We need to stop dismissing awful ME
I’M SEEING a lot of patients with ME (Myalgic encephalomyelitis). Some 12,000 Irish people are thought to suffer from it. Despite some doctors dismissing it, the WHO recognise it as a defined illness. ME is often cited as being more debilitating than conditions like multiple sclerosis or diabetes.
It has been renamed chronic fatigue syndrome. This is a kick in the teeth to sufferers, as it intimates that all that’s wrong is they are tired. Yet this is much more than tiredness. Those with a mild version of the condition will be limited in their daily activities due to fatigue. If they have periods of mental or physical exertion, they may take 72 hours to get ‘right’ again. The biggest issue for those affected is people accepting that this is a medical condition, not malingering. Most sufferers are between 20 and 40. Women suffer more than men and there may be a family predisposition. Glandular fever, or any physical or mental stress may trigger it. It’s a time in your life when you want to be active, yet your body is begging you to lie down. Sufferers will often go to their GP, only to be told that their test results and physical examination is normal. When there is no explanation, chronic fatigue is often the explanation.
The biggest difficulty with this condition is the diagnosis. You only come to the diagnosis when you have ruled everything else out. This means the patient has been back and forth to the surgery on several occasions. There are no tests to validate the diagnosis. ME is not a diagnosis I like giving out due the potential stigma attached to it and the lack of strategy to manage it. Then, there is the discussion with the patients about treatment. We use a multi-pronged approach of graduated exercise regimes, cognitive behavioural therapy and medication. There are no resources to rehabilitate this type of patient. I struggle to find specialists to take them on. I can only offer them a supportive ear, encouragement and advice that this too will hopefully pass.
Some of my colleagues adopt a fight it, get up and get on with attitude — but that can often make symptoms worse. When they join an ME support group, patients finally feel they are understood. It is with the help of their peers, not the medical profession, that they progress and become positive. Just as the patient needs to accept their illness, we too need to accept this is an illness and be supportive — not dismissive.