No more Yuppie Flu!

This post is part of Blogging Against Disablism Day 2011.

I was originally inspired to write this post when I saw Eamonn Holmes’s bumbling performance while interviewing Kay Gilderdale, whose daughter Lynn committed suicide (with some help from her) after suffering from very severe ME for seventeen years, on ITV’s This Morning programme a couple of weeks ago. He got very basic facts wrong (such as saying that she got ill at age 17 — it was actually 14 — and that she went to Dignitas in Switzerland, when in fact she died at home in England) but had to drop the infamous phrase “yuppie flu” in, because no report about ME is apparently complete without it. The phrase makes another unwelcome appearance in a short article called “Sick and Tired” (part of a column called “The Sceptic”) in this week’s New Statesman. (It’s not online.)

The article’s basic premise, that ME patients should not take anti-retroviral drugs just in case the theory that the illness is caused by the XMRV retrovirus turns out to be true, is not unsound. What’s objectionable is how the article opens:

Yuppie flu, the psychosomatic excuse of indolent, mioddle-class skivers, or a real disease? Chronic fatigue syndrome, or myalgic encephalomyelitis (ME), continues to blight millions, but what is it?

It’s worth pointing out here that Kay Gilderdale defended Eamonn Holmes, through an intermediary on various ME-related Facebook fora, saying that Holmes “intended to point out that that was what it used to be called, but that things had moved on since then”, but that his co-host interrupted and the conversation changed course. However, an article on a scientific finding related to ME can still be opened with this crude either-or proposition — either it’s “yuppie flu” or it’s a real disease. It’s certainly true that the problems faced by ME sufferers are different to what they were in the early 1990s when the “yuppie flu” or “malingerer’s excuse” perception was widespread, but the media, who invented the term, continue to trot out “yuppie flu” time after time when discussing ME. The Daily Mail, when reporting on Lynn Gilderdale’s death, used the headline (for their online edition): “Mother arrested as ‘yuppie-flu’ daughter is found dead after 16 years in bed”. (The ME Association complained.) In the words of one of Lynn’s friends:

The article was about someone who had committed suicide because they’d been suffering for 17 years of hell with this condition, and in one idiot phrase, they basically make the whole thing sound completely trivial. It’s partly the reason this stigma is attached to us, and it tries to make us sound like we are just pretending.

It might be argued, of course, that influenza itself is potentially a devastating disease, that it kills elderly people every winter, and that it periodically visits devastating pandemics on the human race, as in 1918 and the avian flu pandemic that is supposed to break out of China any day now. Still, “yuppie flu” is much more “man flu” than “Spanish flu” (and even that term is inaccurate as the 1918 flu in fact originated in Kansas). It sounds like what people commonly use “flu” to mean, i.e. a bad cold, when really, if you can get out of bed for anything but the most essential things, you don’t actually have flu. It’s also true that one commonly reported symptom of ME is a “flu-like malaise”, but remember, that’s like the flu that stops you getting out of bed. Not man flu.

The term is not only trivialising; it is inaccurate, because ME can affect people of any social background and is not limited to burned-out high-flyers or “type A personalities”. It was invented in the 1980s at Newsweek, and perhaps caught on because people on low incomes in the USA generally cannot afford healthcare; the highest-profile outbreak happened in a wealthy resort town, Incline Village in Nevada. However, as Hilary Johnson noted in Osler’s Web, it also affected the poor rural town of Yerington, Nevada (and others elsewhere in the USA such as Lyndonville, New York), where people could not afford to go to the clinic and could in no sense afford to be ill. The illness also affects people far too young to have ever been yuppies, including teenagers and even young children. It doesn’t affect babies, but it’s been reported in children aged 3 and above.

The cases involving girls in their early teens getting dramatically ill and never being right again have been discussed here before (it was not just Lynn Gilderdale), but I know two women who have been affected since they were five and six. One of these I was talking to (online) and she said that most of her experience of ME has been the “severe kind”; she is currently bed-bound and mostly tube-fed, and I have seen videos of her suffering terrible body spasms. A better-known case is that of Emily Collingridge, who has been ill since age 6 (in 1987), who wrote a book on living with severe ME that was published last year. Since its publication, she has suffered a major relapse, and has told her story here.

