Question

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?

Answer

I take the view that people with ME/CFS already have far too many restrictions being placed on all kinds of things that they used to enjoy. So, in the absence of any scientific evidence to show that any type of restrictive diet is of any benefit in ME/CFS, this is not an approach to management that I would recommend.

We make it very clear in ME Association literature about diet and nutrition that there are several things people can do, for example, checking vitamin D status with a blood test – especially if someone has moderate or severe ME/CFS and does not get much exposure to natural daylight. Try an exclusion diet if you have irritable bowel type symptoms – eat slow-release carbohydrates to normalise blood sugar levels; cut down on quick fix carbohydrates to avoid insulin peaks; drink plenty of fluids/water; avoid alcohol; cut out junk foods and eat plenty of fruit and veg.

Could I also point out that people with ME/CFS should not go on a gluten-free diet (i.e., removing wheat, oats and barley products) until the possibility of coeliac disease has been excluded. This is a potentially serious condition that can cause fatigue and irritable bowel-type symptoms. And screening for coeliac disease, with a simple blood test, should form part of the list of routine investigations that are always checked before a diagnosis of ME/CFS has been confirmed.

There is a danger that restrictive diets (which are not properly balanced when it comes to all the various food groups that should be present and in roughly the right proportions) will cause nutritional deficiencies and dysfunction and in some cases, they can cause serious harm, including malnutrition. Sue Luscombe, the ME Association's Hon. Dietetics Adviser, comments:

“I would add that if there has been 10% unwanted weight loss in the last 3-6 months this is recognised as high risk of inadequate nutrition, requiring referral, assessment and nutritional support – which may involve using a liquid formula and supplements. In my experience, disordered eating and restrictive food choice is not uncommon, especially in those with ME/CFS who are severely affected. It is essential that a good variety of food intake is encouraged to get all the adequate nutrition needed. For those who are severely affected, self-restrictive and limited food intake is a very serious concern.”

See also:

• Diet and Nutrition: Malnutrition
• Diet and Nutrition: The Ketogenic Diet

More information

• 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.