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One Researcher's experience:
A few years ago I 'lost' whole months of my life to ME. For most of this lost period of my life I had no idea what was wrong with me; my doctors did not appear to know either. I was overtaken by this all-consuming fatigue, a tiredness, a heaviness unlike anything I had every experienced before.
My ability to do anything decreased. I became confused, unable to concentrate, noise and light became painful. It seemed to get progressively worse. Getting out of bed and walking to the bathroom or to the kitchen of my tiny flat would leave me physically and mentally exhausted and unable to do anything except sleep. I slept for hours and hours but never felt refreshed by this sleep. I would fluctuate between being boiling hot and freezing cold. Doctors were vague and unhelpful and just told me to rest. I remember being angry and thinking it wasn't that I had any alternative! My sleep was punctuated by aching muscles, huge thirsts and night sweats. It felt as if my whole body was giving up on me and it was a struggle to talk or even think, words went missing for no apparent reason, after a while I thought I must be dying but that no one knew how to tell me.
I lost all concept of time and only know that the symptoms built up over seven months from calendars and what people around me said. I managed to keep working for the first two months; then there was Christmas and a holiday, of which I remember very little. After five months I was referred on to a consultant who finally offered a diagnosis, but no hope. I was told I had ME and that I could expect to be ill for at least the next 7 or 8 years. I was told that there was nothing which could be done, that I was to get plenty of rest and not to exercise under any circumstances. If I was lucky after that time life might return to some semblance of normality, but that I might not hold down a full time job again, and certainly my life would be very different from now on.
My initial feeling was one of huge relief: even if I did not know what those two inconspicuous initials stood for, at least it had a name now; I was not going mad. Slowly the implications of what I was told to expect sunk in. I had lost a lot of time to this illness already, but I was not going to be ill for years and years, and there simply had to be something I could do about it.
What is ME?
ME, or Myalgic Encephalomyelitis, is classified as a disease of the nervous system by the World Health Organisation. It affects the individual at a physical, mental and emotional level and is most often diagnosed by the presence of a collection of symptoms, including:
Fatigue - The fatigue experienced during ME is quite unlike any other fatigue and goes way beyond normal tiredness. The fatigue is both physical and mental and is both severe and debilitating. For many sufferers, the fatigue is at its worst between 24 and 72 hours after exertion. During an episode of ME, what constitutes exertion can be as simple as getting up or even cleaning your teeth.
Muscle Pain - This is usually a dull and relentless ache, most often in the large muscle groups, it is not dissimilar to the aches experienced during a bad case of flu. This pain worsens with any exertion and even gentle massage can cause the onset of this symptom.
General Flu-Like Malaise - A general feeling of being unwell; feeling really run down and listless. For many, there is an almost permanent feeling of being on the verge of flu.
Disturbed Concentration and Memory - Short-term memory seems to be particularly affected. It becomes hard or even impossible to follow even a straightforward conversation or watch TV. Many sufferers report not being able to 'find' words, even very common and regularly used ones, when speaking.
Loss of Balance - This often manifests itself as a general clumsiness with sufferers often becoming more prone to losing their balance and falling. Feelings of disorientation are also common.
Muscle Weakness - This affects all muscle groups. As well as problems with the major muscle groups this often manifests in the eyes with episodic and variable blurring of vision.
Hypersensitivity to Stimuli1 - Sufferers often find that even the smallest of stimuli are literally painful. For example, lights may cause a burning sensation in the eyes; skin can become extremely sensitive to anything touching it with a very real pain reaction as a result.
Poor Stamina - ME sufferers are not able to maintain activities for any length of time with both their physical and mental stamina being affected. This is frequently one of the symptoms sufferers find lingers longest and often causes many knock on problems.
Alcohol Intolerance - A strong reaction to alcohol is common.
Sleep Disturbances - Despite the overwhelming fatigue, many sufferers report sleep disturbances. These can include: only being able to sleep for short periods of time, extreme restlessness and severe night sweats.
Poor Temperature Control - Many sufferers find that they feel both the cold and the heat more than normal. Additionally, they may find themselves feeling very cold when it is hot and vice versa.
Headaches and Migraines - Many different types of headache are reported but most common are a dull ache around the temples or migraines.
