When studies contradict science
When the findings of an authoritative scientific study into the efficacy of some treatment appear to be contrary to the experience of at least some of those taking it, which is likely to be the more reliable?
A couple of years ago, prominent researchers involved in a major clinical trial claimed to have demonstrated that a combination of psychological therapy and graded exercise was of significant benefit in two thirds of those debilitated by chronic fatigue syndrome (CFS). This prompted a barrage of criticism from more than a thousand Daily Telegraph readers, who pointed out, inter alia, that exacerbation of fatigue on exertion is a defining feature of the condition and disputed the criteria in the trial for functional improvement.
Their scepticism is amply vindicated by the publication a fortnight ago in the journal BMC
Psychology of an independent re-analysis of the results that shows, on the contrary, these treatments confer “no long-standing benefit at all”. Meanwhile, the supposition the trial was intended to prove – that CFS (also known as myalgic encephalomyelitis, or ME) is primarily a psychological condition – has been undermined by convincing evidence that patients have impaired functioning of the autonomic nervous system in response to “physical and cognitive challenges”.
This dissonance between the scientifically sanctioned version of the truth and people’s subjective experience is apparent too in the vexed issue of the adverse effects of immunising young girls against the human papilloma virus (HPV) in anticipation this will reduce their subsequent risk of developing cervical cancer.
The background here is the development 20 years ago of a novel method for testing for HPV that found the virus to be present in cancer cells. This cannot, however, be the whole story as HPV infection is very common, usually resolving spontaneously, and the virus is not universally found in those with cervical cancer.
None the less, the prospect that it might be preventable in this way seemed a major breakthrough, and over the past few years, many countries have instituted a programme of mass immunisation of one or other of the (very costly) vaccines Cervarix or Gardasil. There is no doubt they work in protecting young girls against the virus, though there is as yet no evidence this has reduced the incidence of cervical cancer.
The safety of the vaccine is obviously of paramount importance. It may cause a local reaction at the injection site, and transient symptoms of fever, headache and so on, but a study in Denmark of nearly one million girls has shown that those receiving the vaccine do not suffer any long-term adverse effects.
Reassuring, certainly – but, rare as it may be, some parents maintain the vaccine is responsible for inducing in their previously healthy daughters a spectrum of persistent disabling symptoms, including chronic pain, impaired concentration and exercise tolerance and recurrent syncope. They are the subject of Sacrificial Virgins, a recent award-winning documentary in which, as with chronic fatigue syndrome, parents report being told their child’s symptoms are “psychological”.
This is most unlikely – and, indeed, four recent studies from Canada, Denmark, Italy and Colombia now confirm that, as with CFS, these girls have disturbed functioning of the autonomic nervous system.
The European Medicines Agency and similar bodies assert there is no “causal link” to the vaccine, but parents, before giving their informed consent, should check out the documentary, available to view on Youtube; by Google-searching for “severe dysautonomic syndromes after HPV vaccination”; or at vimeo.com/234652898.
Masking the problem
The plight of a woman afflicted with periodic bouts of excruciating pain and watering of either the left or right eye has elicited two different types of explanation. Several readers report similar symptoms with raised pressure (glaucoma), or inflammation of the iris (iritis) within the eyeball.
The general consensus, however, is that this is a cluster headache, whose searing, knifelike pain in and around the eye is reputedly the worst imaginable. It shares some features in common with migraine, but is characteristically (if surprisingly) much improved by inhaling oxygen through a mask.
Exercise has been proven to have no real benefit to sufferers of CFS