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: Infection
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?
Temperature control
I know that ME often causes problems with temperature control and this can result in people feeling cold and possibly having a lower than normal body temperature.
I have a different problem in that I have a semi-permanent and slightly raised temperature. It’s not causing any particular problems – so I haven’t consulted my doctor.
Can this happen in ME as well?
What is the best method of contraception if you have ME?
My partner and I have a dilemma regarding our choice of contraception. I have mild to moderate ME/CFS. My husband is fit and well. We want to use a safe and reliable method but we aren’t having much luck!
I had to give up using ‘the pill’ because of side-effects, including migraine-type headaches. So we are reluctantly using barrier protection. But this isn’t ideal when you are not wanting to have another baby for both health and practical reasons.
I’ve thought about using a coil but am worried about whether having a ‘foreign body’ inside could cause more problems with my immune system. I’m also worried about the risk of infection, having had a pelvic infection in the past.
There doesn’t seem to be a simple solution and my GP isn’t very helpful when it comes to discussing the remaining options.
Leptospirosis fatigue syndrome
This is a rather unusual question! One of my neighbours, who is a very fit young man in the army, has returned from Kenya with what has been diagnosed as a post-infectious fatigue syndrome that sounds very much like ME. It developed after he caught an infection called Leptospirosis which he says is transmitted from animals, including rats, through their infected urine.
I’m now feeling a bit concerned because, although I love birds, I have a neighbour who has bird tables all over the garden and this brings in rats which also come into my garden. So should I be worried about catching this disease?
Q fever fatigue syndrome
A friend of mine who lives on a farm had a short-lived flu-like illness last year and has failed to recover. She now has severe fatigue and a lot of ME-type symptoms. Following a GP referral to an infectious disease specialist she has been diagnosed as having Q fever fatigue syndrome.
Is this the same as ME? And is there any treatment?
Is ME/CFS an autoimmune disease?
I know that ME and CFS are both classified by the World Health Organisation as a neurological disease. But I’ve also seen statements on the internet to say that ME is now being classified as an autoimmune disease. Is this correct?
Treatment: Hyperbaric Oxygen Therapy (HBOT)
Has there ever been a clinical trial to assess the use to hyperbaric oxygen (HBO) in ME? I know that HBO is being used by people with multiple sclerosis as well as ME – so it seems that there are positive effects in the case of neurological diseases. I’ve also read that a clinical trial involving people with Long Covid has found some beneficial effects.
Gilbert's Syndrome
A few months ago I noticed that the whites of my eyes had turned slightly yellow. It turned out that I had a mild episode of jaundice. My GP was a bit mystified – so I was sent to see a liver specialist who diagnosed a condition called Gilbert’s Syndrome. The specialist said it was nothing to worry about. However, as he had seen other people with ME/CFS with the same condition, he wondered whether there may be a link. Is this so?
Low sodium levels – Hyponatraemia
I’ve been feeling generally unwell and more fatigued – mentally and physically, for the past few months.
My GP ordered some routine blood tests – all of which were normal apart from having a slightly lower than normal level of sodium in the blood. My GP isn’t too concerned and is going to repeat the blood test. Could a low sodium level be caused by having ME?
Treatments: Antibiotics
Please could you provide some guidance on the use of antibiotics if you have ME/CFS. I’ve read about people on internet discussion forums who have been prescribed antibiotics as a treatment. On the other hand, some people say that antibiotics are best avoided if you have ME/CFS.
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).