REJOICE, fibromyalgia sufferers! Your nightmare is over! I just deleted my first post about this. I’m trying again. I had shared a news item to criticize it and poke fun at how absurd it was. I should know better. The result was predictable: people started sharing it uncritically, passing it on like a good news item, with no context or hint of reserving judgement. In short, I quickly created a bunch of the same hype that I wanted to criticize. Ugh. So I took it down. So here’s what I had to say again, but stripped of the shareable link. Here’s the link this is about: “Fibromyalgia Mystery Finally Solved!” guardianlv/2013/06/fibromyalgia-mystery-finally-solved/ This writer is just a TEENSY bit over-heated about this science news. Such unbridled optimism is kind of adorable: “The announcement … undoubtedly has patients all over the world rejoicing that the mystery of Fibromyalgia has finally been solved.” Oh, undoubtedly! There’s a problem with this kind of “mission: accomplished!” medical science reporting that usually isn’t mentioned: the lack of empathy for the patient. Most chronic pain patients feel like they’ve been jerked around by experts for ages, told about a zillion conflicting things. The last thing they want is more big hopes: if they buy into it, if they “rejoice,” they risk dire disappointment and pointless distraction. Hope is always a double-edged sword in chronic pain. Allegedly good news is always uncomfortably awkward, like being given a lovely pie that might be full of berries and sugar … or more pain. I don’t know if I’ll write about this research yet. Maybe. It’s a year old. This isn’t fresh. I went looking for some analysis of this study, but so far I haven’t seen anything but breathlessly optimistic news based on a press release from the company that paid for the research. That company’s motives are unclear to me: not necessarily suspect, but certainly murky. Whatever I write, it won’t contain the words “rejoice” or “solved” or “total cure.” ~ Paul Ingraham, SaveYourself.ca The research: ncbi.nlm.nih.gov/pubmed/23691965 Full text: intidyn/images/pdfs/Fibromyalgia_Pathology_for_lay_people_2013-06-24.pdf
Posted on: Thu, 30 Oct 2014 17:20:22 +0000
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