Chronic fatigue syndrome (CFS) is also called ME, which stands for myalgic encephalomyelitis, (or encephalopathy). CFS/ME affects both adults and children, and can be serious, causing long-term illness and disability.
What are the symptoms?
Symptoms include some, or all, of the following:
- constant, overwhelming mental and physical tiredness (exhaustion)
- sleep disturbance, un-refreshing sleep
- post-exertion malaise (feeling worse after exercise)
- muscle pain and/or weakness or joint pain
- headaches, poor concentration or poor memory recurring sore throats or ‘flu-like’ symptoms
- feeling sick, (nausea)
- symptoms of IBS (Irritable Bowel Syndrome), such as wind/bloating, stomach pain, diarrhoea and constipation
- intolerance, or sensitivity, to alcohol, caffeine, some foods or medications
CFS/ME is poorly understood, with no specific diagnostic test. Diagnosis is made by excluding other causes of the symptoms.
Can what I eat help CFS/ME?
Eating a variety of healthy foods is very important for your health and wellbeing. Although diet alone isn’t the cause, or cure, of CFS/ME, a poorly balanced diet can compromise your health. Use the Eatwell guide to ensure your diet contains the best balance of foods from each group.
- Potatoes, bread, rice, pasta and other cereals, especially wholegrain provide fibre and energy. Try to include low GI (Glycaemic Index) foods, such as oats and wholegrains, which slowly release energy, helping to keep your energy levels stable. Eat a portion at every meal. If you are less active, because of your ME/CFS symptoms, you will use fewer calories, so choose healthier types over those high in added sugars and fats.
- Fruit and vegetables. Aim to eat more - five or more portions a day.
- Beans, pulses, fish, meat, and eggs. These provide protein. Eat two portions a day. Eat more pulses and beans, and fish, and less processed meat, such as ham, sausages and burgers. Nuts also provide a nutritious snack, or addition to a salad or cereal.
- Dairy and alternatives. An important source of calcium for good bone health. This includes milk, cheese, yoghurts and calcium-enriched milk alternatives, such as soya based products. Note: not all milk alternatives, particularly organic ones, are calcium-enriched.
- Fluid. It is important to have a good fluid intake, 6-8 mugs / glasses per day is a good goal. Having too little fluid can lead to headaches, constipation and reduced alertness. Any type of fluid such as squash, juice, water, tea and coffee all count towards this.
Eating a little and often may help your symptoms. For example, have three smaller meals daily, with the addition of three snacks in between.
Unwanted weight changes?
People with CFS/ME may put on weight because they are less physically active. They may also eat more, because of low mood, boredom, comfort eating, or wanting to boost energy levels. Some report feeling more hungry than usual, (polyphagia). To combat weight gain keep higher calorie, fat and sugar foods, such as biscuits, chocolate, cake, crisps and sugary drinks to a minimum. Instead try vegetables and fruit or other healthy snacks.
Weight loss can occur because you are eating less. This may be because of a poor appetite, feeling sick, having altered taste and smell, or if exhaustion makes it difficult to buy, prepare or chew food. It will help to eat regularly, having small, softer texture, meals, quick and easy to prepare, and nourishing snacks and drinks.
If you are feeling sick, try snacking on dry, starchy foods, (such as toast/plain biscuits), eat little and often, and sip drinks throughout the day. Having something at breakfast may help.
IBS-type symptoms, such as wind/bloating, abdominal pain, diarrhoea and constipation are common in CFS/ME. For managing IBS-type symptoms refer to the BDA Food facts on IBS.
If you need further help, ask your doctor to refer you to a dietitian. They may suggest you trial a complex and challenging diet, which reduces short-chain fermentable carbohydrates, (also known as a low FODMAP diet). It is strongly recommended that this is done with the support of a dietitian.
What about gut bacteria (microbiome) and CFS?
There is a lot of research into the role of the gut microbiome and the gut lining, or membrane “leaky gut” in CFS. So far, the results are inconclusive, and it is too early to recommend a specific diet such as gluten-free. There is evidence that some probiotics can be useful for IBS.
Myths about CFS/ME and food
There is a lot of conflicting advice and information on the internet. Many people with CFS do report an improvement in symptoms after changing what they eat. Yet there is no scientific evidence to support the claims that such as the Anti-Candida (low sugar/yeast) diet, or other restrictive diets, like the Paleo/Stone-Age or Blood Type diets, or eating chocolate help CFS.
These are not recommended and can create much more work and effort for sufferers and their carers. Although it is often thought to be better to avoid certain food types it can limit your choices, cost more and be less healthy. Many gluten-free foods, for example, are higher in fat and sugar. Many non-dairy milks are also lower in protein.
Food allergies and intolerances
CFS may affect or be affected by the immune system, but exactly how is unknown. However, CFS food related problems are more likely to be food intolerances, (not involving the immune system), than food allergies (immune system reaction). A detailed history by an experienced healthcare professional is required to diagnose and manage these. There are many commercially available tests claiming to diagnose food intolerance and allergy. These should be avoided as they have no scientific basis.
Are supplements helpful?
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 ten micrograms daily is recommended all year round for those at risk.
CFS is a medically unexplained illness, with many unproven claims of diet and supplement treatments. If making changes yourself to your diet, care needs to be taken that your diet remains healthy, nutritionally adequate, and that there is no unwanted weight loss/gain. If you need further help with your diet ask your doctor to refer to a registered dietitian.