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: Diet
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?
Caffeine-containing drinks – are they safe if you have ME?
I know I probably drink far too much coffee – about 5 cups a day – but it helps me to ‘wake up' in the morning and stay more alert during the day. But what do we know about the effect of caffeine on the brain? Is it actually harmful or beneficial to people with ME/CFS?
What is Gastroparesis?
What is gastroparesis and is there a connection with ME/CFS?
Weight-loss injections
Like many people with ME I have put on quite a lot of weight and am now unflatteringly classified by my doctor as being obese. Weight-loss diets haven't had much effect and having read all the publicity about these new weight-loss injections I would like to try one.
My GP says he cannot prescribe these injections. So it looks as though my only option is to use an online private medical service – which I'm reluctant to do having read about some of problems that people have had.
Are these injections safe to use if you have ME? And does the MEA have any feedback from people with ME who have been using them?
‘Clean food’
Three years ago I asked my previous GP practise for a consultation with their dietitian. They refused.
I changed to a much better practice seven months ago, but I would prefer not to deal with them on this matter as they are all completely ignorant about ME.
I was vegetarian for 29 years and transitioned to a vegan lifestyle 11 months ago. I’m convinced that it is the best I can do for my body as every animal product causes inflammation. And I’m definitely feeling the benefit of clean food.
Some specific advice with regard to the implications for ME would be much appreciated.
Symptoms: Bloating
Like many people with ME I have what my doctor calls irritable bowel symptoms. These include having colicky stomach pain and constipation. But the worst part is the bloating – where my tummy often feels full and uncomfortable. A nutritionist suggested an elimination diet but that didn’t help.
Is there anything else worth trying?
Folic Acid Deficiency
A recent blood test has shown that my folic acid levels are low. My GP thinks this may be due to my rather restrictive diet. But could folic acid deficiency be caused by ME/CFS?
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?
ME/CFS Specialist Services
The new NICE guideline was published a year ago. But here in Northamptonshire we still don’t have a specialist ME/CFS service where GPs can refer people for help with either diagnosis or management. And there doesn’t appear to be any formal arrangement with a referral centre anywhere else that GPs can refer people to. I think this is unacceptable. So I am going to raise this with my MP – hopefully by arranging a meeting. Do you have a brief summary of the key points that I need to make?
Management: Heart Health & ME/CFS
Can I ask what the advice is on heart health for people with ME? As most of us can’t exercise, how do we maintain a healthy cardiovascular system? Is a healthy diet enough?
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).