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: ME/CFS Biobank
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?
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?
Viral Infections: Reactivated
I’ve been reading some interesting new research which indicates that reactivation of viruses that lay dormant in the body after the initial infection could be a cause of Long Covid. The reasoning seems to be that Covid infection activates the body’s immune system and this results in the reactivation of viruses that have been lying dormant and harmless in the body but now become active again and are capable of causing symptoms. Given the overlaps between Long Covid and ME could this be happening here as well? And has any research been done into this in ME?
Fibromyalgia: Autoimmunity
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?
Medical Research: Volunteering
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?
Prevalance: Population Estimates
The MEA always uses a figure of around 250,000 when you refer to the number of people in the UK who have ME/CFS. But where does that figure come from? And how accurate is it?
Diagnosis: Blood Test
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?
Blood Test: Platelet Count
Has any link has been found regarding blood platelet abnormalities and ME/CFS? Over the past 3 years, my platelet levels have all been consistently higher than normal. On two occasions this has been due to infections. On other occasions, the inflammatory markers in my blood were normal – as was everything else. I’ve looked online for an explanation, but there are so many research papers I wasn’t sure where to start.
Blood Test: Creatine Kinase
I was interested to read about the new research study from the ME Biobank that looked at the results from all the common blood tests that should be arranged before a diagnosis of ME is made. This study found that people with severe ME often have a reduced blood level of creatine kinase (CK) – something that I also have. But when I asked my doctor to explain why I was told that it was ‘nothing to worry about’. So what is creatine kinase? And why do people with severe ME have a reduced level of CK in their blood?
Immune system research at the ME Biobank
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: 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.