Mood Swings - Sufferers often feel out of control of their moods as they swing between emotions without obvious reason. This can be particularly hard for those caring for those with ME. Those with ME often feel isolated and alone even if surrounded by people that love them. During an episode it can feel impossible to believe this, or that anyone could want to be with you.
The Impact of ME
The symptoms can fluctuate wildly, with different symptoms affecting the sufferer more at certain times. It is not uncommon to have good days and bad days, frequent remission and relapses. On good days there is a temptation for the sufferer to do too much and get worse again. What constitutes too much for someone with ME is far less than normal; making a cup of tea may be too much, and only over time can the sufferer learn how much they are capable of doing.
While on a 'good' day a sufferer will look normal, it is often hard for people around them to realise that they are ill. This can lead to many misunderstandings: people assuming that the sufferer is just being lazy, uncooperative or anti-social. Some people believe that the symptoms are all in the sufferer's head and that if they were to just make an effort and pull themselves together then they would be fine. This can further fuel the mood swings and depression that ME causes.
Unfortunately ME can lead to people's lives, careers, relationships and families being torn apart. There is no doubt that it fundamentally changes relationships in ways that are not always survivable. The impact on a career of frequent or prolonged absence and the possibility of relapses are understandable and have led many sufferers to suspend or end their careers. The financial pressure that this causes alone marks a fundamental change in people's lives.
ME also impacts those around the sufferer who find it hard to understand. Friends may not know how to include the sufferer who, when they are having bad days, is not able to even cope with a phone conversation or who frequently has to change plans at the last moment. For family it can be devastating to watch the person they love no longer able to cope with the things they previously did. Partners often feel resentful of the illness and guilty for feeling that way. The sustained uncertainty that ME brings requires long term adaptations for everyone.
Depression is often cited as a symptom of ME, and many sufferers find themselves being treated for depression before they are diagnosed as having ME. This common misdiagnosis is understandable since many of the symptoms overlap and sufferers often becoming depressed as a result of the condition.
What Causes ME?
The causes of ME, which is also known as Chronic Fatigue Syndrome or Post Viral Syndrome, are unknown and there is no single identifiable cause. Most commonly, ME is triggered by a viral infection. Some believe that some individuals have a genetic predisposition - the viral infection being the single event which triggers the episode. Other theories link the causes to environmental toxins or psychiatric illness.
Anecdotal evidence suggests that there is a type of person who is most likely to be affected by ME. They are often highly articulate, driven perfectionists who push themselves in all areas of life. Typically, before they get ill, sufferers have led very busy and active lives; many have held high pressure jobs and have a record of achievement. The prevalence of the illness in this kind of person led to it being known as 'Yuppie Flu', which further developed the misconceptions many people held about this illness.
How Common is ME?
The exact number of sufferers of ME in the UK is not known, as the condition is often not diagnosed and there have been few studies. Best guesses suggest that there are around 150,000 ME sufferers in the UK.
What Can be Done?
There is no currently accepted cure for ME and no universally effective treatment is known. Treatments that are effective for one person are often unproductive or even counterproductive for others.
Early diagnosis, as with so many illnesses, is key, as adequate rest during the initial acute phase or during any relapses seems to bring the most significant improvements.
ME is a very individual condition and the best combination of treatments and management techniques will be equally individual. Sufferers learn over time to manage their symptoms and their energy levels. Many learn to plan to do more, knowing that they will need to work in long rest periods after certain events. Some describe thinking of energy as a bank account - borrowing against future energy to do the things that are most important. There is no doubt that sufferers become very good at both prioritising and finding low-energy ways of performing everyday tasks.
Plenty of rest and a healthy diet are both essential. Many sufferers also benefit greatly from complementary treatments such as aromatherapy, nutritional therapy2, kinesthiology3, acupuncture, yoga and gentle massage. For those suffering with depression, anti-depressants can help them to cope with the illness but are not cures in themselves.
Many cite the soothing effect of keeping pets as having been essential in their recovery. Learning and practicing relaxation techniques is certainly essential and sufferers must also learn to remove as much stress as possible from their lives.
It is uncertain whether the illness can be permanently cured, but over time the sufferer learns to cope and find the right combination of treatments and energy management techniques. Slowly it is possible to build back towards 'normality'. It may, however, take many years and will include many lifestyle changes. Within a few years most sufferers are no longer at the mercy of their symptoms and are back in control of their lives.