Heroes Not Zombies

It kind of annoys me how some illnesses are considered “real” and some not – fibromyalgia is one of those controversial disorders which some doctors dismiss as depression simply because the patient is down (who wouldn’t be with daily pain??) and because none of the tests show anything abnormal. It will probably turn out that this is one of those cases of looking in the wrong place. Because the pain is felt in the muscles, doctors have tended to look at the muscles. And they don’t find anything abnormal. So they look at the joints, or the tendons, ligaments and soft tissues around the joints. Nope, still don’t find anything wrong.
Well, here’s something interesting from France -a team of researchers have found consistent abnormalities in brain function in patients with fibromyalgia. Specifically, they’ve found abnormalities of function in distinct areas of the brain independent of the patient’s depression score. Here’s what they found –

The researchers confirmed that patients with the syndrome exhibited brain perfusion abnormalities in comparison to the healthy subjects. Further, these abnormalities were found to be directly correlated with the severity of the disease. An increase in perfusion (hyperperfusion) was found in that region of the brain known to discriminate pain intensity, and a decrease (hypoperfusion) was found within those areas thought to be involved in emotional responses to pain. In the past, some researchers have thought that the pain reported by fibromyalgia patients was the result of depression rather than symptoms of a disorder. “Interestingly, we found that these functional abnormalities were independent of anxiety and depression status,” Guedj said.

The authors go on to conclude –

“Fibromyalgia may be related to a global dysfunction of cerebral pain-processing,” Guedj added. “This study demonstrates that these patients exhibit modifications of brain perfusion not found in healthy subjects and reinforces the idea that fibromyalgia is a ‘real disease/disorder.'”

I do think this is good news. It means that doctors are beginning to discover something about what kind of disorder fibromyalgia is. But I do despair about this continued categorisation of disease into “real” or not. (with “not” usually being categorised as mental illness) Mental illnesses, such as depression, should be diagnosed in their own right, not as what’s left over after a battery of tests are returned with “normal” stamped on them!

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In an excellent article in the BMJ, Nicholas A Christakis, professor of medical sociology at Harvard, asks the questions all doctors (and their patients) should be asking. He points out that too often these days we misunderstand (or maybe misuse) the results from drug trials.

Doctors say that a drug “works” if, in comparison with the control arm of a clinical trial, significantly more people in the treatment arm respond. Unfortunately, this is a naive oversimplification, and it breeds complacency among patients and physicians alike

He points out that it is frequently the case that a drug which is shown in trials to help more patients than a placebo or other treatment, very often actually only delivers this benefit for the minority of patients who are actually prescribed it. I’ve quoted Dr Roses of GlaxoSKF a few times on that same point!

Countless drugs that have been shown in randomised controlled trials to be effective work in only a minority of patients. Imagine that a drug worked 20% of the time in a trial, compared with 5-10% for a placebo. This is the case for drugs ranging from antihypertensives to minoxidil to cancer chemotherapy. Such a difference in a trial corresponds to an enormous effect size. However, most patients taking such drugs would not benefit—they would hardly think that the drugs “worked.” If you buy a toaster you expect it to be able to toast bread every time it is used. If it does not, you say it does not work and return or discard it. You do not take solace from the claim that, in fact, 30% of the time in the manufacturer’s laboratory the toaster did a better job in browning bread than sunshine alone.

It does amaze me that certain treatments are labelled “proven” in this way. What’s even worse though is when the prescribing doctor then seems to blame the patient for their “failure” to respond to the treatment. This leads me on to the author’s recommendation –

one appropriate reaction is to have a protocol of administration that evaluates a patient’s response. Doctors sometimes already do this in a systematic way (such as when titrating the administration of highly active antiretroviral treatment). But this practice should be more widespread and more formal

Whilst I agree with this recommendation, it still does amaze me. Don’t all doctors routinely check how every individual patient is doing?

Anyway, here’s the take home message, in the last paragraph of the article –

Just because drugs work in trials does not mean they will work in our patients. In fact, we can often expect that they will not work at all.

