Heroes Not Zombies

I see a lot of patients with the diagnosis of “Chronic Fatigue Syndrome” or “ME”. I probably see a lot of them because most the health service doesn’t quite know what to do with them and, like most patients who come to Glasgow Homeopathic Hospital, everything else they’ve been prescribed hasn’t worked for them.

However, it’s a hugely contentious illness. Some people don’t even believe it exists. Others dismiss it as a psychological problem at best and a frank psychiatric problem at worst. Why is that? Well, the key reason is there isn’t a test for it. The biomedical model of illness recognises problems with objective, measurable “abnormalities” – preferably in some tissue somewhere. It’s actually a rather old-fashioned way of thinking about illness – as if it’s an entity which can be observed, measured, then expelled or conquered; an entity which is some kind of alien presence in the human body. Modern, complexity science has shown us that illness is about maladaptation or malfunction somewhere within the complex, and that measurable, objective pathologies are more often the results not the causes of illness. Beware the doctor who names your illness with the word “syndrome” attached – chronic fatigue syndrome, irritable bowel syndrome, irritable bladder syndrome, premenstrual syndrome, idiopathic urticarial syndrome – if it’s called a syndrome, you can be pretty sure medical science doesn’t really understand it.

If there’s nothing measurable, the physicalists tend to prefer to conclude “there’s nothing wrong”. But when a person is incapacitated by pain, fatigue and other symptoms there is certainly something wrong! To assume that must be a mental problem is very wrong-headed and often ostracises and stigmatises the sufferer.

For those who can’t quite manage to believe the stories patients tell, there is some hope. Scientists claim to have identified seven genetic types of ME. Each type (genetic pattern) seems to be related to a particular pattern of ME symptoms –

Type one had the worst anxiety and depression levels, along with poor sleep and high pain levels. Type two was characterised by significant post-exercise fatigue and joint and muscle pains, while type three was the mildest form of the disease. The research identified type four as linked to moderate levels of body pain and sleep problems, with type five having stomach complaints and the most marked muscle weakness. Type six was specifically connected to fatigue, and type seven had the most severe symptoms including pain, swollen glands and headaches. Type four and type six were the most common forms of the condition.

I think it’s a shame that “tests” are considered more reliable indicators of illness than patients’ narratives, but I do think if these patterns are confirmed, and IF (big if here), that can be turned into a test, then maybe some patients with one of these syndromes will at last be taken seriously.

However, the fact that the researchers have identified six different types confirms a suspicion I have. Most “syndromes” are at best a mixed bag, and, at worst, a kind of dumping ground for a wide range of disorders which happen to share some common features. I don’t think we’ll ever find a “thing” or an “entity” called “chronic fatigue syndrome”. However, we might find a whole set of disorders which currently sit under the same label.

One paper I read a while back about disorders like chronic fatigue, fibromyalgia and irritable bowel syndrome demonstrated the amount of overlap which existed between these illnesses and posited the idea that underlying all these disorders is a more fundamental problem – a dysfunction of the complex adaptive system. This is the explanation I understand best – these disorders seem to be disorders of the whole organism. They aren’t disorders of bits of people, they are disorders of the way the organism functions as a whole complex system.

By coincidence, today, the Guardian published a first person account of chronic fatigue syndrome. Have a read. It’s a clearly written account and it highlights many of the common things patients say about their illness. I know some people will read that account and dismiss it in a way they would not dismiss a patient’s account of cancer. And that’s just one of the problems these patients have to face. In the hierarchy of diseases, ones without abnormal test results rank pretty low! That strikes me as neither rational, nor reasonable.

Today’s BMJ carries three articles about the placebo effect.

Firstly, in an Editorial by Spiegel and Harrington, they discuss a paper published by Ted Kaptchuk and colleagues where patients with Irritable Bowel Syndrome were randomised into three groups – those who were simply observed, those who were given sham acupuncture, and those who were given sham acupuncture with an enhanced doctor-patient relationship. 3% of the first group got good improvements, 20% of the procedure alone group an 37% of the “augmented intervention group”. As the authors point out,

the doctor-patient relationship in the sham acupuncture only group sounds like a caricature of procedure based medicine practised under strict time limitations:the practitioners explained that this was “a scientific study” and they had been instructed not to talk about it with patients.

and

Clearly the group with the greatest relief of symptoms was the one that received not only sham acupuncture but 45 minutes of quality contact with a clinician. This contact involved questions about the patient’s symptoms and beliefs about them, a “warm, friendly manner,” empathy, and communication of confidence and positive expectations

This is a powerful argument for practising medicine with care and attention. As the authors say –

Perhaps the ratcheting down of the time that doctors spend with patients and our modern overemphasis on drugs and procedures is “penny wise and pound foolish.” Patients might respond better to real as well as placebo interventions if they were associated with a good doctor-patient relationship. Although the increased time and concern may enhance the effects of the placebo, it also changes the context of associations with the treatment—the doctor may enhance the effect of the sham needle, but the needle also becomes a reminder of the enriched relationship.

Here’s their “take home message”

We treat patients in a social and psychophysiological context that can either improve or, alas, worsen outcome. The meanings and expectations created by the interactions of doctors and patients matter physically, not just subjectively.

Human beings cannot be reduced to mere physical components. We are thinking, feeling, meaning-seeking creatures. Health care should be founded on that understanding.

Then, in a reflective article, Pittrof and Rubenstein, consider the ethics of using placebo. They make the point that randomised clinical trials of drugs vs placebo show real effects in the placebo groups –

Published evidence only applies to patients if they have similar characteristics to patients in the study population. Even if this is the case, their response can rarely be accurately predicted. This is one of the problems with evidence based medicine: often its application to the individual is under less than ideal conditions. However, where the study shows that placebo results in a response, when compared with baseline, then that is precisely what the study shows. It is possible to state with confidence that, were the conditions of treatment to be replicated as in the study, the patient would have a statistical likelihood of responding to the placebo, just as we can say that the patient is statistically likely to respond to the active intervention. There is thus a response whose cause is debatable but the response is genuine. On strictly scientific grounds no deception would be involved in referring to this response as an evidence base.

They also point out that full disclosure of information to patients should include a discussion of potential harms –

For example, when advising a patient about treatment for mild to moderate depression clinicians might explain that use of SSRIs may be associated with a higher risk of suicide attempts and that about 80% of the benefits of SSRIs might be attributable to a placebo effect.

and go on to say

we have seen many risk averse patients who would happily accept reduced benefits for much reduced risks.

In other words, if you were told that a treatment had a chance of helping but hardly any chance of harming you, would you choose it first over a treatment that had a greater chance of doing both – helping and harming?

The Royal College of Nursing in the UK has published shocking results of a survey of its members. They asked nurses about their experience of patients being treated with dignity in hospitals.

In total, 81% of those quizzed said they sometimes or always left their workplace feeling distressed or upset because they had not been able to give patients the kind of dignified care that they should. And 86% said dignity should be a higher priority.

This is quite stunning. Over eighty per cent of nurses claiming this means that not only are patients routinely NOT treated with dignity while they are in hospital but that most nurses are aware that this is a problem. One nurse said this –

“Patients seem to be becoming numbers not people. I am having to fight against what the system wants in order to provide dignified care to my patients.”

There is something seriously wrong at the heart of the NHS – staff need to speak up and express their concerns loudly and clearly. A health service is for the treatment of people – people at their most vulnerable. Its’ priorities should be PEOPLE – patients and staff – not those other artificially created targets and priorities, set so often by people who have no involvement in day to day care of patients.