On this page, we try to answer many of the questions you might have, including what is Chronic Fatigue Syndrome (CFS), the causes and physical effects of the disease.
Chronic fatigue syndrome (CFS) is an illness characterised by:
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Extreme fatigue
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Post exertional malaise
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Sleep disturbance and non-restorative sleep
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Swollen glands and/or sore throat
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Muscle and joint aches and pains
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Impaired concentration and memory
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Mood changes
It is possible to have other illnesses at the same time such as fibromyalgia, irritable bowel syndrome, gynaecological problems, diabetes, anxiety, depression etc.
The cause of CFS is not yet known. Current theories suggest the importance of one or more viral agents, certain environmental triggers, an unquantifiable genetic predisposition or a combination of these factors, particularly when combined with stressful life events.
Some possible causes include:
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Persistent viral infection
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Immune disturbance of unknown cause
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Disturbance of the HPA (hypothalamic pituitary axis)
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Primary muscle/nerve disease
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Primary central nervous system disease
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Autonomic nervous system disease
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Neural hypersensitivity syndrome
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Prolonged and persistent stress
It is difficult to predict recovery in Chronic Fatigue Syndrome and there is enormous variation even in people with similar degrees of CFS severity. Remaining optimistic and positive is certainly helpful as it is in many chronic illnesses. The Sutton and St. Helier CFS Service hope and expect many of our patients to achieve a good quality of life even if they do not make a full recovery to their pre-illness levels of activity.
There is currently no clear answer to this question. Some people with CFS do suffer a set back following the flu injection, but this is unlikely to be as severe as getting flu. For this reason many CFS sufferers choose to have the injection. We do know that if you have CFS you are at no greater risk of the complications of flu e.g. pneumonia than any other member of the population.
There is no evidence that following any particular diet will improve your CFS although many patients appear to be intolerant to alcohol and other stimulants such as caffeine based products. Food allergy is never involved in CFS. The blood investigations that form part of the referral process will help exclude coeliac disease caused by gluten sensitivity. The CFS service recommend that you follow the Government healthy eating guidelines.
Yes it is safe to get pregnant with CFS. It is thought that about one third of women experience fewer CFS symptoms during pregnancy, one third stay about the same and the remaining third experience increased symptoms. Unfortunately hard data on this issue is not available but it is likely that those with CFS who are mentally prepared for the joys and hard work of child care and those with strong family support do best.
There are reports confirming an increased frequency of CFS in the children and relatives of those with this condition. However, this inheritance is far from straight forward and people should not worry about passing on CFS to their children or having gained it from their parents. The mechanism for the mildly increased risk of CFS in family members is unclear. It is the opinion of this service that it is likely related to a shared history of common infections, environmental factors and perhaps stressful events. The contribution of each of these variables in an individual person with CFS is likely to be different and almost impossible to determine accurately.
Many patients report that a change in routine and being away from daily stressors has a beneficial influence on their symptoms. However other's report the change of routine as well as the journey and preparation for going on holiday can increase stress levels and have an impact on their symptoms. Being prepared for the latter, taking pre-emptive rest and breaking up the journey can certainly encourage a more enjoyable holiday.
Many patients report feeling a little worse during winter months, possibly due to reduced natural day light and a reduction in temperature. Some patients find use of light boxes or early morning gradual natural light exposure alarms helpful. Physical symptoms such as pain are at times increased by the cold weather, thus it is important to find ways keep warm e.g. heat pack.
The Sutton and St. Helier CFS Service understand CFS as a real, and not imagined, chronic medical illness. However the psychological impact of living with a chronic illness that impacts on widespread areas of a person's life e.g. work, relationships, leisure and finances is very significant. The multidisciplinary team is therefore able to address all aspects of living with a chronic physical illness.
The way to be referred into the CFS is via a referral from your General Practitioner. There are referral forms on our website that your GP can access. We will accept a referral from your GP on full completion including complete blood tests outlined on the CFS service's website.
There are many alternative therapies people with CFS can access, which may cover something as simple as breathing techniques through to life coaching. The Sutton and St. Helier CFS Service bases it's treatments and therapies on evidence based guidelines which have been shown to be helpful. We do, however, recommend that people considering using expensive alternative therapies investigate these thoroughly and that practitioners advocating their use justify their results with concrete data of the benefit. As with all therapies we advocate regular assessment to ascertain whether there is continued benefit.
The CFS service has no formal links with benefits agencies. However if you are looking into the benefits that you may be entitled to we recommend you contact the Department of Work and Pensions, Citizens Advice Bureau (CAB) or alternatively you can look on the DirectGov website.
The CFS service see patients with a wide range of symptoms some of which will be common to most patients. However, some people will experience symptoms that are unusual and which they may find worrying. If you are unsure of a symptom it would be best to check with a CFS clinician or you GP.
Some patients report various supplements to be helpful. However there is no clear scientific evidence to support benefits gained from the taking of supplements. (National Institute for Clinical Excellence guidelines, 2007). Patients are recommended to discuss possible contra-indications of taking supplements with their GP. It is also important to acknowledge the cost involved in long term use of taking supplements.
The DVLA indicates that anyone who has been given a new medical diagnosis since obtaining their driving license is obliged to inform them.
Often disability is based on one's level of function due to a medical condition. If your level of function is significantly impaired as a result of having CFS you are likely to considered as having a disability.
You are under no obligation to disclose your diagnosis of CFS. However there may be occasions where an application form requests specific medical information. It is worth noting that if you do not disclose CFS to an employer you do not come under the cover of the Disability Discrimination Act 1995 and therefore would be unable to seek 'reasonable adjustment' in your workplace.
