What foods will help my ME/CFS?
Your body needs a balance of healthy foods to ensure best health and aid recovery. To make sure you achieve a healthy balanced diet, eat a variety of foods from each of these groups:
- Bread, cereals, pasta, potato, and rice. Eat a portion at every meal.
- Fruit and vegetables - aim to eat five or more portions a day. Fruit makes an ideal snack.
- Meat, fish, and other alternatives: such as meat, chicken, fish, egg, nuts, Quorn, beans, pulses, soya alternatives. Include these at two meals.
- Milk and milk products, including cheese and yoghurts; and calcium-enriched milk alternatives such as soya based products.
What foods will help my energy levels?
Sugary drinks and high-sugar foods can lead to energy slumps later on, so a diet high in sugar is often best avoided. Slow- release or low glycaemic index (low GI) foods can help sustain your energy levels over a longer period of time. Low GI foods oats, wholegrain cereals, pasta, yoghurt and many fruit. Having regular frequent and smaller meals can also help.
If I feel sick, is there anything that will help?
Feeling a bit sick (nauseous) is fairly common in ME/CFS. Eating little and often, especially dry food such as ginger biscuits, toast or crackers, can help the feeling of sickness. Some people find it helps to sip at a drink often rather than drinking large amounts in one go; as does avoiding having drinks around meal times. Cold food has less smell than hot food so may be easier to manage.
My weight is changing, should I be concerned?
It is not unusual for weight changes to happen in ME/CFS, and you may find you lose some weight, especially if your appetite is not so good, you feel sick or because of the effort of eating. To prevent weight loss, or to increase your weight, you will need to eat more often, and include snacks and nutritious drinks, such as milk, or soya, or smoothies. If you have lost a lot of weight (5-10% of your body weight in 3-6 months if you are over 18 years, or not putting enough weight on if you are a child), talk to your doctor about referring you to see a diet specialist.
It is also common for people with ME/CFS to gain weight. This can be due to lower activity level, or sometimes "comfort eating" when feeling low. Try to counteract this by focusing on positive healthy food choices such as five or more portions of fruit and vegetables a day. Keep higher calorie foods that have high fat and/or sugar (such as biscuits, chocolate, cakes, crisps and sugary drinks) as a treat only.
I've heard that cutting out certain foods has helped people with ME/CFS. Do you recommend this?
There is no evidence that cutting out certain foods will make anyone with ME/CFS better, and there is a risk that if you cut something out, your diet is no longer balanced. However, some people have found that cutting out certain foods, such as wheat or milk, has helped reduce their symptoms. If you want to try and exclude a food, we suggest that you do this with your doctor or a dietican, who will help you to keep your diet healthy. For example, if you want to avoid milk, they can advise you on how to make sure you still take in enough calcium. With very restricted diets, unwanted weight loss can also Don't exclude a food from your diet for more than four weeks without professional advice.
I've been told I have irritable bowel symptoms.
What can I do to reduce them?
Stomach ache, bloating after food and wind are very common in ME/CFS. Having regular meals with healthy food choices, and changing your source of fibre are ways that may help. If these symptoms are causing you a lot of discomfort, talk to your doctor about being referred to a dietitcan for more individual advice.
I have difficulty sleeping. Any tips?
Drinks with caffeine can act as a stimulant, so avoid them iafter lunch or altogether if you find that they affect you. Caffeine is found in coffee, tea, cola and chocolate drinks and foods.
The British Dietetic Association Food Facts
The BDA's information and advice is unbiased and evidence based.
The Food Standards Agency
Government advice on healthy eating and food safety.
The IBS Network
A support group for people with symptoms of irritable bowel syndrome.
Tube feeding can be a bit of an ordeal for some patients, but it is nothing to be scared of. Severely affected ME/CFS patients are tube fed because they feel sick all the time, don't feel like eating, can't swallow, chew or such properly, sleep too much or are simply too weak. Often doctors are more worried about tube feeding than patients, because it is quite a drastic step. But if it does become necessary, think of it as a short-term practical and useful way of taking care of one of the difficulties that ME/CFS can cause. It also helps to take away the worry low weight or inability to eat can cause, giving everyone one less thing to worry about. Tube feeding is used in a wide range of paediatric medical conditions and generally most patients tolerate having a tube inserted quite well, the procedure is quick and although it can be a bit uncomfortable when it is going down, most find they soon get used to the feeling. Tube feeding is usually agreed on with the GP or Consultant, with advice from the Dietician, who will ask a nurse to do the procedure.