I can’t think of any other disease which has such devastating consequences and yet which continues to attract this trivialising, insulting term. It is not as if the media are unaware that ME is an illness which results in young people becoming bedridden in dark rooms, often in terrible pain, along with spasms and cognitive disturbances, for years or decades — those who fell ill at the same time as Lynn Gilderdale are now entering their third decade of severe illness. There have been two serious high-profile cases in the last five years or so, with a few other heartbreaking stories (including fatalities) available to anyone who chooses to do some research. There is simply no excuse for journalists to be using this term whenever ME comes up in a story.

The use of pictures in some ME-related stories also backs up the “yuppie flu” perception even if the term is not used in the article. They often feature models in an affected sleepy state, sometimes a bit disshevelled, but invariably bathed in light, as is often the case with professional pictures. Not everyone with ME is extremely light sensitive, but many sufferers have some degree of sensitivity and most with severe ME have it quite badly. Recently, I read of an American ME sufferer who suddenly developed very severe light sensitivity, and had to wear a blackout mask when in the house, rendering her effectively blind (she later developed extreme sound sensitivity as well). Others can live in a gloomy environment and tolerate a bit of radio or music. Still, the lighting used in those pictures would make them wince in pain! The picture accompanying the Daily Mail’s report on the PACE trial is the worst example. There are, of course, plenty of pictures available of real ME sufferers, who don’t look like professional models even if they were before they fell ill. The pictures also give the wrong impression that the chief symptom is “being tired all the time” when it is not; pain, cognitive disturbance, paralysis and gastro-intestinal problems are also common and often more significant, and many sufferers say they do not actually feel tired.

The term also represents a past reality, in which there was a divide between those who believed and those who didn’t. Today, there are a number of in-betweeners, including those who claim that ME is physical in origin but perpetuated by psychological factors and those who advocate exercise therapy, apparently disregarding the fact that for many ME patients, graded exercise is extremely dangerous and has had well-documented adverse effects. There are also many doctors brought up on books that mention “chronic fatigue syndrome” in passing, and then only in the psychiatric section. Dr Nigel Speight, in his speech to the Invest in ME conference in 2007, said that the stock teaching book for paediatrics in the UK calls chronic fatigue syndome “one of the most common somatisation disorders of childhood” (a somatisation disorder is when psychological stress tells on the body with symptoms such as blindness or paralysis). I have spoken to some friends who are GPs personally (I am talking about Muslim doctors in and around London, although I don’t doubt the same is true in other communities), and one of them did not know what ME was (that was just after the Gilderdale case) and when I mentioned CFS, he told me of so many conditions that had to be ruled out (which, in fact, can exist alongside ME). In other words, they regard it as fatigue that persists for six months or more with no other explanation. The medical profession are still notoriously uneducated about the condition, and there are numerous horror stories about severely-affected ME sufferers going into hospital and coming out worse, in large part because of an inappropriate environment (noise, light, chemicals etc) but also because of dismissive and even cruel treatment (here is a recent example).

The media do know about the seriousness of ME. They do know about the cruelty some sufferers have experienced in hospital, because they have reported on it. They do know about the families being threatened with child protection proceedings because the parents do not play along with the doctors, because they have reported on it. They do know about the young people shut in dark rooms for years, because they have reported on it. They do know that people have died (and not only from suicide), because they have reported on it. Even if different newspapers have reported on different aspects, the same people often move from one paper or broadcaster to another, so they do know or they know people they can ask; it is a more closely-knit community than one might imagine. There is no excuse for them to continue presenting the outdated “yuppie flu” stereotype, something they do not do with any other illness that is anything like this serious.

This term is offensive to so many people as it trivialises a condition with very serious and difficult set of symptoms. Frankly, I cringed when I saw Eamonn Holmes use it on Kay Gilderdale. There are so many terms related to disablility that we no longer use because they have come to be seen as derogatory, even if they originally were not (like spastic and retarded) and the media would certainly not use them in headlines; “yuppie flu” always was derogatory, it bears no resemblance to reality, and its use ought to stop.

(More contributions: Claire Wade, Maija Haavisto. Non-ME: Ruth Madison, Writer in a Wheelchair, Perpetually Myself.)

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• Review: Unrest
• Charlie Gard and NHS versus private care
• Anti-vaxers, ME and desperate people
• Ed Balls