Chronic Fatigue Syndrome/ME

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Myalgic encephalomyelitis/encephalopathy (ME), Post Viral Fatigue Syndrome (PVFS) and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) are all terms that are used to describe a condition which is most commonly known as Chronic Fatigue Syndrome.

Which term should I use?

Though there are many different terms used to refer to the condition, the ones used most frequently are ME and CFS, which more often than not are used along side one another giving the impression they are the same condition, despite the two actually being quite different.

CFS is considered to be the least serious of the two conditions and is typically diagnosed when healthcare professionals are unable to identify a detectable trigger. CFS diagnosis is usually based entirely on a persons symptom’s, with a focus placed upon ‘fatigue’.

ME on the other hand, is a condition which normally has an identifiable trigger, accompanied by a set of neurological symptom’s and signs, such as a viral illness. The condition is what is known as a multi-system disease, which effects the cardiovascular, endocrine (hormonal), immune, musculoskeletal, and neurological systems.

The birth of the combined term, ME/CFS came about in the 1990’s when there was not yet any specific diagnostic criteria for ME. At this stage post-exercise fatigue was believed to be one of the conditions most recognisable symptoms, and thus ME sufferers began to be diagnosed with CFS.

In subsequent years, the World Health Organisation’s International Classification of Disease, classified ME as a disorder of the nervous system, and experts expressed doubts over whether the diagnosis of CFS was too broad and covered too many patient groups.

Developments such as these have prompted ME and CFS experts, charities and sufferers to highlight the difference between the two conditions, though even now the considerable overlap between the treatment approaches and symptoms of both means that they are still commonly referred to using the term ME/CFS. Please note, we will be continuing to use the terminology ME/CFS throughout this fact-sheet.

What is ME/CFS?

The World Health Organisation, the Department of Health, and the Department for Work and Pensions have all officially recognised ME/CFS as a neurological disorder.

Though each sufferer will experience his or her own unique set of symptoms, the condition is often characterised by post-exertional malaise, induced muscle fatigue and cognitive dysfunction.

To add further confusion to the debate surrounding ME/CFS and whether the conditions are the same, there is also much misinterpretation about the terminology itself, which is used to describe a variety of dissimilar conditions around the world.

Because there is currently no internationally agreed definition of ME/CFS, this term along with chronic fatigue, chronic fatigue immune dysfunction, post viral syndrome, myalgic encephalomyelitis, myalgic encephalitis and myalgic encephalopathy are all used interchangeably.

For example, ‘chronic fatigue syndrome’ as used in the term ME/CFS, and ‘chronic fatigue’ are commonly used as though they refer to the same condition. However, the conditions are not the same and their treatment should be approached differently. When used correctly, the term ‘chronic fatigue’ describes an individual who has in exhaustion or a lack of energy for in excess of 6 months, and in many cases this is a side effect of an additional illness such as depression or an autoimmune disorder.

Contrastingly, the term ‘chronic fatigue syndrome’ (as used in ME/CFS) when used in what is deemed to be the correct context, describes a disabling fatigue which has persisted for in excess of six months, and is very different to that of normal tiredness.

Any form of activity has a huge effect on ME/CFS sufferers and usually results in physical, cognitive and emotional exhaustion which is delayed by hours and sometimes days.

ME/CFS can affect individuals of any age and any sex, and whilst some sufferers may be able to continue living their normal lives without too much disruption, for others the condition will be so debilitating that they may have to give up education, work, social activities, and in very serious cases may even become house-bound or bed-bound.

Diagnosis and Testing

Most chronic illnesses are diagnosed with the help of a standard set of diagnostic criteria/guidelines, which are there to assist medical professionals when assessing a condition. However, currently no universal guidelines have been established for the effective diagnosis of ME/CFS, making way for numerous criteria all of which differ in their understanding of the illness.

The most well known diagnostic criteria are as follows:

• Canadian Criteria
• National Institute for Health and Clinical Excellence (NICE) Guidelines
• Oxford Criteria
• The Fukuda Criteria
• The London Criteria
• Royal College of General Practitioners (RCGP) Guidelines.

Each of the above all have their own take on what triggers, worsens and improves symptoms, with some citing ‘physical’ reasons and others putting it down to ‘behavioural’ and psychiatric’ reasons.

The varying diagnostic criteria and differences in treatment approaches have resulted in many ME and CFS organisations calling for a proper model for treatment, but for now research into the causes of the condition and the most effective treatment and management options will continue.

Although diagnostic criteria varies greatly across the board, usually those who do believe they may be suffering from the condition will undergo a series of tests so that any other possible conditions can be ruled out. Many symptoms of ME/CFS are also present in other conditions, so these tests will ensure diagnosis is as accurate as possible.

