Monday, May 9, 2011

Making nice all these years did not help

oerganix said...:

Mr. Maupin should be scolding those virologists, researchers, journalists and patient "advocates" who have been harming patients and their families for at least 25 years, by commission and by omission.

Making nice all these years did not help and we wouldn't have the progress we have by making more nice.

Writers like Maupin keep ascribing patients' motives to "desperately wanting hope". This is nonsense! We may or may not have "hope" but the motive is to get ethical and honest research and treatment and parity in funding them. Those "wants" have been possible for decades but have been stymied by vested interests, selfishness, territoriality and a CYA/don't-rock-the-boat attitude.

Maupin seems to infer that scientists and journalists have a higher level of integrity, honesty and intelligence than the ME/CFS community. More nonsense! When patients, many of whom are highly qualified to interpret the science, politics and journalism around this disease, notice that these gods have feet of clay, they have every right, indeed a responsibility, to say so. That there is a chorus of angry repetitions also makes me cringe at times, but if is much better than the suck-up responses that further the status quo.

If Mr. Maupin wants to sit down, shut up and wait for the establishment to turn into compassionate, competent workers for the truth about ME/CFS, he is free to do that. He is also free to advocate in his own way, ineffective and naive as that way has been proven to be.

I would hope that everyone who thinks everything will be alright if we just trust establishment scientists and the government will re-read Hillary Johnson's book, Osler's Web. We are really about where we were back in 1991 - the year whereby I had already been disabled by this disease for 9 years. I have real and lasting damage.

Many of us got this in the 1980's. Telling us to just wait patiently and trust the gods of science, industry and info-tainment "journalism" for another 30 years is just too little, too late. That is real, lasting damage.

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