| It is little wonder that recently a women from the | | | | are still likely to be able to do a job, but may |
| UK had her cause of death confirmed as ME by | | | | often take days off work. In order to remain in |
| the Coroner! This tragic news comes as no | | | | work you are likely to have stopped most leisure |
| surprise to myself and most sufferers of CFS/ME | | | | and social activities. Weekends or other days off |
| which continues to be classified as a Neurological | | | | from work are used to rest in order to cope. |
| Disorder by both th CDC and N.I.C.E who | | | | - Moderate cases - you have reduced mobility |
| unfortunately continue to advise governments and | | | | and are restricted in most activities of daily living. |
| as a result no extra funding is given for research. | | | | The level of ability and severity of symptoms |
| What is CFS/ME? | | | | often varies from time to time ('peaks and |
| CFS/ME is a condition that causes marked | | | | troughs'). You are likely to have stopped work |
| long-term fatigue and other symptoms which are | | | | and require rest periods, often sleeping in the |
| not caused by any other known medical condition. | | | | afternoon for one or two hours. Night-time sleep |
| However, there is controversy about the nature | | | | tends to be poor and disturbed. |
| of this condition. There is no test to diagnose the | | | | - Severe cases - you are able to carry out only |
| condition. The diagnosis is made in people who | | | | minimal daily tasks such as face washing and |
| have a certain set of symptoms (which can vary | | | | cleaning teeth. You are likely to have severe |
| in their type and severity). There is even | | | | difficulties with some mental processes such as |
| controversy about what to call this condition. | | | | concentrating. You may be wheelchair dependent |
| - The term CFS is often used by doctors. This is | | | | for mobility and may be unable to leave your |
| because the main symptom is often fatigue and | | | | home except on rare occasions, and usually have |
| the condition is chronic (persistent). Also, there is | | | | severe prolonged after-effects from effort. |
| no evidence of inflammation in the brain or spinal | | | | - Very severe - you will be unable to mobilise or |
| cord which is implied by the term | | | | carry out any daily tasks for yourself and are in |
| encephalomyelitis. | | | | bed for the majority of the time. You are often |
| - The term ME is the preferred term by many | | | | unable to tolerate any noise, and are generally |
| people with the condition. Some people with this | | | | very sensitive to bright light. Most cases are mild |
| condition feel that the term 'fatigue' is an | | | | or moderate but up to 1 in 4 cases are severe or |
| everyday word which does not reflect the | | | | very severe. |
| different and severe type of fatigue that they | | | | What is the treatment for CFS/ME? |
| have. Also, although fatigue to some extent | | | | There is no known cure for CFS/ME although |
| occurs in most cases, it may not be the main or | | | | treatment may help to ease symptoms. Three |
| only symptom. | | | | commonly tried treatments which seem to help in |
| - Some people believe that there are two | | | | some cases are graded exercise, cognitive |
| separate conditions - CFS and ME. Other people | | | | behaviour therapy, and pacing. |
| believe that the two conditions are the same - | | | | Graded exercise |
| but symptoms can vary. Until these issues are | | | | Graded exercise means a gradual, progressive |
| resolved, many people now use the 'umbrella' | | | | increase in aerobic activities such as walking or |
| term of CFS/ME. | | | | swimming. It is based on the theory that a factor |
| What causes CFS/ME? | | | | that helps to maintain the illness is inactivity, with |
| The cause of CFS/ME is not known. There are | | | | subsequent physical 'deconditioning'. A very gradual |
| various theories - but non are proved. A popular | | | | increase in the level of exercise is thought to help |
| theory is that a virus infection may trigger the | | | | to reverse this process. Some research studies |
| condition. It is well known that fatigue is a | | | | showed that, on average, people with CFS/ME |
| symptom that can persist for a short time after | | | | improved with a structured programme of graded |
| having certain virus infections. For example, | | | | exercise compared to those who did not have |
| infection with the glandular fever virus or the | | | | this treatment. |
| influenza virus can cause fatigue for several | | | | However, the research studies only included |
| weeks after other symptoms have gone. | | | | people who were able to attend the course of |
| However, most people recover within a few | | | | treatment. That is, those people only mildly or |
