Dear Dr Le Fanu,
Thank you for your sensible article on chronic fatigue syndrome or myalgic encephalomyelitis (ME/CFS). It's refreshing to read common-sense reporting about the illness rather than baseless hyperbole that has no relevance to patients' lives. For wide-ranging reasons, the lives of patients, such as myself, are actually harmed by misguided claims that exercise and positive thinking can cure the illness.
As you reported, a Telegraph front-page article had claimed that exercise and positive thinking can cure ME/CFS. However, the study in question did not actually investigate exercise. It investigated a therapy known as graded exercise therapy, that involved carefully managing activity levels, starting with a reduction in activity levels. After establishing a sustainable baseline of activity, patients were encouraged to carefully, incrementally and gradually increase activity . If symptoms flared up then activity levels could be reduced to avoid problems. Activities could include simple stretching exercises or walking a few steps.
There is a wide consensus that exercise can be harmful for ME/CFS patients and can lead to a profound and long term increase in symptoms. This feature of the illness is commonly known as post-exertional malaise, and can involve an exacerbation of all the symptoms involved in ME/CFS, such as exhaustion, pain, flu-like symptoms, cognitive impairment. This reaction can happen even after minimal exertion. Many patients have reported experiencing a severe and profound long-term deterioration in their illness after over exertion, so to be told that exercise can cure the illness, is not just wrong, it's dangerous. Patients can't rely on their care providers to have read the scientific literature, so we need accurate reporting. Misleading reporting can and does lead to conflict between patients and clinicians because of a widespread ignorance about the nature of the illness.
If cancer patients or multiple sclerosis patients or Parkinson's disease patients were told that positive thinking and a bit of exercise could lead to a cure, there would rightly be widespread outrage. But apparently it's OK to say it about ME/CFS patients. Patients are left wondering why this is. We conclude that we're an easy target because of the ignorance surrounding the illness. Because the illness is not understood, and the symptoms are not obvious except to the patients, and there are no biomarkers for the disease, it's easy to blame the patient for their invisible illness. ME/CFS patients are an easy target for ignorant attitudes. Negative experiences of patients within the health care system are widespread and easy to come across online. The negative experiences range from casually dismissive attitudes to downright hostility. When newspaper articles suggest that a positive attitude and some exercise will cure you, this is an extension of the widespread ignorance. It also perpetuates the ignorance. Such advice is infantile and borne of a refusal to engage with patients or to consider the scientific literature.
There is evidence that demonstrates that exercise causes an unusual or unique physiological and biological reaction in ME/CFS patients. In a two day cardiopulmonary exercise test, patients are worse at performance (e.g. on measures such as oxygen uptake and metabolism) on the second day whereas deconditioned patients perform the same or better on the second day. This is because symptoms are exacerbated by exertion. Genetic expression has a unique profile after exercise in ME/CFS patients.
ME/CFS fluctuates over time, and there are different levels of impairment between patients. To suggest that ME/CFS patients have a negative attitude and never engage in activity is deeply ignorant and implies that patients are not really ill but are just lazy people who have given up on life. However, mildly affected patients often continue to work, and battle hard to overcome their limitations. They struggle intensely, and weekends can consist entirely of lying in bed recuperating. These are not lazy deconditioned people with a negative attitude. I challenge you to find more motivated people with a better attitude. Even moderately affected patients, even though they are often house bound with intense exhaustion and pain, can get out of the house on a good day to meet a friend or to buy some groceries. They are not deconditioned; they are ill. Activity levels are increased as symptoms allow, and a sudden crash will result in an adaptive reduction of activity, just as you would reduce your activity levels if you had a bout of flu. Severely affected patients are mainly bedbound and have to cope with intense pain, cognitive symptoms and exhaustion. Studies have shown that quality of life measures in ME/CFS patients are worse than in many other severe illnesses, such as rheumatoid arthritis, chronic renal failure, angina, and type 1 and 2 diabetes.
Since becoming ill, I have met the most inspiring people from all walks of life, who were suddenly struck with a flu-like illness that never left them. People leading successful, dynamic, happy lives. I've met doctors, teachers, scientists, nurses, journalists, business managers. I was a nursing assistant, and I became ill during a shift, never to recover. The patient community cares for each other because we have to overcome the all-too-common negative attitudes from health care providers, medical authorities and the media. And I have met wonderful people with brilliant attitudes, with a range of illness severity.
Imagine waking up one morning. You have flu. You can't stand up because of weakness. Your head is spinning. You can't think clearly. Your joints ache. It's OK, you think, it's just flu so you'll take a few days off work. Two weeks later, you are still ill, so you scrape yourself of the sofa and crawl to the doctor. It's OK, she says, it's just a cold. It will pass. Another two weeks go by. You are worried. Why isn't it improving? Everything you do makes you collapse into a heap of exhaustion. The doctor says you're exaggerating. It will pass. Another month, and you're bewildered, frightened, lonely. You attempt a disastrous return to work. What's happening? A year later, after little change, you get a diagnosis. Ten years later you're still ill. Welcome to the world of an ME/CFS patient. It can happen to anyone, and does happen to anyone. The illness does not discriminate.
A few days ago, the Telegraph reported that a recent study, known at the PACE trial, found that exercise and positive thinking would cure ME/CFS patients of their symptoms. But, not only did the study not investigate exercise or positive thinking, but also the results of the study were not as reported. On close inspection of the results, it seems that graded exercise therapy and cognitive behavioural therapy were no better than usual care. They had no treatment benefit at long term follow up. It turns out that the Telegraph was reporting spin, rather than facts. The therapies made no difference. If a patient hadn't received the therapies, they'd be in exactly the same state of health as if they had received the therapies two years ago. How, from this, did the Telegraph conclude that exercise cures ME/CFS?
