The ME Association: Diet and Nutrition in ME/CFS and Long Covid

Eating Well for ME/CFS and Long Covid

Introduction

ME/CFS and Long Covid can have an impact on eating, drinking and nutrition. This booklet aims to provide clear guidance based on current evidence.

• We’ll consider how diet changes may help symptoms, such as feeling sick, (nausea), some types of gut symptoms, unwanted weight changes, energy fluctuations, caffeine or alcohol intolerance, and orthostatic intolerance.
• We’ll offer helpful tips to prepare and cook food, including from the online ME/CFS community.
• We’ll explore pitfalls, claims and trends with diet information…

Contents

Extract:

Malnutrition

If you have a moderate or severe form of ME/CFS or Long Covid, you are likely to experience difficulty obtaining, preparing, and eating a healthy and balanced diet and you may be underweight as a result.

Not being able to eat enough because you are so unwell or cutting out, or reducing, specific food groups such as dairy and wheat because you have an allergy or intolerance or are trying to follow a restrictive diet, might also mean that you are malnourished or at risk of malnutrition.

The issues of nutritional assessment in people with ME/CFS, along with the risk of malnutrition in those more severely affected, was raised when preparing the 2021 NICE Guideline on ME/CFS.

Malnutrition is surprisingly common among people with long-term medical conditions:

• It significantly affects health; can repress immune responses and enhance viral vulnerability, reduce muscle strength, delay wound healing and increase the risk of falls.
• It reduces available energy and exacerbates cognitive problems – both of which are particularly relevant to ME/CFS and Long Covid…

Extract:

Life-Threatening malnutrition in Very Severe ME/CFS

As a result of eating and/or swallowing difficulties, gastrointestinal problems tolerating food, and a person with very severe ME/CFS being too debilitated to eat or drink, some people will require nutritional support in the form of tube feeding – either in hospital or at home.

Eating and swallowing difficulties in people with severe and very severe ME/CFS should be not be misdiagnosed and treated as a psychogenic eating disorder. This can easily result in a significant delay in initiating appropriate management and life-threatening malnourishment and/or dehydration.

• The possibility that nutritional and hydration support may be required is acknowledged in the section covering the management of severe ME/CFS (1:17) of the 2021 NICE guideline on ME/CFS.

• For more information see the paper from Helen Baxter, Nigel Speight (MEA Paediatric adviser) and William Weir: Life-threatening malnutrition in very severe ME/CFS.

Diet and Nutrition was written by Sue Luscombe, Honorary Diet and Nutrition Adviser to the ME Association

“The ME Association is very grateful to Sue Luscombe for helping to produce this new booklet. Sue is a Registered Dietitian with a wealth of experience improving people’s health and treating illness through diet changes. Her NHS career spanned over 40 years. She has been especially interested in ME/CFS after her daughter, Becki, was diagnosed with the illness in 2002, at age 12. For many years, the family lived with the debilitating fatigue and practical consequences of ME/CFS.”

DISCLAIMER: Medical information contained in literature from the ME Association is not intended to be a substitute for medical advice or for treatment from your doctor or other healthcare professional. We recommend that you always consult a medical professional about any specific problem and the information we provide is discussed with them before you take any further action.