Managing your symptoms

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Diet and nutrition

Diet and nutrition

Eating balanced and healthy meals is important during your illness, to provide you with the energy and nourishment you need for better health. Maintaining a good intake of fluids is important too, as well as reducing your consumption of stimulants such as caffeine and depressants like alcohol.

The effort required to buy food and prepare nutritious meals can mean that some people with M.E. find it difficult to maintain a healthy diet. This can be made harder by loss of appetite or food intolerance (see below), which may mean that you consider taking vitamin/mineral supplements.

If you are experiencing significant problems with your diet and struggling to maintain an adequate food intake, discuss the possibility of a referral to a dietician with your GP or specialist. Dietitians are qualified and regulated health professionals that assess, diagnose and treat dietary and nutritional problems.

Other people find smaller, more frequent meals easier to digest and maintain energy levels. Severe M.E. a guide to living, available from our shop, has a useful chapter on managing diet and nutrition.

Some adults especially those living alone find it helpful to have pre-prepared meals delivered or to get friends and family to donate frozen portions of their meals. This applies equally to those mildly affected who work and need to save energy as those severely affected who aren’t able to shop, prepare and cook healthy meals.

Vitamins and supplements

The October 2021 NICE guideline for M.E./CFS advises health professionals as follows (sections 1.12.23 and 1.12.24):

"Be aware that people with ME/CFS may be at risk of vitamin D deficiency, especially those who are housebound or bedbound. For advice on vitamin D supplementation, see the NICE guideline on vitamin D. Explain to people with ME/CFS that there is not enough evidence to support routinely taking vitamin and mineral supplements as a cure for ME/CFS or for managing symptoms. If they choose to take a vitamin or supplement, explain the potential side effects of taking doses of vitamins and minerals above the recommended daily amount."

The British Dietetic Association (BDA) recommends seeking an appointment with “a dietitian within the NHS after being referred by your GP or multi-disciplinary team. Your GP may make this referral or you may request a referral yourself.” It may also be possible to see a knowledgeable Practice Nurse.

The BDA also offers a food fact sheet specifically for people with M.E.

With regards to supplements, the BDA says:

“There are many claims that nutritional supplements help CFS, including multi vitamins, B vitamins, magnesium, essential fatty acids (omega-3s), carnitine, and co-enzyme Q10. Any benefit of supplements in CFS is unproven and there is need for further research in this area. Some are very expensive and contain huge doses of the active ingredient. Large doses, for instance of Vitamin A and B6, can be harmful. If you are concerned about your nutritional intake, a multivitamin and mineral supplement, that provides no more than 100% of the recommended daily amount, (RDA - see the ingredients label), may be recommended. If you are housebound, or don’t go outside much, your doctor should check your vitamin D levels, as you are at risk of low Vitamin D status. A Vitamin D supplement of 10 Micrograms daily is recommended all year round for those at risk.”

Our 2014 M.E. time to deliver survey of more than 2,000 people with M.E. found that:

  • 62% of respondents used a vitamin/mineral supplement. Of these, 66% said it was helpful or very helpful; 33% said it made no difference, and 1% said it made them a bit or much worse
  • 51% had made dietary changes to help them manage their symptoms. Of these, 72% said it was helpful or very helpful; 27% said it made no difference, and 1% said it made them a bit or much worse.

Cutting out certain foods

Some people with M.E. find symptomatic relief from cutting out dairy, gluten or other food groups. If you are considering restricting your diet to help with M.E., please seek the support of an appropriate healthcare professional. The BDA has useful guidance on what constitutes bad dietary advice.

Writing in our membership magazine, InterAction, nutritionist, health journalist and author Dr Carina Norris RNutr (Public Health), who has lived with M.E. for more than 20 years, offers the following information:

“Diets proposed as being potentially helpful for M.E. include the autoimmune protocol, the Myers way, the GAPS (Gut and Psychology Syndrome) diet and the histamine intolerance diet. These are also targeted at people with autoimmune diseases, such as rheumatoid arthritis, certain thyroid problems, coeliac disease, lupus and Addison’s disease.

“The theory behind these diets is that damage to the guts has made it leaky, allowing food molecules (which should not pass through) reach the bloodstream, where they are picked up by the immune system, causing inflammation. And with the inflammation – so the theory goes – comes a whole host of symptoms which people with M.E. recognise: extreme fatigue, muscle aching and weakness, depression, brain fog, digestive problems, and an array of allergies and intolerances.

“Diets like these share common threads: all are based on cutting out ‘problem’ foods. Many ban dairy and gluten. Other grains are generally excluded too, and sometimes nuts and seeds. The nightshade family of vegetables (tomatoes, peppers, potatoes, aubergines and chillies) and nightshade spices (eg. cayenne) may also be banned. Added sugar is almost certainly off the menu, and some diets remove or limit fruit, thanks to the fructose (fruit sugar) it contains. Most of the diets ban processed foods. This is because many of them contain dairy and grains; artificial additives, colourings, flavourings; artificial sweeteners; and pesticide and plasticiser residues.

“This means that walking around the supermarket with a list of ‘permitted’ foods can be disheartening indeed – almost all the food on these diets must be prepared from scratch, from single ingredients. For most of the diets, you first have to heal your gut by following an extremely restrictive diet. After this, it’s generally possible to gradually reintroduce foods, one by one, to see whether any can now be tolerated. The intention is that in this way, people can return to a more varied and ‘normal’ diet.

“Many of the individual parts of the story – bad responses to food, inflammation etc. – are backed up by good science, published in peer-reviewed journals. But in order to prove their effectiveness for M.E., we’d need a large scale clinical trial. Even if the resources were available, it’s unlikely that studies would provide conclusive results because M.E. is such a variable disease.

“A big stumbling block for these diets is asking people to give up foods recommended as ‘healthy’ – such as wholegrains (an important source of energy for most people); eggs, dairy products, beans and other pulses (good for protein, and dairy is a source of calcium); and some fruits and vegetables (packed with vitamins, minerals and antioxidants).

“Mainstream medical and nutritional opinion goes that only people with clinically diagnosed allergies, or conditions like coeliac disease (where gluten must be avoided), need to give up foods. Anything else is treated as a ‘fad.’ But opinion is softening – it’s becoming apparent that many people do indeed have intolerances to foods, which can only be pinned down by painstakingly completing food and symptoms diaries. Many people have found that cutting out a particular food or group – say dairy, wheat or eggs – relieves their symptoms, especially those relating to IBS.”