Which of these women looks sick?

ButYouDontLookSick.com is a website by a woman with lupus (she wrote the Spoon Theory I referred to in a previous post). In her biography, she says that, despite suffering a wide range of symptoms over the years, she had been told by “well-wishers and doctors alike”, “but you don’t look sick”. The story I saw in the Independent yesterday, about a block on a study which shows a link between a virus called XMRV and the illness ME, gives a whole new meaning to that phrase.

Picture of sleepy female model, used to illustrate Independent's story on XMRVThe story was illustrated with a picture of a model someone said might have been advertising pillows — she was acting tired or sleepy. Although her hair is a mess, she is clearly well-made up and, as with professionally posed photos generally, she is bathed in light. They could have used one of any number of stock pictures of real ME sufferers and they don’t look glamorous, like that woman — they often really do look sick, as well as drawn and miserable. Many of them also say they don’t feel tired, or have never felt tired as they previously knew it since they got ill; they feel flu-like or poisoned, are in pain, have messed-up sleep patterns and cognitive difficulties. A lot of them find that light hurts their eyes, so the lighting in that picture would have been out of the question.

Picture of Lynn Gilderdale, a real ME sufferer, with feeding tube and Hickman lines on displayQuite apart from that, the headline, “Study that ‘solves’ chronic fatigue syndrome blocked”, is inaccurate. There is a myth that has been repeated quite a lot in ME literature lately, that the discovery of the XMRV virus “finally proves” that it wasn’t all in their heads all along, and that there really is a physical cause to it. Demonstrable physical symptoms, such as ganglionitis (inflammation of the sensory nerves) in the spinal cord and abnormal SPECT brain scans, have been known of for much longer than this XMRV, and evidence of enterovirus (gut virus) infection have been found in many ME patients decades before XMRV. It is insulting to suggest that it took this virus to “finally solve” the question of whether ME is a real illness or not, and that matters, given the culture of disbelief towards obviously sick and distressed patients, including children, and the cruelty which often resulted.

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