Separating Fact From Fiction

I wasn't planning to do another post about a medical issue so soon after the last one - this is meant to be primarily a gardening blog, after all - but today is International ME Awareness Day, so I thought perhaps I should mention it. There are still a lot of myths circulating about ME (aka CFIDS if you're across the pond), which get repeated ad infinitum to people who have it. Some are understandable, some peculiar, and some downright offensive - I decided to have a look at a few of the most common ones.

Myth: ME is something yuppies get.
Fact: ME can effect anyone: small children and elderly people; town and country dwellers; rich and poor; men and women; people of any race, creed or colour; farmers, factory-workers, builders, doctors, teachers, gardeners, administrators; people from all walks of life. ME is no respecter of persons.

Myth: ME is a psychological illness.
Fact: In the 1970s some psychiatrists published an article in a medical journal suggesting that ME might be a mental illness. Although this was just a theory, it was widely accepted by the medical profession at the time. However, research done over the past 30 years has completely discredited the theory, and ME is now classified as a neurological illness by the World Health Organisation (ie it's in the same category as conditions such as multiple sclerosis, stroke, and motor neurone disease). Ironically, in the 1950s, MS was also considered to be a mental illness ... some people never learn.

Myth: ME is caused by stress.
Fact: No-one knows the underlying cause of ME (ie why some people get it and others, in the same situation, don't). Genes are certainly a factor: some people have a genetic predisposition to the illness, and it is common for more than one person in a family to be effected. ME is usually triggered by a viral illness such as glandular fever, meningitis, or 'flu; in a significant minority of cases it is triggered by an allergic reaction to medication or a vaccination, or by exposure to other chemicals such as pesticides. It can also be triggered by any physical trauma, for instance having a heart attack or being in a car accident. There is no evidence to suggest that it can be triggered by stress, but once a person has ME, stress does make the symptoms worse.

Myth: ME is just feeling tired.
Fact: ME disrupts the way the brain communicates with the body, which means it can effect any system or function of the body - the nervous system, the hormones, the digestive system, the muscles, the immune system, the senses, and so on. Exhaustion, especially after exercise, is one of the defining characteristics, but there are many others - almost anything that can go wrong with the body could be due to ME. Symptoms vary from person to person, but also any one individual with ME is likely to experience symptoms which vary from day to day. As well as post-exertional malaise, the more common ones include cognitive disfunction (eg short-term memory loss, slurred speech, forgetting words or using the wrong ones in the way stroke sufferers do), severe headaches, muscle and joint pains, frequent sore throats, swollen or tender glands, and sleep disturbances. People with ME are often extremely sensitive to noise and light, and are unable to tolerate a range of foods as well as many medicines and other chemicals.

Myth: People with ME would get well if they exercised.
Fact: As I've just said, one of the defining characteristics of ME is that exercise causes exhaustion. Despite this, the NHS bizarrely continue to recommend Graded Exercise Therapy (GET) as a treatment for ME. Extensive surveys of people with ME show that those who have tried this are considerably more likely to be made worse by it than they are to be made better. Evidence shows that the symptoms of people with ME are more likely to improve if they pace themselves, rest whenever necessary, and eat a healthy diet.

Myth: I get tired, so I know people with ME must feel.
Fact: No, you really don't. If you ran a marathon yesterday while suffering from jetlag, spent the evening celebrating at a nightclub, staggered home around midnight and discovered that your next-door neighbour was having a party, lay awake all last night listening to the loud thumping music, finally got to sleep at 6 this morning only to be woken by your other neighbour doing some building work at 7, tried to sit up and found that you have a hangover and you think you're going down with 'flu ... then you have some glimmer of an idea of what tiredness means. But you still don't know what it feels like to have ME, because you haven't felt like that regularly for the last five, or ten, or fifteen years, and you don't expect to feel like that regularly for another five, or ten, or fifteen years.

Myth: There's a cure for ME: I saw it in the newspaper/on the internet.
Fact: There is no cure for ME. There are some treatments which help some individuals with some of their symptoms, but there is nothing which works for everyone, or even for the majority, and there is nothing which treats the underlying cause of the illness. Many people with ME do make a partial recovery; a few recover completely, but something which helped one person with the illness is not a cure and will not work for most others. There are a number of people who claim to have a cure for ME: some are well-meaning and have simply not grasped the difference between treatment and cure; sadly though, many are just out to make money from vulnerable people.

