Catching up, & the 2009 version of negative publicity for Fibromyalgia originating with the Associated Press article of February

Well, I'm behind on my blog posting; there have been some big time things going on that I haven't even written about. I've been kind of out of it lately, what with figuring out how to deal with my new diagnoses (Hashimoto's disease, pre-pre-diabetes, severe adrenal fatigue, and low hormone levels for which my rheumy wants to do an MRI of my brain (?!)); and my father has been having some health issues since knee replacement surgery in November of '08. I just got back from visiting him and his wife for a couple of weeks. The good news is they live in Santa Fe, NM and I had a wonderful visit with family, did some shopping and sight seeing - the Georgia O'Keeffe Museum was my favorite - and I was able to help Dad and his wife out some. The bad news is I'm crashing big time after the trip.

The view from Dad's driveway in southwest Santa Fe

Anyway, while I put myself back to rights, I'll be doing some catching up on blog posts. Awareness Day (of chronic, immunological and neurological diseases) is May 12, so I'll be focusing on that a lot.

First order of business: Back in February there was an article published by the Associated Press titled:

"AP IMPACT: Drugmakers' push boosts 'murky' ailment"

The murky ailment is, of course, Fibromyalgia. The article was in all the major news sources, and lots of minor ones. It was about the same time last year that the NYT article came out. It was a similar sensationalistic piece of crap, without big pharma to pile the blame on. I did a series of blog posts on the NYT article debacle last year (look here for a list of those posts), and I feel the same coming on for this situation. When I first saw this year's article back in February, I googled the title and was greeted with 3,550 potential results. A few days later there were 17,600 results. Last week there were "only" 852 results, today 644. So last year we just had some bad PR in ONE of the most influential newspapers in the world. This year it's in different news sources all over the world.

Buy hey, we'll get past it. Some PR types even say that as long as FM is being discussed, it's all good.

So here's the actual article, several versions from several sources. Take your pick.
This article is pretty damning, and as you can see it has sown its seed all over the country, courtesy of the AP's feed and Permission to Reprint feature. The article quotes the same major characters involved in the NYT article last year, plus a few more.

Do you think the author of this article is credible? There's this site called NewsCred where you can voice your opinion on that topic. It's quick to register and I think Mr. Perrone could stand to lose some credibility for the fact that he reported on so little of the research going on about FM, and he talked to so few of the many, many CREDIBLE doctors we have that understand FM.

The NFA has been contacting media outlets that published Mr. Perrone’s article across the nation. In addition to sharing the disappointment of the fibromyalgia community, their response provides accurate information about fibromyalgia, including the science behind fibromyalgia and the lack of research funding.

You can find a lot more information on the National Fibromyalgia Association's page NFA Responds to AP Article, including:
  • The NFA's response
  • How to contact the AP
  • 10 ways to respond to negative and false Information about fibromyalgia
  • Fibromyalgia Fact Sheet
  • An overview on Recognition, Research and Science

Several points made in the AP article were addressed by fibromyalgia experts on February 11, 2009 during a medical talk show produced by Patient Power. Guests included leading FM researcher Daniel Clauw, MD, professor of medicine in the Division of Rheumatology, University of Michigan Health System; Martha Beck, Ph.D., who has been diagnosed with fibromyalgia; and Lynne Matallana, president and founder of the National Fibromyalgia Association.



Andrew's V-Blog from Patient Power on Vimeo.


A tumblin' tumble weed pauses long enough for me to snap a pic.

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