ME or CFS: that is the question
FoodsMatter carries three of her articles on the subject: Classic ME: the basics which defines ME; this one, ME or CFS, that is the question which explores the differences between the two conditions, and ME: Chronic Fatigue Syndrome or a distinct clinical entity, a fully referenced academic paper from which the two articles are drawn.
The term chronic fatigue syndrome (CFS) was introduced in 1988 as a result of a number of factors. Following four outbreaks in the USA during the mid-eighties, a committee dominated by individuals who had not read or recalled the older literature and didn’t believe that ME was the cause of the illness, was asked to advise the CDC, the government agency that investigates epidemics and new diseases. The views of the two ME specialists who attended that meeting warned that the emphasis on fatigue would result in confusion and as history has shown, they were right.
Read about CFS in any medical journal today and you’re unlikely to find references to weakness after minimal exertion and the delayed recovery of muscle power. This is the key feature of ME. Absolute exhaustion has become ‘fatigue’ and writers rarely acknowledge the findings supporting the views of the patient groups, let alone the experts with years of experience.
It’s my contention that CFS is not only different from ME but that it’s also an unhelpful term. In 1994, the diagnostic criteria for CFS were changed to ones that are almost identical to those for a psychiatric disorder known as neurasthenia. Indeed, a study found that 97% of the people who fulfilled the criteria for the latter also met those for the former. It goes without saying that the meeting in 1994 did not invite a single ME specialist. Moreover, a colleague who evaluated the latest set of criteria, published in 2005, found that it was partly based on errors. To put it another way, the controversy surrounding CFS is not limited to the UK, let alone a result of lobby groups wishing to keep the term ME and avoid the stigma of mental illness. It reflects the acceptance of poor science and the intolerance for different views.
CFS is not only hard to differentiate from neurasthenia, the current guidelines cover a multitude of ills. At this time, the criteria require the presence of chronic fatigue and four other symptoms from a list of eight. These include headaches, difficulties with concentration, insomnia and aches and pains. None are unique to CFS. When the criteria were tested, one third of the patients were found to have major depressive disorder, i.e. they had been misdiagnosed. Research also identified a subset which had low vitamin D and people experiencing the long term effects of trauma and abuse. Are all those individuals helped by having the same diagnosis for their symptoms? Since 1994, CFS has become an umbrella term and that has limited the treatments available on the NHS. Given that most of the published controlled trials have assessed psychiatric interventions such as cognitive behaviour therapy (CBT), and as the majority of these have reported some reduction in fatigue, patients with ME can expect to be offered a programme designed for people with chronic tiredness due to stress, depression and a host of other causes of headaches, pain and disturbed sleep.
If this – one-size-fits-all – approach had led to real and lasting improvements, no one would object to CBT. However, one study which used criteria similar to those for ME found no difference between this therapy and usual medical care. “Ah”, said the psychiatrists. “That was because they didn’t complete enough sessions.” The explanation that success requires more than 8 hours of treatment was accepted until I pointed out that until now, the best results have been obtained from a telephone-based programme lasting only three hours. What’s more, a follow-up of a well-designed trial of CBT revealed that fatigue had increased when measured five years after treatment. And that was even though a significant number of patients had continued to have CBT. So is this really an intervention worth spending millions of pounds on?
The sufferers’ attitude towards CBT does not reflect prejudice against psychiatric treatments but the fact that there has not been a single trial showing that it is helpful for patients with ME. There are no data on the effects of this therapy on neurological symptoms, and no evidence that most patients are well enough to return to work. All we can deduce is that CBT reduces fatigue to a degree and sometimes, that the effect is temporary. Many report that they feel ‘better’ but if you had previously spent 24 hours in bed and after attention from an empathetic person, you now spend 23 hours in bed, would you tick the box marked ‘I feel worse’? Asking patients if they feel better is rather meaningless when the only symptom assessed tends to be fatigue. It’s like cancer. If you focus on the primary tumour and find it has shrunk but you ignore the secondaries, or the fact that the patient is still feeling unwell, can you conclude that the treatment is effective?
One can’t generalise from one illness to another unless you have the evidence that any differences are of no clinical significance. With one-third of people with CFS having major depression and some having low levels of vitamin D, to name just a few subsets, a one-therapy-for-all approach is inappropriate and almost certainly a waste of time and funds.
I could write a book on the differences between ME and CFS or ME and psychological disorders. Longitudinal studies have shown that when people first get ME, they are no different from other individuals. They don’t have a different personality, a different immune system (as far as it has been tested) or anything else except that the individuals who recover within six months were less severely affected at onset compared to those who remained ill.
I’m not surprised that some patients with ME are depressed. Clinical depression is also common in people with diseases such as cancer and MS. It doesn’t mean that ME is a depressive disorder. The latter does not occur in epidemics. The likeliest explanation is that depression is a result, not a cause, of ME. If you feel dreadful but your GP tells you that you’re using illness as an excuse to escape the rat race, would you feel happy? If one needs an excuse to escape the rat race, who would choose such a contested illness as ME? Or as one expert noted, patients wouldn’t spend thousands of pounds on private treatments in the hope of recovery if all they wish is to relax at home.
