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: Bowel
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?
Symptoms: Joint Pain and Irritable Bowel
I know that in addition to all the classic diagnostic symptoms of ME there are a considerable number of other symptoms that can sometimes occur. But should we always go and see our GP every time a new symptom appears? Or when an existing symptom changes character or gets significantly worse? In my case, after several years of having ME, I’ve now developed intermittent joint pains (without any swelling or redness) and bowel symptoms (mainly loose motions with occasional stomach cramps and bloating) that sound like irritable bowel syndrome. I haven’t yet mentioned these symptoms to my new GP – who tends to blame everything on ME! I don’t want to be seen as a hypochondriac, turning up at the doctors every time I don’t feel well. At the same time, I don’t want to find that a new and treatable medical condition is being missed
Symptom: Palpitations
Like many people with ME I have occasional palpitations. Does this mean that I might have some form of underlying heart disease? Or is this just another part of having ME? And are there any drug treatments that might be helpful?
Dysautonomia: Orthostatic Intolerance (OI) and Postural Orthostatic Tachycardia Syndrome (PoTS)
I keep reading about orthostatic intolerance, PoTS and postural hypotension and how they can all be symptoms of ME/CFS. But what do all these medical terms mean? What is going wrong? And are all these symptoms and syndromes related to each other?
Diet and Nutrition: Malnutrition
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?
Irritable Bowel Syndrome
Like many people with ME I also have irritable bowel syndrome (IBS). I have the MEA information leaflet on IBS and have had most of the treatments listed for my various bowel and stomach symptoms. But my symptoms are getting worse, especially the bloating, stomach pain and back pain. My fatigue levels have also increased. I am female, in my early 50s, and have had IBS symptoms for about three years. Do you have any other suggestions?
Blood Flow: Oxygenation
I know there has been some interesting research involving neuroimaging studies and that this has demonstrated defects in blood flow to certain key parts of the brain. But does this research mean that people with ME/CFS have low levels of oxygen entering the brain? If so, does it also explain some of the key brain symptoms – cognitive dysfunction in particular? And could it lead to new forms of drug treatment?
The Microbiota: Faecal Microbiota Transplantation (FMT)
I’ve read some positive feedback on the internet about a new form of treatment called a faecal microbiota transplant (FMT). It is supposed to help with a number of chronic conditions, including ME. Apparently there is a private gut clinic in the UK that is carrying out this type of treatment. Do you know if and how FMT works? Is it safe? And how much will it cost?
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:
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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).