| weeks from the fatigue that follows known viral | | | | moderately affected. It is not known whether this |
| infections. Even if a viral infection is a trigger of | | | | treatment is useful for everyone with CFS/ME, |
| CFS/ME, it is not clear why symptoms persist | | | | especially those with severe or very severe CFS |
| when there is no evidence of persisting infection. | | | | ME. Some people with CFS/ME say that graded |
| Also, the symptoms of many people with CFS | | | | exercise has made them worse. |
| ME do not start with a viral infection. | | | | Therefore, it seems that graded exercise is an |
| There are various possibilities. For example: | | | | option to consider. But, only after a full discussion |
| - CFS/ME may not be one or even two | | | | with your doctor, and with agreement to the rate |
| conditions. It may include several conditions each | | | | at which the level of exercise is increased over |
| with a different cause. Each of the conditions may | | | | time. It should be tailored to suit each individual |
| cause similar symptoms, but with present | | | | case. Ideally, it should be supervised by a |
| knowledge cannot be distinguished, or: | | | | physiotherapist or occupational therapist who is |
| - CFS/ME may be one condition, but which may | | | | used to treating people with CFS/ME. |
| be triggered by more than one cause, or: | | | | Cognitive behaviour therapy (CBT) |
| - CFS/ME may be one condition, with one cause. | | | | Cognitive therapy is based on the idea that |
| Hopefully, research will clarify the cause of CFS | | | | certain ways of thinking can 'fuel' certain health |
| ME in the future. | | | | problems. Behaviour therapy aims to change any |
| Who gets CFS/ME? | | | | behaviours that are harmful or not helpful. CBT is |
| CFS/ME can affect anyone. The precise number | | | | a combination of cognitive and behaviour therapy. |
| of people affected is not known. It is estimated | | | | The use of CBT does not imply that the cause of |
| that CFS/ME affects about 1 in 300 people in the | | | | an illness is psychological. CBT can help various |
| UK, possibly more. It is about twice as common in | | | | physical and mental health problems. |
| women than in men. The commonest age it | | | | CBT does not aim to 'cure' the condition but helps |
| develops is early twenties to mid-forties. In | | | | to improve symptoms, coping strategies, and |
| children the commonest age it develops is 13-15, | | | | day-to-day functioning. For people with CFS/ME |
| but it can develop at an earlier age. | | | | the core components of CBT would normally |
| How is CFS/ME diagnosed? | | | | include: energy/activity management, |
| There is no test that proves that you have CFS | | | | establishment of a sleep routine, goal setting, and |
| ME. A doctor will usually diagnose CFS/ME based | | | | psychological support. Research studies looking at |
| on the symptoms. Some tests may be done to | | | | CBT for CFS/ME found a positive overall effect |
| rule out other causes of fatigue or other | | | | of the treatment. The studies showed that most |
| symptoms that develop. For example, blood tests | | | | people who completed a course of CBT improved |
| may be done to rule out anaemia, an underactive | | | | in both function and fatigue. |
| thyroid gland, liver and kidney problems, etc. All | | | | One problem is that CBT is not widely available in |
| the tests are normal in people with CFS/ME. | | | | the UK on the NHS. If it is available in your area, it |
| The strict medical definition of CFS/ME states | | | | is certainly worth considering in addition to any |
| that symptoms should have lasted for at least six | | | | other treatment. Also, like graded exercise, the |
| months. However, the diagnosis is often made | | | | research studies did not include those who were |
| sooner than this if other causes of fatigue and | | | | severely affected with CFS/ME and it is not |
| other symptoms have been ruled out. | | | | known if it will help in this situation. Also, some |
| What are the symptoms of CFS/ME? | | | | people who start a course of CBT (for any |
| The onset of symptoms can be fairly sudden | | | | condition) drop out of the course for one reason |
| (over a few days or so), or more gradual. | | | | or another as CBT does not suit everybody. |
| Fatigue | | | | Pacing |
| The most common main symptom is persistent | | | | Pacing is a strategy in which people with CFS/ME |
| fatigue (tiredness). The fatigue is of new onset. | | | | are encouraged to achieve a balance between |
| That is, it has not been life-long but started at a | | | | rest and activity. This usually involves living within |
| point in time and causes you to limit your | | | | the limitations caused by the illness, but having |
