“Don’t ever give up trying to make other lives better.”
Those words will always drive what I do. They were written by our daughter Becki, who has had ME from the age of 12. She wrote them shortly before she died in 2014, aged 23. They were addressed to medical and health professionals and, as a registered NHS dietitian, that included me. In my role as Honorary Dietetic Advisor to the MEA, I want Becki’s legacy to live on through writing about diet and nutrition for ME/CFS and Long Covid.
Sue Luscombe, RD MBDA Hon. Dietetics Adviser
Extracts
For a number of years, I have contributed to ME Food Facts sheets for the British Dietetic Association (BDA). These were updated last year to include the nutrition recommendations from the latest NICE Guideline on ME/CFS.
The NICE recommendations now include more about nutritional risk, including unwanted weight loss, and the need for assessment by a dietitian. Many people are more vulnerable to poorer intakes, especially the more severely affected, because of symptoms of fatigue and exhaustion and the practical difficulties of eating well.
NICE also highlights that anyone with IBS-type symptoms should be tested for Coeliac disease, prior to starting a gluten-free diet ideally, or they will need to reintroduce gluten containing food in more than one meal, for six weeks prior to the blood test.
Another key point from NICE is that there is insufficient evidence to support the routine taking of specific vitamin and mineral supplements to cure, or manage,
ME/CFS. People may be at risk of side effects if they take doses above the recommended daily amount. However, be aware that those with ME/CFS may risk
Vitamin D deficiency, particularly if they are bedbound or do not go outside. It is recommended to take a daily vitamin D supplement, (10 micrograms or
400μ).
The full ME/CFS Food Facts, written by the Association of UK Dieticians (BDA.uk.com) and the ME Association’s Hon. Dietetics Adviser, Sue Luscombe, covers
advice on foods that can be helpful for those with ME/CFS:
Last April, the BDA launched its new Food Facts sheets on Long Covid and Diet. It took many months, working with leading dietitians in the Long Covid field, to produce up-to-date information, and clarify the current consensus on diet for Long Covid.
It was interesting to see how some of the language around diet is changing. The starting point for optimising nutrition, used by by the NICE Guideline on ME/CFS, is the Eatwell Guide.
Most recently, I was invited to contribute a chapter on food and nutrition for “Living with ME and Chronic Fatigue Syndrome”, published by Penguin Life Expert
last September: https://www.amazon.co.uk/Living-Chronic-Fatigue-Syndrome-Penguin/dp/0241557216
Although the book is written for ME/CFS, our son found it very helpful and readable. He has had Long Covid for the past 18 months. It gave him insight in different ways of managing symptoms he had not considered, and explained about anxiety, which is commonly experienced. As well as a chapter on nutrition the book explores the causes and management options for ME/CFS: the impact of the condition on work, education and emotional wellbeing; and advice for carers and questions to ask your doctors.
This article originally appeared in the Spring Edition of ME Essentials magazine.
You can become a member of the ME Association by signing up below