past but it was negative for RA.
My joint pains have recently changed with redness and a slight swelling in some of the small joints in my hand as well as pain in the feet. The pain and stiffness is worse in the morning and diminishes as the day goes on. Is this type of joint pain consistent with ME/CFS? Or should I go back to my G
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: 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.