What is ME/CFS?
ME/CFS can affect people in different ways, and symptoms can vary in severity and fluctuate over time. The main symptoms include:
- debilitating fatigue that is worsened by activity and is not significantly relieved by rest
- post-exertional malaise (PEM), where symptoms worsen after physical, mental, emotional or social activity
- unrefreshing sleep or other sleep problems
- difficulties with thinking, memory and concentration, sometimes known as 'brain fog'.
People with ME/CFS may also experience other symptoms, including pain, headaches, dizziness, nausea and sensitivity to light, sound, touch, taste or smell.
There is no single test for ME/CFS, and other possible causes of symptoms need to be ruled out. If you think you may have ME/CFS, speak to your GP.
ME/CFS can significantly affect everyday life. Some people may also experience difficulties with eating, such as nausea, changes in appetite or having limited energy to shop for and prepare food. Nutrition support can help you find practical ways to maintain a balanced diet and meet your nutritional needs.
In this video, autoimmune disease expert VJ Hamilton (BSc, DipION, mBANT) explains how working with a nutrition professional can help manage symptoms of ME/CFS.
ME/CFS treatment and management
There is currently no cure for ME/CFS, but different approaches can help people manage their symptoms and the impact the condition has on daily life. Support should be tailored to the individual and their symptoms.
Cognitive behavioural therapy (CBT) may be offered to people with ME/CFS who would like support with managing the impact of their symptoms and living with a long-term condition. It may help with areas such as coping with symptoms, managing difficulties associated with ME/CFS and supporting emotional wellbeing.
It's important to know that CBT isn't a cure for ME/CFS or a treatment for its underlying cause. However, some people may find it helpful in coping with the challenges of living with ME/CFS. It's a personal choice and may be one part of the wider support that's right for you.
Energy management may also form part of ME/CFS care. This involves finding a sustainable level of activity that takes account of a person's individual energy limits and aims to reduce the risk of worsening symptoms.
Lifestyle changes may also form part of managing ME/CFS. This can include support around diet, sleep and relaxation, depending on your symptoms and individual needs.
Common dietary issues with ME/CFS
People with ME/CFS may experience changes in their weight or appetite. Symptoms such as nausea, pain and fatigue can also make shopping for food, preparing meals and eating more difficult.
If ME/CFS is affecting what or how much you're able to eat, nutrition support can help you find practical ways to maintain a balanced diet and meet your nutritional needs. If you're losing or gaining weight or are at risk of malnutrition, you may be referred to a dietitian with a special interest in ME/CFS.
Some people with ME/CFS may also experience digestive symptoms, such as bloating, abdominal pain, diarrhoea or constipation. If you're experiencing ongoing digestive symptoms, speak to your GP or another appropriate healthcare professional before making significant changes to your diet.
Chronic fatigue syndrome diet
Eating a balanced diet and drinking enough fluids are important for overall health. If symptoms such as nausea, changes in appetite or fatigue make eating more difficult, eating smaller amounts more often may help. A nutrition professional can work with you to find practical ways to meet your nutritional needs.
If you're losing or gaining weight, at risk of malnutrition or need to follow a restrictive diet, you may need more specialist support. NICE recommends referral to a dietitian with a special interest in ME/CFS in these circumstances.
What to eat with ME/CFS
There isn't a specific diet that's recommended for ME/CFS. Instead, the focus should be on eating a varied, balanced diet that provides the energy and nutrients your body needs. This can include starchy foods such as potatoes, rice, bread, pasta and other grains, choosing higher-fibre or wholegrain options where possible.
A balanced diet includes plenty of fruit and vegetables (aim to get at least five portions a day), dairy products such as cheese and yoghurt, as well as meat, fish, eggs, nuts, beans and pulses.
Restrictive diets and ME/CFS
There's currently no evidence to recommend restrictive diets as a treatment for ME/CFS. The NHS does not recommend diets that exclude certain food types for people with ME/CFS. If you need to avoid foods because of a diagnosed allergy or intolerance, or you're considering restricting your diet, speak to a dietitian or appropriate healthcare professional to make sure you're still getting the nutrients you need.
Some people with ME/CFS also experience IBS symptoms. If you're experiencing ongoing digestive symptoms, speak to your GP or another appropriate healthcare professional before making significant changes to your diet.
Food intolerances and ME/CFS
If you think certain foods are causing symptoms, it's important not to assume that ME/CFS is the cause or that you have a food intolerance. Speak to your GP or another appropriate healthcare professional, who can help you explore what may be causing your symptoms.
If a food intolerance is suspected, you may be referred to a dietitian for further assessment. They may ask about your symptoms and medical history and suggest keeping a food and symptom diary to help identify possible triggers.
In some cases, you may be advised to avoid a suspected food for a limited time before gradually reintroducing it. This should be done with appropriate professional support to reduce the risk of unnecessarily restricting your diet or missing out on important nutrients.
How can nutrition support people with ME/CFS?
ME/CFS symptoms can make shopping, preparing food and eating well more difficult. A nutrition professional can work with you to understand the challenges you're experiencing and find practical ways to meet your nutritional needs.
Support might include exploring ways to make meals easier to manage, maintaining a balanced diet when your appetite is affected or helping you plan around symptoms such as nausea and fatigue. The support you receive should be tailored to your individual needs.
Finding a nutrition professional for ME/CFS
If you're looking for nutrition support for ME/CFS, consider finding a professional who has experience working with the condition and understands how symptoms such as fatigue, post-exertional malaise, nausea and difficulties shopping for or preparing food can affect what and how you eat.
A nutrition professional can work with you to understand your individual needs and find practical ways to maintain a balanced diet. When viewing profiles, look at their experience with ME/CFS, qualifications and approach to nutrition, and consider asking how they would support your particular needs before deciding if they're right for you.
On Nutritionist Resource, you can search for professionals who support people with ME/CFS and learn more about their experience and approach through their profiles. Everyone listed has provided proof of qualifications and insurance or membership with a professional body.
