Guardian on ME and retroviruses, and other press coverage

First of all, this past week has been ME Awareness Week as I mentioned several times in my last article. This fact has got lost in all the election talk as might have been expected, although I’m sure many in the ME community found that disappointing, but nonetheless some media outlets found space to cover the subject. This didn’t include any of the “quality” dailies except for the Guardian, but did include a lot of local newspapers:

The biggest article, however, was in yesterday’s Guardian and preceded Emily Levick’s first-person account. There are a whole host of problems with the article, among them that it portrays the debate over ME in the UK as being between a bunch of internet conspiracy theorists and the medical establishment, and that it overplays the significance of recent American research into the possibility of ME being caused by a retrovirus (HIV is a retrovirus) and completely ignores evidence of another type of virus which has been implicated in causing ME.

In the second paragraph, the author says that ME stands for “myalgic encephalopathy”, which is a heavily disputed recently-coined name for the condition. Historically it was called myalgic encephalomyelitis, meaning inflammation of the brain and spinal cord, and this is the term which has been recognised by the WHO and is backed up by, among other things, autopsy findings from people who have died of or with ME, among them Sophia Mirza and Lynn Gilderdale. According to Jane Colby of the Young ME Sufferers’ Trust:

The aim - for medical professionals to accept the term ME - hasn’t worked. Most doctors still use the unsatisfactory and hopelessly muddled name ‘chronic fatigue syndrome’. The only outcome has been to downgrade ME.

Where ‘opathy’ just means that something’s wrong, ‘itis’ specifies inflammation, which is typically caused by infection. The word ‘Encephalomyelitis’ means ‘inflammation of the brain and spinal column’. The ‘opathy’ dogma has now got into ME literature for schools. Denial of inflammation flies in the face of the symptoms and the work of those who first coined ‘ME’. Thank goodness polio myelitis was not called ‘chronic weakness syndrome’.

Research such as Spinal Fluid Abnormalities in Patients with Chronic Fatigue Syndrome by Natelson et al shows that something nasty has indeed occurred. Along with Professor Malcolm Hooper, Dr Byron Hyde, Dr Elizabeth Dowsett, the late Dr Richardson and others, I consider that the original name is correct, as case records and other evidence indicates. (Tymes Trust, The Brief, issue 6, 2006; PDF here)

What to call ME is related to what type of virus causes it. The virus that caused polio was known as an enterovirus, or gut virus, and given that ME causes a similar kind of paralysis to polio, that cases of ME took off after polio was eliminated through vaccinations, and that people affected by outbreaks of ME were generally unaffected by subsequent outbreaks of polio, it seems quite logical that ME and polio are related. It also casts doubt on the relevance of the research into the XMRV retrovirus, on which much of the ME community has pinned so much hope. An article published in the Tymes Trust magazine, Vision, last year explains why there is much doubt over XMRV:

At the moment, it seems unlikely to us that XMRV is the cause of classic ME. One reason is to do with the behaviour, or epidemiology, of ME, which appears in clusters and epidemics.

There are a number of considerations. For example: If the XMRV retrovirus (like the HIV retrovirus which cases AIDS) is passed from person to person in blood and other bodily fluids (though not saliva or phlegm) then it would not adequately account for school and community epidemics of ME; secondly, the XMRV retrovirus has also been discovered in men with prostate cancer.

It is possible that people who already have ME or prostate cancer (or maybe another disease) have the XMRV retrovirus as well, because their immune systems are overloaded by fighting several things at a time. It is also possible that this could happen the other way round, with the XMRV retrovirus interfering with immune function, so other illnesses such as ME can develop because the body doesn’t fight infections as efficiently as it might. Too little is known as yet, and no tests are yet available for XMRV in the normal clinical setting.

We still take the view of the ME experts like microbiologist Dr Elizabeth Dowsett, who maintain that classic ME is, and always was, an enteroviral disease (bowel virus) which the recent work of Dr John Chia in California would support. Whether XMRV is a second player in this scenario, future research will hopefully clarify. (Tymes Trust, Vision, 2009 edition 3; PDF here)

The Guardian’s article makes the big mistake of assuming that scepticism about XMRV comes solely from those who regard ME as a primarily psychological condition, and that the reaction to European studies which drew a blank on identifying XMRV in “chronic fatigue syndrome” patients was hostile principally because Simon Wessely, notorious for propounding psychological theories about the causes of ME, was involved in one of them. It is not just those who insist on a psychological explanation who reject XMRV, but those who believe another type of virus causes it. In addition, they then overestimate the public health significance of XMRV, as in this paragraph:

But there was also a major public health issue here. HIV is a retrovirus. A retrovirus can be passed from one person to another in blood and semen. If XMRV, first associated with prostate cancer, is truly linked to ME/CFS, then we need to know about it fast, to prevent it spreading.

It is only recently, for example, that some countries have banned people with ME from giving blood, as a result of this interest in XMRV. But hold on a minute. Surely nobody with a seriously debilitating disease should be giving blood anyway, for their own sake regardless of any public health implications (a fair number would not be able to make it to the blood donation centre anyway, or to justify the journey even if they just about could). The public health hazard of HIV comes largely from the fact that there is a long asymptomatic period before the patient develops full-blown AIDS, during which they are free to share their bodily fluids with however many sexual partners they like, and donate what they think is healthy blood. HIV does not spread when people are simply in close proximity to each other, while there is evidence that ME does. The incubation period is much shorter and the onset is far more acute. We cannot protect the public from ME the same way we protect people from AIDS as they are totally different.

There are so many other problems with the article, among them that it fails to take into account why patient groups are dissatisfied with the emphasis on exercise therapy and CBT in the government guidelines, namely because numerous ME patients have had their health ruined by over-exertion, often on the basis of wrong medical advice. There is much evidence that CBT is ineffective in treating the physical symptoms (although some patients say it helped them cope better) and that GET is usually harmful (they refer to a paper published in the British Medical Journal this past February, and although the article itself is paywalled, you can find numerous responses to it, some with references). There is also the issue of why a psychiatrist, Simon Wessely, is so deeply involved in the treatment of patients with a disabling neurological illness, regardless of his history. And it’s not just people denied state benefits; it’s a whole history of mistreatment and abuse of seriously ill people, including children, sometimes to the extent that they became terribly sick and disabled and remained that way for life.

For such a hugely long article, this article leaves out a huge amount. It seems no real attempt was made to contact any of the ME advocates who are most hostile to Wessely, and while some of them are either too ill to conduct interviews or too busy caring for severely ill children or spouses, not all are, and most of them are not your stereotypical online conspiracy theorists either (of course, mentioning the Internet and conspiracy theories in the same breath is enough to make anyone suspicious). It overplays one aspect of research into the causes of ME and completely leaves out another, stronger one. Finally, they recurrently use the term “chronic fatigue syndrome”, a term many patients and advocates despise as it makes it sound like they are just tired all the time. The online edition (but not the print edition) of Emily Levick’s article, for example, is headlined “Living with chronic fatigue syndrome”, a term the author never uses (she confirmed this to me) as she regards it as misleading. Let’s see if any of the letters or corrections that were sent in get printed.

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