Wednesday, September 8, 2010

Wikipedia and CFS

People with the chronic fatigue syndrome are often told that there is no scientific evidence of a physical basis for their symptoms, and that they are just complaining excessively about the sort of normal tiredness that everyone gets. They may also be told that they are just lazy, or are exaggerating or faking symptoms to get sympathy, or that it's just nerves, or that they are just worriers, or that they are just depressed or mentally ill, and their symptoms may be dismissed by ridicule with the use of various insulting labels such as 'yuppie flu'.

In fact, those attitudes and labels generally cause as many problems for the patient as the ailment itself. They are also often told that all they have to do is ignore their symptoms or think positively and they will go away, but it is not such a simple problem or solution. What those patients and the general public may not be aware of is that there are many people who spend a lot of their time inventing those labels and insults, and hiding, or denying, or deleting all of the scientific evidence which has been accumulated over the past 100 years.While I was in Wikipedia I spent 12 months providing a description of the history of research into an ailment called Da Costa's syndrome. However, I had two critics who were systematically deleting all evidence about the scientific discoveries of physical causes, and, at the same time, were filling the page with as many psychiatric labels, and as much obscure jargon as possible. Regardless of any other consideration they were giving them undue weight by flooding the page with such a slant and deliberately understating everything else.

They were also trying to hide the link between Da Costa's syndrome and the modern label of the Chronic Fatigue Syndrome so that nobody bothers to look at the scientific evidence. This webpage provides descriptions of how they did that, and it should be interesting reading for patients who have the chronic fatigue syndrome and wonder why they have so much trouble getting the reality of their ailment taken seriously. The scientific evidence that I provided may enable genuine CFS patients to defend themselves against false accusations about the nature of their illness.

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I have heard similar stories from other CFS activists.  One was certain that Wessely&Co had hired people to keep an eye on their pages, because as soon as anyone posted something negative (or proof that CFS is real), it would be removed immediately, at all hours of the day and night.




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