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: Bladder
Ongoing urinary bladder infections
My son is almost 23 and autistic. He also has post-Covid ME and, since 2023, has been mild to moderate.
He is currently undergoing investigations into recurrent urinary infection and I wonder if you are aware of any links to ME/CFS and whether this is a common problem?
He’s been given four courses of antibiotics, been told to drink cranberry juice and to take ibuprofen, as well as avoiding caffeine and juices. He’s now awaiting scans and investigative procedures to try to get to the root of this after I persisted to advocate and demanded they look into biofilms and kidney issues. The process has dragged on for five months at the GP surgery, until I told them I would take the matter further and that it’s not good enough to suggest it is mental health-related or due to his slower pace of life.
The fact that I also have ME/CFS means that, sadly, I’m used to the gaslighting and medical negligence we tend to receive.
Do you have any tips for dealing with ongoing urinary bladder infections, such as how to eat to detox the liver and urinary system and maybe how to tackle medical ignorance when it comes to ME/CFS?
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: Overactive Bladder (OAB)
I’m female, in my early forties, and have had moderate ME/CFS for about five years. More recently, I've been having a number of bladder symptoms – in particular a frequent and sudden urge to pass what are only quite small amounts of urine. I am also having to go to the bathroom on several occasions during the night.
My doctor thought I might have cystitis – even though I don’t have any pain. However, there were no signs of infection on repeated urine tests. My GP now says that I probably have an “overactive bladder”, and that while there are drugs that can definitely help to calm down an irritable bladder they can cause side-effects, including drowsiness.
Is having an overactive bladder more common in ME/CFS? And is there any other form of treatment – as this is causing me a lot of distress and restricting what I’m able to do outside the house.
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?
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?
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.
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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 a Health Care Professional you can sign-up to receive ME Medical magazine (people with ME/CFS can also nominate their HCP by completing the sign-up form).