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
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: Fitness
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?
Treatment: Thiamine
There are “medical people” on the internet claiming that high doses of a supplement called thiamine are a safe and effective new treatment for ME. What is thiamine? Is there any evidence to support this claim? And could taking high doses of thiamine cause any harm?
Treatment: Tryptophan
I’ve read that taking a tryptophan supplement is helpful for people with ME. Is this true? And are there any side-effects?
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?
Diet and Nutrition: The Ketogenic Diet
I have read some internet discussions involving people with ME who claim to be finding benefits from using what is called the ketogenic diet. This is based on the idea that it is beneficial to switch to fats as the primary source of energy. However, I understood that glucose was the best source of ‘food fuel’ that we have. Has any research has been done in this area? And is this safe if you have ME?
Diet and Nutrition: Restrictive Diets
All kinds of strange and restrictive diets are recommended for people with ME/CFS. I know of people who have cut out loads of different food groups, especially dairy, gluten and meat. Some of them have lost weight and made themselves worse as a result. So is there any evidence that any of these restrictive diets can be helpful? And what are the potential problems?
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 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).