Types of tube
The most common type of tube is a nasogastric tube (NG tube), which goes up the nose, down the throat and into the stomach. There are special silk ones that are thinner and easier to fit, and others which can remain in place for a longer time, so they don't have to be changed so often (usually 6-8 weeks depending on the manufacturer's guidelines).
If an NG tube is unsuitable, a less common method of tube feeding is by percutaneous endoscopic gastroscopy (PEG). This is fitted in hospital under a light general anaesthetic, as a small opening needs to be made for the tube go directly into the stomach from outside. A PEG doesn't need changing nearly so often and may be more suitable if someone suffers from vomiting. Of course, there is the risk of infection to be considered, as well as the risks associated with having a general anaesthetic, and the first change of tube (usually after 12 months) must be done in hospital. PEGs are fitted in only a tiny number of ME/CFS patients who need tube feeding, usually for longer periods.
Tube feeding at home
The RCPCH guideline recommends that tube feeding is started in hospital then carried on at home under the supervision of a community paediatric nurse if needed. But it can sometimes be possible for a nurse to fit an NG feeding tube at home - this varies from team to team. Patients may become shocked or frightened when an NG tube is fitted, even at home, and it can be uncomfortable, especially if a sore throat is one of their symptoms. Patients are asked to swallow while the tube is going down the throat. Some training will be needed for the carer and should be given by the nurse fitting the tube.
There are many different sorts of feed available and the patient's dietician will advise on what is most suitable. Some dieticians may select heavy feeds to build up a person's weight quickly, although for some this may be a problem especially if they suffer from nausea. So they may need to try several different feeds before finding one that is suitable. One thing to be aware of is the speed at which the feed enters the stomach. This is normally standardised, but people with ME/CFS may need their feeds to be administered much more slowly than normal, to prevent them from being sick. If the patient hasn't been eating for some time, it may be better to start with a light feed over a slow speed of several hours to reduce feelings of nausea and bloating. Tube feeding may not get rid of the feeling of sickness completely, but it may reduce it.
It is possible to put liquid medications down the tube, or ground-up tablets that have been mixed to a paste with water, although this may make nausea worse in some cases. Patients should always check with their doctor before grinding up medication, as it is not suitable in all cases.
It is important to remember to drink lots of fluids when being tube fed, unless hydration is also being put down the tube. For people unable to drink, sucking an ice cube or lolly will keep their mouth moist and may help with feeling sick. Patients still need to clean their teeth when being fed by tube.
Reintroducing real food
There's no need to eat when being fed by tube; however it is advisable to try and continue taking small amounts of food. When the patient is ready to tolerate soft food or small meals, it is helpful to introduce them into the diet when the tube is still in place. This means they can build up eating – and confidence - gradually while cutting back on tube feeding. It's not unusual to start feeling sick again while teaching the body to take proper food again – don't worry if this happens. Nothing is irreversible and a new tube can be fitted if needed.
If a doctor is worried that a patient's weight loss is due to an eating disorder and you know that it's actually down to ME/CFS, it's important to explain the situation, and to be clear that the patient (you, or someone you are caring for) knows that they are too thin, that they want to put on some weight, and that they are happy to be tube-fed to make this happen. A patient with anorexia would be unlikely to think this way.
Community paediatric nurses can provide written tips and guidelines, be telephoned for advice, or visit patients to provide help if needed. Paediatric ward nurses may be confident enough to insert re-tubes at home if a community nurse feels uncomfortable doing so.
Is taking a vitamin and mineral supplement a good idea?
There have been a lot of claims that taking certain vitamins, minerals or food supplements will help ME/CFS symptoms (for example, it has been suggested that in ME/CFS the body is lacking certain nutrients), but so far, there is no scientific evidence to support any of these claims.
If you are worried that your diet is not as healthy as it should be, it may be worth taking an all-in-one multivitamin and mineral supplement as long as it contains no more that 100% of your daily recommended intake. Be careful not to take large doses of supplements, especially Vitamin A and B6, as this can be harmful. Taking several different supplements increases the chance of accidentally having too much of any one nutrient, so best just to take one. Always check with your doctor before taking supplements, as they can have an adverse effect if taken incorrectly or combined with other medication.
If you spend most of your time indoors, you will probably be low in Vitamin D. You get most of your Vitamin D from sunshine, and it is needed to make strong bones and teeth, making it especially important during the growth spurt in teenagers. We recommend that anyone with a low Vitamin D intake should take a Vitamin D supplement of 100% of daily recommended amount. This applies particularly to severly affected people, who can ask for a blood test from their doctor to check Vitamin D levels.