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There’s quite a trend in recent years towards Public Health measures centred around what you might call “technical fixes” – the idea that a technology of some kind can improve health. The technology of choice, of course, is pharmacology and we are bombarded with messages that various different drugs should be taken by increasingly large proportions of the population in order to achieve greater Public Health. I think this is a myth. It’s part of the larger myth that science and technology will allow us to control Nature, to set out how we would like life to be and to achieve those goals. There’s an awful lot of sloppy thinking on this subject. Quite often we are told that a particular drug has the ability to be “life saving”. Drugs don’t save lives. At best they alter the death experience, but everybody dies from something and drugs actually don’t let you be sure that YOU, the individual YOU, can avoid a certain kind of death.

Take death from heart disease and strokes for example. We’ve been told that everyone should take aspirin because if everyone took aspirin then a lot less people would die from heart attacks or strokes. Listen carefully to that advice because it is a statistical statement – if MOST people took drug x then LESS people would die from y. That’s not the same as saying that if YOU took drug x then YOU would be less likely to die from y. The difference might seem subtle but it’s significant. The difference is ignored by people who suggest that we are all the same and we should all follow the same course of action. For example, a few years back some doctors and scientists promoted the idea of a “polypill” which every adult should take so that the death rate from certain diseases would be reduced. (what the authors didn’t seem to think about was what, if they were correct, would all these people die from instead? Don’t you think that matters?)

In this week’s BMJ there is an editorial summarising the studies of populations taking aspirin and their conclusions are clear.

These result support the concept that risk assessment alone cannot predict which patients will benefit from aspirin. In fact, the only predictor of clinical response to aspirin is a history of a major coronary or cerebral ischaemic event, as defined by the previous meta-analysis

In other words, there is only a statistical benefit from aspirin in patients who have already experienced coronary or cerebral ischaemic disease (that’s angina, heart attacks or strokes primarily). In the population who haven’t experienced one of these diseases there’s no benefit from taking aspirin.

Buried in the text of the article is this statement too –

However, not all patients with cardiovascular disease respond to aspirin, as shown by a recent meta-analysis of aspirin trials in peripheral artery disease

So beware of taking these messages at face value. It seems that only those who have already developed cardiovascular disease may be helped by taking aspirin and of these not all will get the benefit.

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I’ve wrestled with trying to understand what health is – in fact, I often challenge doctors I teach to come up with a definition of health which makes no reference to disease or illness. Sure, WHO’s definition does say that health is more than the “mere absence” of disease, but that still doesn’t quite capture it. I think the three qualities of adaptability, creativity and engagement are good ones to consider when grappling with this concept called health.

But there’s another word doing the rounds now – “wellness”. Was does “wellness” mean to you, and does it mean something that “health” doesn’t?

Whatever definitions you come up with, I bet it doesn’t include what I just read about a new technology – a test card which, using a single drop of saliva or blood, can check for the presence of a bank of diseases.

I’m sorry, but that’s a “sickness card” not a “wellness card”! Even if it could test against 20 diseases, it will only tell you that you don’t have one of those 20 diseases – and that does not make you “well”!

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Sir Michael Rawlins, Chair of the National Institute for Health and Clinical Excellence, has recently criticised our use of RCTs (Randomised Clinical Trials). This particular type of research study is promoted by many decision makers as a “gold standard” but Sir Michael listed a number of objections to this practice. He gave examples of situations where RCTs are either unneccessary or impossible, questioned the practice of failure to complete studies (30% of recent trials in oncology have been stopped early because of apparent benefit from the treatment), and expressed his concern about the high costs of conducting such research. However, perhaps his most interesting remarks related to the generalisability of RCT findings and the elevation of this methodology above others.

RCTs are often carried out on specific types of patients for a relatively short period of time, whereas in clinical practice the treatment will be used on a much greater variety of patients – often suffering from other medical conditions – and for much longer. There is a presumption that, in general, the benefits shown in an RCT can be extrapolated to a wide population; but there is abundant evidence to show that the harmfulness of an intervention is often missed in RCTs. Sir Michael argues that observational studies are also useful and, with care in the interpretation of the results, can provide an important source of evidence about both the benefits and harms of therapeutic interventions. These particularly include historical controlled trials and case-control studies but other forms of observational data can also reveal important issues. Sir Michael rejects the trend to grade various kinds of clinical trials and studies on scales of merit which he says has come to dominate the development of some aspects of clinical decision making. “Hierarchies attempt to replace judgement with an oversimplistic, pseudo-quantative, assessment of the quality of the available evidence.” Sir Michael believes that arguments about the relative importance of different kinds of evidence are an unnecessary distraction. What is needed instead is for “investigators to continue to develop and improve their methodologies; for decision makers to avoid adopting entrenched positions about the nature of evidence; and for both to accept that the interpretation of evidence requires judgement.