Treatment and Management

There is no known cure for ME/CFS, so treatment efforts are aimed towards the management of symptoms and helping the sufferer to lead as normal a life as possible.

Listed below are treatment options which are used by some sufferers to help reduce and manage their symptoms:

Complementary Therapy

Some alternative and complementary therapies such as acupuncture, homeopathy and relaxation therapy have been found to relieve some symptoms of ME/CFS

Counselling for patients and carers

Chronic illnesses such as ME/CFS can have a profound effect on a person’s mental health as well as on their physical health. Individuals who are affected significantly by the condition and have found themselves having to give up their jobs, independence, financial security and social life may find that they feel lonely, isolated and depressed, and sometimes a sense of guilt for those who have to care for them.

Similarly, a carer of an ME/CFS sufferer may also need to make sacrifices in their life, which again may lead to feelings of isolation and depression and sometimes resentment towards the individual they are caring for.

Both parties will need to undergoa series of adjustments in order to cope with these changes, and counselling is a support tool which may help individuals to do this.  

Cognitive Behavioural Therapy (CBT)

Cognitive Behavioural Therapy is a form of counselling which is based on the premise that the way we think can influence the way we behave.

ME/CFS sufferers often see this method of treatment as controversial, as some CBT treatment is aimed at convincing sufferers that their condition is only in the mind, when actually it is a neurological condition.

However, despite this, CBT has helped to improve ME/CFS symptoms for some individuals by changing the way they feel about their situation, addressing negative thought patterns and helping them to accept the diagnosis.

Graded Exercise Therapy (GET)

This is a structured programme which is designed to gradually increase the intensity and frequency of an individuals exercise.  Levels will really be dependent on the severity of each person’s symptoms and should always be supervised by a medical professional as in some cases GET has actually been found to have detrimental effects.

Medication

ME/CFS brings about a series of side effects, ranging from headaches through to muscle pain. Sufferers who do experience these kinds of side effects will often be prescribed traditional painkillers, though it is recommended they do not keep this up long term. Some medication may also be prescribed to help manage any mental health concerns which have arisen as a result of the illness, as well as any sleep disturbances that patients experience at night.

Pacing

Though pacing is not really a form of therapy or treatment, it is an effective way of helping ME/CFS sufferers to simply and effectively manage their energy.  

The idea of pacing is that individuals plan out their day ahead so that periods of activity and rest are balanced, energy is preserved, and over exertion is avoided.

Pacing is a management strategy which is favoured by many sufferers because it helps them to avoid what is known as the ‘boom bust’ cycle, in which they do too much on a good day but then suffer the next day when the physical activity from the day before finally sets in.

Individuals should start by establishing a level of activity which they feel they could sustain without worsening their condition and they should keep this in mind when performing any tasks. It is important that individuals take into account the amount and type of energy an activity might take, as it is not just physical tasks which have an effect but also cognitive tasks or those involving emotional energy. For example, hoovering may require a great deal of physical energy and having a phone conversation may require more cognitive and emotional energy.

Sufferers should remember that even if they feel as though they are not tired and could do more, they must still take regular rest periods.

The overall idea of pacing is to establish a routine which individuals are able to maintain on a long-term basis without worsening their symptoms.

Pacing should ideally be used as part of an integrated programme of care, which may include medical treatment, emotional support and counselling.

Support Groups

Support groups set up for individuals with ME/CFS are a good place for sufferers to go and talk to others who have found themselves in a similar situation. They are also a good place for sharing problems with others who are understanding of the condition and its limitations, and they also provide a setting for exchanging ideas on ways to cope with the illness as well as practical issues such as financial help for those unable to work.

Nutrition for CFS

Although it may not seem like ME/CFS has anything to do with diet and nutrition, actually there are many considerations that need to be taken into account. What we put into our bodies has a profound effect on how they function, so we may find that a good diet helps minimise ME/CFS symptoms.

Food Intolerances

Although there is no scientific evidence to support the following theory, some experts are of the belief that ME/CFS is linked to the immune system, and this could explain why some sufferers believe certain foods worsen their symptoms.

The best way to identify whether you are intolerant to a specific food or not, is to follow a food elimination or exclusion diet. The former involves removing suspected foods from your diet to see if symptoms improve, and the latter involves reverting to a very basic diet for a period of time before gradually reintroducing additional foods one at a time so the culprit can be identified.

Elimination and exclusion diets could mean you are removing essential nutrients from your diet so should not be done without supervision from a medical professional.

Another good place to start when trying to identify food sensitivities is to keep a food diary of what you eat and when you experience the worsening of symptoms, this could help you to spot any patterns.

Food Accessibility and Preparation

Individuals who are affected by ME/CFS may find that their condition makes it very difficult for them to either leave the house regularly to buy food, or indeed to stand in the kitchen and cook it without the process having a reverberating effect the next day.

