I am finding it exceedingly insulting that the 2006 National Patient Summit for Fibromyalgia (Fibromyalgia Awareness Means Everything), put on by the National Fibromyalgia Association, is charging $235-$310 for registration without even having a proper schedule announced. What are these workshops going to be about? What are these speakers going to be doing other than promoting their incredibly laymen-oriented books? (Where are the peer-review published authors other than Clauw and Pellegrino?) What is to be in the exhibit hall? Oh…now I get it.
The exhibit hall, is for \”The Largest and Most Prestigious Gathering of People Interested in Products and Services for Fibromyalgia, Chronic Pain, and Overlapping Conditions.\” Because there are going to be plenty of hours devoted to author book signings and free product samples instead of surveying the largest assembly of symptomatic attendees in history. Because according to the Fibromyalgia Awareness Magazine Survey, this summit was \”Designed specifically for you,\” the consumer. Reader interests (as responded to the poll) indicated that 84% were interested in Alternative Treatments; 92% were interested in Self Management Techniques; 85% were interested in Products & Services Related to Chronic Pain; 75% were interested in Products that Assist Sleep; 83% were interested in Products that Assist Fatigue; and 92% were interested in Nutritional Supplements.
Amazingly (or perhaps not), the results from the readers poll showed nothing about the readers being interested in lifestyle changes; the development of new drugs through pharmacology; the research of finding the source for FMS, CFIDS, ME, and other related disorders; developing the frame of mind to accept, resolve, and move forward; becoming proactive in the community; lobbying for government acceptance, funding, and improvements to current medical guidelines; etc.
No, the readers were shown to be wanting one thing: to buy their way out of sickness through a product, service, or treatment. It just doesn\’t work like that. From something as simple as a cold to something as complex as cancer, you don\’t just plop down some money for a pill to solve everything.
The NFA has been pissing me off for years, which is why I let my membership expire in 2003. They have backed one hack after another, released shoddy magazines with nasty editorial mistakes, and have perpetuated the stereotype of the sick suburban housewife. If it wasn\’t guaifenesin and Amand, it was \’From Fatigued to Fantastic\’ and Teitelbaum, or SAM-e, magnesium, 5-HTP, fish oil, malic acid, botox… Fibromyalgia Aware have endorsed every fraud in the book(s), only to later never mention again in subsequent issues.
This is not going to work without some cohesion, and if we, the \’inflicted\’ (or affected) can\’t even get our so-called experts to pick a course of action (or even a fucking discipline out of which to stem from: is it rheumatology? immuno-dysfunction? neuro-muscular? psychiatric?) we will never find definitive answers. If we can\’t even pick a root how are we ever supposed to know what to tend our gardens with? Geraniums and sweet potatoes are two totally different things. We need to figure it out.
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In non-bitching news, I now have my first appointment with that sleep research guy at Hopkins for two weeks from now… and it looks like my insurance might cover some of it, because it\’s Hopkins, which is a major partner with my insurance. Now if only the cable technician would arrive with my new modem, today would be the happiest day since Saturday.