The generalisation issue has been raised so often it’s surprising that it is dismissed so easily by decision makers. Not only are trials artificially created clinical experiences but the entry and exclusion criteria for patients admitted to such trials always excludes “co-morbidity”. In other words if somebody had more than one clinical problem they won’t be admitted to the study. However, in actual clinical practice patients presenting with more than one disease at a time occurs so frequently that it is considered usual. Other criteria also make it difficult to generalise the results of RCTs. But, Sir Michael’s main criticism is about safety. The problems with a new drug are rarely picked up by RCTs. The problems indeed are not usually evident until many more patients have taken the drug in real life circumstances. So if we want to understand the real life potential of a drug, then we need larger, observational studies to pick up the side effects and harms which the drug can cause.

His final point is about the use of “hierarchies of evidence” which give greater credence to some methodologies over others. His contention that this distorts both the nature of evidence and that it is used as a substitute for clinical judgement is an important one

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I read some research recently linking low vitamin D levels to chronic pain in women. As the Scottish population is well known to be rather deficient in vitamin D (not enough sunlight, poor diet), and as I see a lot of patients with chronic pain, I’ve started sharing this research with female patients who have chronic pain. Already I’ve had back reports of quite dramatic reductions in pain levels in some of these patients. I hadn’t been aware of such a connection before but I had been aware that vitamin D insufficiency might be one of the factors behind the high levels of Multiple Sclerosis in Scotland. Well, it seems that vitamin D may have an even more extensive role to play in health than we realised

In a paper published in the August issue of the American Journal of Clinical Nutrition, Norman identifies vitamin D’s potential for contributions to good health in the adaptive and innate immune systems, the secretion and regulation of insulin by the pancreas, the heart and blood pressure regulation, muscle strength and brain activity. In addition, access to adequate amounts of vitamin D is believed to be beneficial towards reducing the risk of cancer. Norman also lists 36 organ tissues in the body whose cells respond biologically to vitamin D. The list includes bone marrow, breast, colon, intestine, kidney, lung, prostate, retina, skin, stomach and the uterus. According to Norman, deficiency of vitamin D can impact all 36 organs. Already, vitamin D deficiency is associated with muscle strength decrease, high risk for falls, and increased risk for colorectal, prostate and breast and other major cancers.

This research group is recommending that people take 2000 international units of vitamin D a day. This is considerably higher than other recommendations which range from 200 to 400 units depending on age (older people need more). It is possible to take too much vitamin D and be harmed by it but this is unlikely at doses under 10,000 units daily so the 2,000 units recommendation is well within safety limits.

This seems to be a developing story, but I think we’re going to see more attention being paid to this somewhat neglected vitamin!

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On the BBC site there is a fascinating story. Cyril Merle, aged 86, suffered a massive stroke just four days after his wife’s funeral. Now aged 91, he has not only recovered but he is able to do more than he could before his stroke. He credits his love of music as being the main reason for his remarkable recovery.

He didn’t just listen to music, but music became a motivator and a framework for his action. He took up “tea dancing” (this was a very popular tradition in England years ago where couples would enjoy afternoon tea and a dance to a live band) and playing the keyboards (having not played for 30 years). Despite his wife having described him in the past as a “rotten dancer” he says he can now dance better than he can walk and he regularly plays for community sing-songs in the residential home where he lives.

