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.
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Questions in the Category: Nutrition
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?
Post-Viral Fatigue Syndrome, Myalgic Encephalomyelitis or Encephalopathy, Chronic Fatigue Syndrome, and Long Covid
Please can you define what PVFS, ME/CFS, and Long Covid mean. I am having difficulty determining if they are the same disease or different. Thank you!
Treatment: Vitamin D
Can Vitamin D help people with ME/CFS and are we more susceptible to Vitamin D deficiency?
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: 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?
Diabetes
Knowing that lack of exercise and weight gain are two things that increase the risk of developing type 2 diabetes, is this type of diabetes more common in people with ME? I ask because I noticed I was getting thirsty, drinking more water than usual, and was also passing urine more frequently. I went to see my GP for some blood and urine tests and she confirmed that I had developed type 2 (non insulin requiring) diabetes. The good news is that a change in diet and weight loss are definitely bringing things under control and it doesn’t look as though I am going to need treating with drugs.
Treatment: Drugs and Weight Gain
Although taking a low dose amitriptyline has been very useful in reducing some of my pain and helping to correct my very erratic sleep pattern (frequent wakening during the night) I’ve put on a considerable amount of weight since taking this drug. My GP says that weight gain is a well recognised side-effect with this type of drug and that it can also occur with other drugs that are used for pain relief. I know from talking to other people with ME that weight gain can be a major problem with some drug treatments for ME. But why is this so? And are there any solutions?
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:
- Review the free information in the What is ME/CFS? section of the website, and the free Covid-19 and Long Covid information in the website shop.
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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).
Please note: The answers comprising Medical Matters were accurate at the time of printing. A publication date accompanies all listed entries. We will endeavour to keep Medical Matters updated as information changes, but if you would like to comment, please email: meconnect@meassociation.org.uk
MEDICAL DISCLAIMER
Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.