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: Inflammation
Does ME involve spinal cord inflammation?
Earlier this year, I suddenly developed severe back pain, loss of balance and was unable to walk in a straight line. I was sent to casualty where I had a CT and MRI scan. I was then diagnosed as having severe spinal inflammation.
The MEA purple book states that there is no evidence of brain or spinal inflammation (= encephalomyelitis) in ME/CFS.
But are we missing something here? Could symptoms such as back pain, poor coordination and abnormal sensations that are commonly reported in ME be caused by inflammation in the spinal nerves?
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?
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!
Blood: Clots (Thrombosis)
Are people with ME more likely to develop blood clots? I ask because I am due to go into hospital for some quite major surgery and will be fairly immobile for some time afterwards. The hospital consultant has queried whether people with ME are at increased risk from developing blood clots. I also understand that blood-thinning drugs are sometimes given after an operation to people who have risk factors for developing blood clots.
Functional Limitations: Limb Movement and Use
A friend of mine has had severe ME/CFS for several years and been totally bedbound for the last three. At the beginning of March, within the space of about forty eight hours, she suddenly lost most of the normal functioning and strength of her arms and hands. By turns, depending on which arm had been used the more, first one and then the other hung useless and intermittently painful by her side for a few days. She has since regained some of what she lost but the improvement now seems to have plateaued off. Her fingers remain swollen, she can barely hold a pen to sign her name and needs both hands to operate the switch of her bedside lamp. We surmise that these difficulties may have their origin in inflammation of nerve cells but we are aware that this cannot be proved. We would like to know whether similar problems have been documented in other cases and, if so, whether there is any treatment that has been found helpful.
Rheumatoid Arthritis
I’ve always had occasional joint pains since developing ME/CFS three years ago but they are definitely getting more frequent and painful. As both my mum and aunt have rheumatoid arthritis, I’m worried that I may also be developing arthritis. My GP isn’t too concerned as there isn’t any swelling or signs of inflammation, but I’m still not happy. What is the difference between joint pains in ME/CFS and true arthritic joint pain?
Nomenclature: ME/CFS
Is there a simple reason why the ME Association also uses the term myalgic encephalopathy instead of myalgic encephalomyelitis?
Mast cell disease
I've read on the internet that there is a condition called mast cell disease that has a number of symptoms that overlap with ME/CFS. Mast cell disease can also cause allergic symptoms. I've asked my GP about this but she doesn't seem to know anything about this disease. Is this something that I ought to pursue?
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
Neuroinflammation
I keep reading about what is called ‘neuroinflammation' in relation to research into ME/CFS. I assume this means inflammation in the nervous system. But is this the same as encephalomyelitis (the E in ME)? I know that encephalomyelitis is largely dismissed by many doctors and is the reason why some doctors refuse to even use the name ME/ myalgic encephalomyelitis.
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.
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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).