Myth: ME isn't serious - no-one dies from ME.
Fact: While most ME-related deaths are from suicide or assisted suicide, like the recent case of Lynn Gilderdale (and if you don't think ME is serious, click on the link and read the article about her), there have been other deaths more directly related to the process of the illness. ME can effect any system of the body, and there have been recorded cases of ME disrupting functions of the body so much (eg causing kidney failure) that it leads to death.

Myth: People with ME are lazy - they're just malingering.
Fact: If you've read this far, you'll hopefully realise that this is just insulting. It is, however, something which some people genuinely believe. Apart from basic ignorance, one of the reasons they do believe it is because ME symptoms fluctuate, so people with ME have good days and bad days. If a person sees a neighbour they know has ME spend an hour weeding the garden, hang out the washing, and walk to the shops one day, they may find it hard to understand that their neighbour is unable to get up off the sofa the next day. In fact, if a person with ME does that much exercise in one day, it's highly likely that they'll be unable to get up off the sofa the next day! Most people with ME are intensely frustrated at being incapacitated, and desparately want to get on with their lives, so their inclination is to do too much, which results in periods of enforced rest.

Myth: ME is a modern illness.
Fact: ME has been well documented since at least the 1950s, but experts believe it has existed for centuries. People thought to have suffered from ME include Charles Darwin and Florence Nightingale. 12 May was chosen to be International ME awareness day because it is the anniversary of Florence Nightingale's birth.

Myth: People who say they have ME are really suffering from depression.
Fact: This is an extraordinary thing to say. No-one says to someone with cancer that they are really suffering from depression; for that matter, no-one says to someone with depression that they are really suffering from diabetes. Many illnesses have an overlap of symptoms, but they also have ones which make them quite distinct from one another. The majority of ME symptoms are different from those of depression; the patient's attitude to life is different; and treating someone who has ME as though they have depression (or vice versa) is a bit like treating someone with a broken leg as though they have chicken pox: worse than useless.

Myth: ME is the same as Chronic Fatigue.
Fact: This is a more understandable mistake, and the explanation is rather complicated. ME is not thought to be the same as Chronic Fatigue, which, as the name suggests, is primarily characterised by tiredness, and is generally a much less severe condition. However, the names ME and Chronic Fatigue Syndrome (CFS) are often used interchangeably by medical practitioners, despite the fact that the two conditions have different clinical definitions. As a result of this, most ME charities and experts in the field now refer to ME/CFS. Patients prefer the term ME (which stands for Myalgic Encephalomyelitis, basically meaning inflamed brain and aching muscles). It's not an ideal name, as it's not really an accurate description of the illness, but it's thought to be better than CFS, which gives the impression that it is mainly to do with being tired. However, there is probably some overlap between the two conditions, and also between them and Fybromyalgia (FM), and Post-Viral Fatigue Syndrome (PVFS). Is your brain spinning yet? These are just the acronyms used in the UK. To complicate matters further, in America, ME is known as Chronic Fatigue and Immune Disfunction Syndrome (CFIDS) and there's been some talk of renaming it Neuro-Endocrine-Immune Disfunction Syndrome (NEIDS), which would be a more accurate description of it but would add to the confusion!

Myth: You don't look ill.
Fact: This may well be true, but they implication here is " ... therefore you're not ill", which is false. If you meet a person with ME, very often they will not look ill - it is what is known as an invisible disability. These are thought to make up an astonishing 96% of chronic medical conditions. A deaf person, for instance, may not look as though there is anything wrong with them if they are not wearing a hearing aid which makes it obvious - but this does not mean they will hear you if you speak to them. If you meet a person with ME, they may well have spent the previous day resting in preparation for going out, washed their hair, put on clean clothes, perhaps applied make-up. They may have a blue badge, but you might not be aware of that because when you see them they are apparently able to walk. They may have a wheelchair, and/or mobility buggy, but if they get out of it to go into a shop or take a photo of a plant, this doesn't mean they don't need it - it means they need it if they try to do more than this. They may be able to chat to you like a "normal" person: they will probably be cheerful and make light of their illness. What you don't see is that when they go home after the enormous effort of talking to you, they are likely to collapse, unable to think or speak coherently, aching, exhausted, and needing another day or two's rest in order to recover.

More information about ME