| activities compared to what you were used to. It | | | | some limited types of activity alternating with |
| is often felt to be both physical and mental | | | | periods of rest. The aim is to prevent a 'vicious |
| fatigue, and said to be 'overwhelming', or to be | | | | circle' of overactivity and setbacks ('boom and |
| 'like no other type of fatigue'. For example: | | | | bust'), while setting realistic goals for increasing |
| - It is very different to everyday tiredness (such | | | | activity when appropriate. The theory is that if |
| as "after a days work"). | | | | you use your energy wisely, your limited energy |
| - It is not eased much by rest. | | | | may increase gradually. |
| - It is not due to, or like, tiredness following | | | | Again, there is controversy over pacing as a |
| overexertion. | | | | specific 'therapy' as there is little research |
| - It is not due to muscle 'weakness'. | | | | evidence that has shown how effective it is. |
| - It is not 'loss of motivation or pleasure' which | | | | General support |
| occurs in people who are depressed. The fatigue | | | | Depending on the severity of illness, other support |
| is often made worse by activity. This is called | | | | may be needed. For example, carers, nursing |
| 'post-exertional malaise'. However, the | | | | support, equipment and adaptations to the home |
| post-exertional malaise may not develop for | | | | to help overcome disability. |
| several hours or more following the activity. It | | | | Treating associated symptoms |
| may even develop on the following day. | | | | Depression is quite common in people with CFS |
| Other symptoms | | | | ME (as it is with many other chronic diseases). |
| In addition to fatigue, one or more of the | | | | Depression can make many symptoms worse. |
| following symptoms are common (but most | | | | Antidepressants may be prescribed if depression |
| people do not have them all). In some cases, one | | | | develops and may help to ease some of the |
| of the following symptoms is more dominant than | | | | symptoms (for example, pain, poor sleep). |
| the fatigue and is the main symptom. | | | | Painkillers may help if muscle or joint pains are |
| - Mental ('cognitive') difficulties such poor | | | | troublesome symptoms. |
| concentration, reduced attention span, poor | | | | Other treatments |
| memory for recent events, difficulty to plan or | | | | As there is only limited success with conventional |
| organise your thoughts, difficulty 'finding the right | | | | treatments it is understandable that people turn |
| words' to say, sometimes feeling disorientated. | | | | to complimentary practitioners. Many people with |
| - Sleeping difficulties. For example, early waking, | | | | CFS/ME find various therapies helpful. However, |
| unable to sleep, too much sleep, disrupted sleep | | | | there is little research evidence to say how |
| wake patterns. | | | | effective complementary therapies are for CFS |
| - Pains - most commonly muscular pains (myalgia), | | | | ME. Also, there is some concern that some |
| joint pains, and headaches. | | | | therapists cause confusing or misleading health |
| - Recurring sore throat often with tenderness of | | | | beliefs, recommend unnecessary tests, and may |
| the nearby lymph glands. | | | | prescribe treatments that have no scientific proof |
| - Intolerances and sensitivities to foods, alcohol, | | | | of success (and in some cases can be harmful). In |
| noise and bright light. | | | | particular, beware of anyone who claims to have |
| - Gut symptoms similar to those that occur in | | | | a 'cure' for CFS/ME - especially when it costs a lot |
| 'irritable bowel syndrome'. For example, excess, | | | | of money. |
| wind, bloating, alternating diarrhoea and | | | | What Can we do to Help? |
| constipation, abdominal pains, nausea (feeling sick). | | | | If you Live in the UK and would like to help make |
| - A range of other symptoms have been | | | | a change and help the sufferers there is currently |
| reported in some cases such as dizziness, excess | | | | an official Government petition that is trying to |
| sweating, difficulties with balance, and disordered | | | | force the Prime Minister to re-think its take on |
| temperature control of the body. | | | | medical research into CFS/ME. The petition has |
| The severity of symptoms | | | | been organised by CFS and ME Awareness a |
| The severity of CFS/ME can roughly be divided | | | | voluntary organisation which is both an activist |
| into four levels: | | | | & fund raising group who sole motivation is |
| - Mild cases - you can care for yourself and can | | | | helping people with this soul destroying disease. |
| do light domestic tasks, but with difficulty. You | | | | |