When combined, these factors can make maintaining a healthy diet challenging for ME/CFS sufferers, though there are certain steps sufferers can take to minimise the stress and energy it takes to eat healthily:

• Ensure the cupboards are stocked with plenty of tinned, dried and long life foods in the event that you run out of fresh produce and are unable to get to the shops. Tinned soups, fish, vegetables and pulses, packetsauces and jars, rice, pasta, cereals, oatcakes etc. are all useful store cupboard foods which can make mealtime preparation easier and are also good for snacks.

• Utilise your freezer space and cook big meals, split them up into individual portions and then freeze them. Cooking a huge meal can be exhausting for anyone with ME/CFS so in order to avoid overexertion spread preparation such as chopping vegetable’s over a couple of days and ensure that regular periods of rest are taken throughout the cooking process. You can now freeze a huge array of foods, from fresh soups through to quiches, meat and fish and it’s also a great way of preserving the nutrients within foods. 

• ME/CFS can bring about appetite changes, or could result in individuals having little motivation to cook because the act of cooking worsens symptoms. Even if you don’t feel hungry it is still important to ensure your body has the energy and nutrients it needs, so if you are not managing to eat three meals a day then try to eat smaller meals and healthy snacks more frequently.

Weight Changes

ME/CFS sufferers may experience some changes to their weight. Often, sufferers find that although their appetite remains the same, the fact that they become far less physically active can result in weight gain. Though it is important for ME/CFS sufferers to try and incorporate some exercise into their routine, it can increase discomfort and bring about overexertion. Therefore it is recommended that physical activity is performed with caution and that individuals ensure they are eating a healthy diet to counteract reduced activity levels.

In contrast, other sufferers may experience weight loss, which is usually brought about by reduced appetite, nausea, or difficulty preparing foods. In order to minimise the risk of weight loss, individuals are advised to eat smaller meals and healthy snacks more frequently.

A Healthy Diet for CFS

In order to maintain optimum health the body requires a balance of healthy foods. If you are unsure of what you should be eating or you struggle to eat three meals each day due to an inability to cook or loss of appetite, or if you have noticed weight gain, you may require some additional help from a qualified nutritional therapist who could help you to plan a healthy diet.

What is included in your diet will really be dependent on your personal circumstances but recommendations may include one or more of the following:

Beans, Nuts, Seeds

These are a great source of protein, healthy fat, fiber and antioxidants and make great snacks for ME/CFS sufferers who struggle to eat three full meals each day.

Fruit and Vegetables

Government guidelines recommend that we try to eat at least five portions of fruit and vegetables each day in order to provide the body with the enough vitamins, minerals and antioxidants. These foods will not only help to strengthen the immune system, but can also help to improve energy levels.

Omega-3 fatty acids

Omega-3 oils work as anti-inflammatories so can help to ease pain within the body. In addition, they can also help to balance certain chemicals in the brain, which is important for fighting off depression and elevating mood.

Omega-3’s can be found in oily fish such as mackerel, salmon and sardines, as well as in flax and hemp seed and walnuts. Omega-3 can be taken as a supplement so that individuals can feel assured they are keeping their levels topped up.

Protein

Protein is an essential component in any diet as it helps to build and maintain body tissue and balance the fluctuations in blood sugar levels, which could lead to fatigue.

Protein also plays an important role in alleviating symptoms of pain and muscle weakness.

Individuals can obtain protein from lean meat, poultry, fish and eggs. Vegetarians can get their intake of protein from nuts, seeds, legumes, beans and rice.

Supplements

For those who are unable to obtain all of the recommended vitamins, minerals and nutrients from the food they eat, there is also the option of supplements. There is a huge array of available supplements, ranging from vitamins, minerals and fatty acids, through to multivitamins, which contain more than one kind of vitamin. If you are taking supplements, you must ensure that you are not taking more than 100% of your recommended daily intake.

Water

Drinking lots of water and staying well hydrated plays an important role in flushing out any chemicals which may cause fatigue.

Whole grains

A digestive system that is not in good working order can result in feelings of sluggishness and fatigue. In order to avoid this, whole grains should be included as part of a balanced diet to insure that the digestive system is kept moving and that the body is provided with the many vitamins and minerals present in whole grains.

Brown rice, barley, quinoa, oatmeal and whole wheat are some of the healthiest whole grain options so try to include these in your diet where possible.

Further Help

• Association of Young People with ME (AYME)

• The ME Association

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All content displayed on Nutritionist Resource is provided for general information purposes only, and should not be treated as a substitute for advice given by your GP or any other healthcare professional. Whilst some people have benefited from nutritional therapy, no claims can be made to treat, cure or heal specific conditions, and we strongly advise individuals with any health problem to seek independent medical advice from their GP before considering nutritional therapy.