The bottom line is this: the assumption that ME is an old term for CFS is merely that: an assumption. Psychologists have just begun to test it and so far, they have found differences. For example, ME patients report more neurological symptoms. That is consistent with the old literature but if your GP isn’t aware of it, it’s not because he hasn’t read the mainstream journals. The BMJ and Lancet don’t publish articles on ME anymore or even allude to studies that question the assumption that ME and CFS are the same.
The ME patient not only has the lack of knowledge to contend with, but a medical fashion. Spin doctors. Those who promote CBT and graded exercise therapy (GET) posit that one can distinguish between a trigger (e.g. virus) and perpetuating factors (e.g., a mistaken belief that the virus is still around). The fatigue is attributed to a lack of fitness as patients rest in the knowledge that this helps alleviate many of their symptoms. Both CBT and GET try to persuade patients that their condition is not a result of ongoing disease. Other symptoms may be explained in terms of stress. However, given what we know, patients who believe that the pathogen is still present may well be right.
As a psychologist, I know that CBT is of great value if you can’t cope with illness and it causes significant anxiety or depression. But it’s not a treatment for the core symptoms of ME. All patients benefit from support, but the therapies offered to patients with CFS tend to be aimed at increasing activity levels, and if there is a pathogen in tissues, it’s unsafe. The same goes for GET. Interestingly, the evidence that GET improves fitness is limited and while fatigue scores do show some improvement, there has been no study which has focused solely on people with ME. Thus the objective scientist cannot conclude that GET helps ME, only CFS. Moreover, the effect of the therapy is not impressive. On one measure of illness, the average score from people with CFS after treatment was 59, which is normal if one is 75 years old, but way below the normal range for those aged 30 or 40. A scientist would also wish to examine the data from motion-sensing devices such as sophisticated pedometers, to confirm that the patient had followed the programme and kept to the schedule. So far, the literature indicates that except for 7 patients from the Netherlands, the scores from objective measures have shown no significant change in activity levels after treatment. Thus, if people feel better, we can’t attribute it to either improved fitness, or to graded exercise. To put it another way, if GET helps, we don’t who benefits or why.
On the basis that even minor exertion increases symptoms, I devised a very simple guideline: listen to your body, be aware of the cues that you have reached your limits, stop what you are doing and rest. I called it pacing. It seemed like common sense and studies have shown that it helps reduce the activity-related increases in symptoms. But it’s not a cure and all it does is to stabilise the condition. In scientific terms, the strategy is called symptom-contingent pacing. You do as much as you can based on how you feel, and the aim is to organise your life so that what your activities on one day will not increase your symptoms during the next five days. It is supported by evidence of the post-exertional changes in immune and muscle function plus abnormalities in blood flow to the brain etc. As science evolves, new versions of pacing have appeared. There’s time-contingent pacing, where patients are instructed to plan their activities based on time, e.g., to clean for 15 minutes and follow that with 15 minutes of rest. I don’t know of any study showing that time-contingent pacing is superior to my symptom-contingent version but from experience, I believe that the former is more helpful for work involving a lot of concentration. It’s much harder to tell when you’ve reached your limits when it comes to filling in forms and searching for something on the internet so I recommend a kitchen timer to limit oneself to 15 minute bouts. Once you begin to feel unwell and dizzy, it’s too late and you’re forced to stop.
As well as pacing, a healthy diet (low on sugar and gluten) can also help reduce some of the symptoms. And avoiding stress is always a good idea whatever disease you’re suffering from. However, the therapist must understand your problems. If you have ME and someone recommends gently increasing activity levels because the virus has gone, be cautious. Have the necessary tests been done?
At the moment, experts are still trying to get a better picture of ME and its relationship to CFS. That’s why some articles refer to CFS/ME or ME/CFS. There are criteria where pain is listed as a must-have symptom, but the danger is that this ticks a box which is not unique to ME. We still have to reach a consensus about the core symptoms that must be present, and the basic tests needed to support the diagnosis. Until then, CFS remains a dustbin diagnosis for a host of ills, and the tendency will be to promote explanations relating to stress, a poor diet, fear of fatigue and my favourite ‘you read about it on the net and then develop it’. It’s funny but perhaps only if you know the research and the fact that a similar condition has been described in pets, horses and cows. I can see those horses googling away before my eyes. Admittedly, animals can’t describe their symptoms; they just don’t move or behave as they normally do, but scientists have done brain biopsies and vets have tested for enteroviruses. If they hadn’t found anything, I might have accepted that ME is the old name for CFS, had an easier ride, and I certainly wouldn’t have written this article. But I can’t ignore findings just because others do.
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