Slate: How did the study of chronic fatigue syndrome come to this?

[urbantravels]

http://www.slate.com/articles/healt...or_research_on_chronic_fatigue_syndrome_.html

The failings of Mikovits, Whittemore, or the patients who trusted them arent the point, though. With a disease this debilitating and marginalized, some patients are bound to make leaps of faith; some researchers might start to believe their own press; and a mother may overextend herself in her quest to save her child. But the alienation of the patient community only arose because of the mishandling of CFS by the public agencies. The best way to avoid this kind of fiasco would be for researchers and public health officials to follow their obligation to protect public health, be faithful to the science from the beginning, and fund and pursue the many promising avenues for research on CFS that have recently emerged.

 

[urbantravels]

Comments needed, BTW. Slate is rather notorious for having a very hostile and combative commenting "community", so PLEASE get in there and make whatever constructive comments you feel moved to make.

 

[Snow Leopard]

Remember to be polite when commenting too.

 

[urbantravels]

Hah! I didn't, quite. (But the first version of my response to "Susannah Dore", which the computer ate, was really much ruder and even more ad hominem. Really, though - people always feel very free to rudely speculate about *our* psychological problems and character flaws, so it's hard not to turn around and give the same back.)

 

[markmc20001]

Halleluyah! Looks like she has done a little bit of homework.

Love the link to the "snarky little blog" about the alleged so called "magic trick"!

 

[urbantravels]

I'm told that the commenting system on Slate has been broken all weekend, not accepting any new comments (which is why the comment ticker currently shows 100+ comments but only about 23 or so comments are showing.) The editors have said it will be fixed sometime today (Monday). In the meantime it seems that only replies to existing comments are showing up, and only the "Susanna Dore" thread has had any new posts (you have to click on the "See new items" link below the first three replies to see the rest.) "Susanna Dore" finally responded, without any cites, but with a further airing of her opinion as a "scientific consensus" and more disparaging remarks about how ME/CFS patients think they are "special" and being ignored by "evil doctors." If anyone feels like further replying to her, have at it. But I'll post again when/if the main commenting is working.

Slate has a HUGE readership among people who probably don't ordinarly follow the minutiae of ME/CFS news; my feeling is that the comments there are a good place to correct common misconceptions about ME/CFS and perhaps not the greatest place for internecine squabbling among patient factions. I say this fully knowing that many people are far more focused on taking out the Judean People's Front than the Romans, but oh well. (And I DON'T want to hear about the bloody aqueduct.)

 

[thegirlwiththedog]

Note also, in case you haven't read it, that this is one of the very few pieces of journalism in the mainstream media that exposes the government's mishandling of CFS. That's a story that the general public doesn't have a clue about. You may or may not agree with what the author says about Mikovits and the WPI, but the message that CFS is a real, physiological disease, that there's lots of scientific evidence for that, and that a significant part of the reason that folks don't get that is that the government has screwed up is a critical one.

 

[thegirlwiththedog]

The comments are finally, finally working again -- and not surprisingly, there's an awful lot of drivel that needs intelligent debunking.