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?
Thank you for raising a very important question. The whole issue of nutritional assessment in people with ME/CFS, along with the risk of malnutrition in those with more severe ME/CFS, is something that I raised during the preparation of the new NICE guideline on ME/CFS. As this is such an important and neglected topic, I have prepared a fairly detailed reply.
Firstly, it’s worth noting that malnutrition is surprisingly common amongst people with chronic long-term medical conditions. And having any form of malnutrition has an important adverse effect on health. This includes decreased immune system function, decreased muscle strength, delayed wound healing, and an increased risk of falls. It will also cause a further reduction in energy levels and exacerbate cognitive problems – both of which are very relevant in ME/CFS.
So, a proper nutritional assessment – which includes both food and fluid intake – should form part of the medical assessment and ongoing care of everyone, especially those with moderate or severe ME/CFS. And it must involve a dietitian, preferably one who has experience of seeing people with ME/ CFS. The assessment should take account of all the factors that increase the risk of malnutrition in vulnerable groups of people with long-term medical conditions. Physical factors include the presence of nausea and/or loss of appetite, swallowing difficulties, and bowel symptoms that may affect both digestion and absorption of food. Psychological factors can include depression – if this occurs – and its effect on appetite. Social factors involve the ability to obtain food and prepare meals.
The assessment should record the person’s normal daily intake of food and fluid in terms of total calories, carbohydrates, proteins, fats, sugars, vitamins and minerals, and micronutrients. For example, although fruit and vegetables are very healthy they contain very few calories. And, while dairy has become a ‘bad food’ in the eyes of some, it is an important source of calories, protein, and calcium. Fluid intake should be in the region of five or more cups per day of water, juice, coffee, tea etc. Physical signs of possible malnutrition should also be noted.
These include loss of hair, changes in facial features:
- including prominent cheekbones and sunken eyes, a red swollen tongue
- which may add to swallowing problems, loss of skin elasticity when pinched, brittle nails and muscle wasting.
Finally, the assessment should include the use of what is called a validated screening tool such as the five-step Malnutrition Universal Screening Tool (MUST) and/or the Mini Nutritional Assessment (MNA). These tools are designed to record and monitor a person’s BMI (body mass index – the ratio of height to weight which identifies people who are overweight, normal weight or underweight) along with any recent weight loss. The scoring system identifies people who are at high, medium or low risk of malnutrition. And, it’s worth noting that people who are overweight or obese can also become malnourished if they are not having a healthy diet. A blood test to check for Vitamin D status is also important in anyone who is housebound and whose skin is not being exposed to sunlight, which is how most Vitamin D is produced in the body. If a person has evidence of malnutrition or is identified as being at risk of developing malnutrition, a nutritional care programme should be organised and supervised by a dietitian.
This will include specific dietary advice regarding calorie intake, all the different food groups, along with vitamins, minerals and micronutrients. It could also involve the use of oral nutritional supplements – which can be prescribed on the NHS if necessary. These come in the form of powders and flavoured drinks and can be used to increase the intake of specific food groups and calories, or to help with food intake where there are swallowing difficulties in people with severe ME/ CFS.
- Diet and Nutrition: The Ketogenic Diet
- Diet and Nutrition: Restrictive Diets
- The 2021 NICE Clinical Guideline includes a chapter, ‘Dietary Management and Strategies‘, and it recognises the risk of malnutrition and of getting expert advice particulary if the person is severely or very severely affected by ME/CFS. The ME Association has produced a free summary of the Guideline and recommend you familiarise yourself with the contents and then discuss the recommendations that are most relevant with your GP, ME/CFS Specialist Service, or Social Care provider (as appropriate).
- The ME Association has additional information available to download from the website shop:
- A significant proportion of people with ME/CFS report that they also have stomach and bowel symptoms very similar to those found in irritable bowel syndrome (IBS). We examine the symptoms, explain how they should to be investigated, and discuss available treatments.
- Diet and Nutrition – including dietary trends and malnutrition, and Cook Books with recipes for all tastes and abilities.
- Vitamins and Supplements – including Vitamin B12 and Vitamin D deficiency and Muscle Energy Supplements.
- Swallowing Problems
- Nutritional Assessment
- Nutritional Support
- Brittle Nails
- Muscle Wasting
- Malnutrition Universal Screening Tool
- Mini Nutritional Assessment
- Body Mass Index
- NICE Guideline
- Irritable Bowel Syndrome
- Inflammatory Bowel Disease
- Immune System
- Severe ME/CFS
- Muscle Weakness
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.