I think there are a number of interesting aspects to this story. Firstly, it does remind me of Edwyn Collin’s story, which is also a remarkable story of stroke recovery involving music. Secondly, right at the beginning of this story is the fact that this man’s stroke occurred within 4 days of his wife’s funeral. A powerful example of the strong psychological, emotional and social determinants of disease. We will never understand illness or health if we think of them in strictly physical/material terms. Thirdly, all three characteristics of health are present in this story. This man suffered a significant incapacitating event, but he adapted. He coped. He survived. But he didn’t just adapt, he grew. Through creative expression of dance and playing a musical instrument he enlarged his life. He developed. In fact, he developed to a point beyond the one he’d reached before his stroke. Finally, he was engaged with life and his community. Tea dances in particular are fundamentally social affairs and he didn’t just play his keyboards for his own enjoyment, he used his new skills to entertain and encourage others in the home where he lives.

What a great story!

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I never go to see a doctor. Unless I have to. I’m guessing most people feel the same way. So when you do feel you have to visit a doctor, how do you get the most out of your visit? There are many ways to consider that question but I want to share three small drawings with you here. You might want to use one or more of them next time you go to see a doctor.

If you’re going to see the doctor because you feel something is wrong, then it’s pretty likely your first goal is to find out what the problem is. In medical terms, that’s a diagnosis, but in more general terms, it’s an understanding. You want to understand what’s going on. The point of asking the doctor is that doctors are well trained in doing exactly that – they are specialists in making diagnoses. At best, they specialise in understanding people and understanding peoples’ experiences. But you don’t just want a label for your condition. It’s not like naming flowers or trees. You want to know what that’s likely to mean and whether or not you should do anything about it. Here’s the first drawing –

The question is “Do I need to do anything?”

You can figure that out by asking your doctor first of all how serious this problem is…..in other words “how much of a threat does this pose to me?” If the pain you are experiencing is likely to be a pulled muscle, the threat level is low. If it’s angina (heart pain), it could be pretty high. So where, along the left to right axis of this drawing would you place the threat level? Second, how rapidly is this likely to get worse? This determines the urgency of action. If the condition you’ve got changes over minutes, something needs to be done right now. If it changes only over many years, you can take your time and consider what to do about it.

Having understood this, you and your doctor will be thinking about possible treatments. Before you leap into any treatments however, maybe you should consider whether or not ANY treatments are necessary. This second drawing might help you figure this out.

The question is “How much of a problem is this for me?” And the answer to that depends on how much you are suffering. There are at least these two aspects of suffering – restriction and distress. Health is a kind of flow experience. When things are flowing you’re pretty much unaware you even have a body. When something’s wrong, there’s usually disruption of flow. You get stuck, or inhibited by pain or stiffness or weakness or something. The more you feel restricted, the less able you are to live your life. So, it’s worth thinking where you’d place the degree of restriction you are experiencing on the axis from left to right. How much is this suffering inhibiting, preventing, impeding my life? That restriction contributes to the amount of distress you are feeling but I think distress is more than that and you should consider it as a separate aspect. How great is your distress? The more you plot yourself up and to the right of this little chart, the greater the suffering you are experiencing, and the more important it is to you to do something about it to change the quality of your life.

We don’t just visit doctors for an understanding though. We are probably seeking change. We’d like something to be better. So the second main priority of the doctor is to consider which treatments to offer. This isn’t as straightforward as it might appear and the doctor can’t decide this all by himself (or herself). That’s because different treatments will be best for different people with the same problems.

Most treatments offered are drugs or surgery. All drugs and all surgical interventions carry risks of harm. So here’s my third drawing to help you work out which treatment you’d like to try.

The focus here is on harm. The old adage “First do no harm” is still of great relevance to the practice of medicine. It’s unlikely your doctor will offer a treatment unless he or she believes that treatment has the potential to help you. Doctors use both clinical epidemiology (“Evidence Based Medicine”), their knowledge of YOU and your condition, and their own clinical experience to work out what treatment to offer you. But it’s always worth considering the aspect of harm. First of all, what potential has this treatment to harm? Has it ever killed anyone? How seriously can it do damage? Secondly, what’s the chances of that harm occurring? That is what is the risk – to me – of that harm?

Having considered all of these issues there’s still a lot to decide and it’s still the very beginning of a journey for you. A good working relationship with a doctor is a continuing conversation. It’s not an event, or just a series of events. As things move on and change you’ll be in continuing conversation with your doctor and both understandings and treatments will change as a result.

I hope you find these helpful.

What about you? Have you found any ways to make a doctor visit more successful for yourself?

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