by JOHAN on MAY 12, 2011:
ME/CFS has been known, under various names, for decades and yet we are nowhere near getting the attention we deserve. Look around at all the attention going to HIV, breastcancer, cruelty to animals, endangered species, … Those are worthy causes and they deserve the attention and funding, but what’s wrong with our cause?
The lack of attention and funding cannot be explained by indifference for an invisible disease. The severity of this disease and the impact on patients’ lives are actively downplayed. There is no denying it: the juggling with the many sets of criteria, the word-games, the chronic fatigue with or without syndrome attached to it, the bad science of GET and CBT, … it is all there. To a certain extent, then it crosses a boundary and enters the realm of conspiracy theories. I don’t like conspiracy theories because I find them disempowering and a waste of spoons; complaining about them isn’t going to get us anywhere.
When you do think in terms of opposition, than that opposition, the biopsychosocial lobby, is a fierce one. For decades they have feasted on government funding (aka taxpayers’ money), they have weaved their web of lies, damned lies and statistics, they have perfected their tactics of smoke and mirrors, thinking they are safe working under the government’s umbrella of protection, authority and manna, they publish their papers peer-reviewed journals by like-minded colleagues, spread the holy word on conferences, and have the ear of the powers that be.
We are up against psychiatrists, psychologists, some medical doctors, ignorance, and indifference. What prevents us to raise some hell are the very symptoms of this disease: ... Read more>>