I thought that this is an interesting ME-related article on the Reuters blog. Apart from the fact that the author seems to view ME and CFS as the same condition, it is well worth reading.
By Edward Hadas JUNE 11, 2014
The author is a Reuters Breakingviews columnist. The opinions expressed are his own.
Modern economies work to meet consumers’ needs. So if needs are not met, that must be an economic failure, right? Healthcare suggests otherwise. Sometimes, unhelpful ideologies get in the way of economics delivering the goods.
Chronic fatigue syndrome (CFS) – also known as myalgic encephalopathy (ME) – is a case in point. The economic benefit of treating this difficult condition should be material for patients, drugmakers and society. Yet the treatment is poor.
CFS is still a mystery. It is identified mostly by its long list of symptoms, starting with persistent exhaustion. What seems to be happening is an interconnected network of malfunctions in the nervous, circulatory and digestive systems. Estimates of the number of sufferers vary greatly. Something like 0.1 percent of the population is plausible.
Medical ignorance reflects a lack of research, and the lack of research reflects a lack of professional respect. Despite the devastating effects on those who have it – many sufferers spend years bedridden – most doctors and funding agencies did not take the disease seriously until recently.
Even now, research funding is scarce and many doctors tell sufferers that there is nothing fundamentally wrong with them. Their symptoms are dismissed as physical manifestations of psychological difficulties. The psychological reductionism is not only medically irresponsible. It also doesn’t make sense in the modern economy.
CFS is the sort of complicated condition that our high-tech, high-expense healthcare is supposed to address well, or at least make a serious effort to do so. More crassly, this is a reasonably common disease that attacks many people in the prime of life. That makes it expensive in terms of lost activity and the cost of caring. And it looks like a disease which can only be dealt with by long courses of expensive drugs – just what pharmaceutical companies crave.
Why isn’t the healthcare industry – the delivery system, the research complex and the profit-seekers – more interested?
One theory is that the disease is not quite awful enough to catch the public’s attention. It rarely kills directly and it comes with few symptoms that show up well in pictures. A related suggestion is that the right celebrity endorsement has not yet come along. Many patients and their advocates see a malign conspiracy, aiming to empower psychiatrists or reduce disability payments.
There is something in all these explanations. However, the most important reason that this physical condition was left so long to the psychological crowd is intellectual: it does not fit with the traditional model of infectious disease.
The model was articulated in its crude form by the German bacteriologist Robert Koch in 1883. The principle is simple: the body is made ill by the invasion of some pathogen, an outside organism which disrupts the natural functioning of one or more systems. In other words, for each ailment there is a single external cause which can be identified and isolated.
In theory, scientists have steadily retreated from this model of “me against the invader.” It turns out that many pathogens are present in small quantities in healthy bodies and that many otherwise healthy substances in the body can turn toxic. The biological interactions are delicate and multi-faceted. The organism rarely works perfectly, so the boundary between well and ill is often fuzzy.
The newer theory has not been well translated into practice. The old biological model persists because it works so well for most of the conditions that doctors know how to treat. It also suits the standard specialised research methodology. CFS, which crosses systems and appears to involve many tiny failures, simply does not fit the Koch model.
Fortunately, the situation is improving. There are some scientists taking an interest, even if they have to rely on crowdfunding. The leading researchers do see the disease as a complex and multi-system failure. Their work could lead to a medical, intellectual and economic triumph.
But the severe lack of mainstream financial support is holding them back. That makes no sense, even on the crassest and narrowest economic calculation. Treatments or vaccines for CFS are likely to turn out to cost less than the value of the labour that is currently lost to the disease. And such a narrow weighing of benefits and costs probably understates the upside. For one thing, there could be collateral economic gains if CFS research leads to a better understanding of other debilitating conditions.
There is also a less concrete but ultimately more important motivation. Knowledge is a human good, and one of the virtues of the modern industrial economy is that it has created and paid for much more of this good. A deeper understanding of chronic fatigue syndrome would almost certainly add ever more, by developing a better idea of how the human body functions. Even if no cure is found, the knowledge itself is a worthy economic goal.