The ICI Experience:

From the National FM Association:  Update on FDA rejection of Sodium Oxybate for treatment of fibromyalgia. Here's a link to the first post I did on the topic of Sodium Oxybate for FM:  The FDA is considering approval of another new drug for Fibromyalgia that could help with sleep, fatigue and pain. Sodium Oxybate has been rejected by the FDA so I guess that's that. Some day someone will figure out why I get NO stage 3 or 4 Delta sleep at all, ever (see Finally - sleep study results! ), or they'll come up with a drug to treat the problem safely.  Until then I wait patiently, if also constantly exhausted no matter how much apparent sleep I get. I did get a nice response from the FDA to my letter of support for Sodium Oxybate for the treatment of fibromyalgia.  It's below. The response  also contains a link to a transcript of the meeting where info was presented and discussed by a panel, and to additional meeting material s. On this web page the Augu...

Mixed media Sleeping Beauty , originally uploaded by melanie_hughes *. The NFA is asking people with Fibromyalgia to email or fax the FDA a letter of support for approval of a new drug for FM.  The NFA has even provided a basic letter for us to use: there's one for people with FM who have taken the drug, sodium oxybate (generic name) or Xyrem (brand name), and another letter for people with FM who support approval of sodium oxybate but have not actually taken it themselves.  Go here to see my letter.  The NFA says on October 11 the next important step in the process for FDA approval of sodium oxybate will take place, so be sure to get your letters in before that date. I've done a lot of research on this medication, before and after I tried it.  If you are wondering some of the same things I was, maybe the information and links below will help you. An FDA panel, or advisory committee has actually already said no to sodium oxybate .  I think the actua...

Source: InvisibleIllnessWeek.com.   I added the emphasis. Laura Brydges, B.A.Sc., M.A., and Jennifer Martin, PhD, Industrial/Organizational Psychology have put together a survey about invisible disabilities and have asked those involved with National Invisible Chronic Illness Awareness Week to be involved! These women bring their personal experiences of having disabilities together with more than 30 years of research and health communication expertise. They began a group last year on Facebook called “Hidden Disability” and now have launched an invisible illness and hidden disability survey that asks some very important questions about disability. It is a secure and confidential English-language survey that will give adults everywhere their chance to share their opinions on some new disability issues. The survey is the result of advocacy efforts of two women who both have disabilities. They have funded this research through garage sales , and are relying on wo...

"For the chronically ill, blogging is a powerful thing. We often feel isolated and invisible, but when we put ourselves out there in a blog, we suddenly have a voice, and we start to build a community. It does take a lot of energy, specially when you explore topics that are emotionally taxing, but the end result is worth it. I know I’m never alone in this, and I can help other people see that they’re not alone, either." Adrienne Dwello of the FM and CFS Blog on about.com , from "My Fibro Story" on the National Fibromyalgia Association's Fibro Blog In 2007 when I wrote about blogging about illness , my research was predominantly on writing about illness because I just couldn't find much information on blogging about it.  In the paragraph above, Adreinne has wonderfully summed up how blogging about illness is different from writing about it.  She's really good at that, summing things up.  Blogging about illness is all about community and the f...

This is part one of my  post for Invisible Illness Awareness Week .   It's an update to the series of blog posts I did for National Invisible Chronic Illness Awareness Week in 2007. The three posts that I wrote in 2007 are all still pretty pertinent to the topic, but as I mentioned in my last blog post (links to the three 2007 posts are there), there's a lot more being written on blogging about illness now than there was three years ago.  So I figured an update was in order.  Plus Lisa Copen, founder of II Week, suggested it as a topic. Part 1 of the 2007 series of posts was also about the mechanics of blogging.  In 2007 I referred to Jakob Nielsen's Blog Usability: The Top Ten Design Mistakes.   I still think it's  an excellent resource, with one argument about item  #10, "Having a Domain Name Owned by a Weblog Service."  Nielsen says: "Having a weblog address ending in blogspot.com, typepad.com, etc. will soon be the equiva...

National Invisible Chronic Illness Awareness Week 2010 September 13-19 National Invisible Illness Awareness Week is upon us once again.  I'm thankful for that, because I know that Lisa Copen, the lady behind it all, has had a rough year since II Week 2009 - check out her " outrigger splint ;" and she doesn't even mention the flesh eating virus she had to beat after the surgery!  The fact that the event is happening at all this year is a testament to her strength and resolve in this mission to increase awareness of invisible illness. If you're a blogger and you want to participate with a blog post you can sign up at Bloggers Unite: National Invisible Chronic Illness Awareness Week 2010 .  And if you're not a blogger you can see all the blog posts for this event in one place there. My blog topic for this year will be "Blogging About Your Illness: An Update," per Lisa's suggestion.  In 2007 I was a participant in the II Week Virtual Confe...

Well, I didn't make the 7/24/2010 deadline for this round of Bloggers Unite; I was going to find out how to make my blogs accessible to all. Silly me, I though this would be a no-big-deal kind of thing to do. Wrong. I should really learn to research these things BEFORE I make commitments about doing them. I'm living and learning, and although I'm late for the event, I wanted to at least report back what I found out. First I went to WAVE , a Web Accessibility Evaluation Tool that I found on the Blogger's Unite for People with Disabilities page, and plugged my blog's address in. That told me everything that was wrong with my blog regarding accessibility. And that's all. No clue as to how to fix it. Or if there are any clues, I'm too clueless to pick up on them. So I went back to the Bloggers Unite for People with Disabilities page and put in this comment: Any hints on how to make a site/blog 100% accessible? 16 days ago by: sherrillynn I...

From the good folks at BlogCatalog, another great blogging event: From the email I received notifying me of the event: Dear Fellow Blogger, As bloggers, you and I have the unprecedented ability to raise awareness about important issues by simply posting about them. When we act on behalf of a cause and then write about it, we dramatically increase the positive impact we can have on the world. Today, I am asking you to take action on behalf of all the people around the world living with a disability. Just like those of us who are able-bodied, they simply want to live a happy and productive life. Help us eliminate the barriers to participation and the prejudices they face every day by taking a simple action. You can donate to an organization that supports people with disabilities, sign an online petition asking for equal access, make your blog 100% accessible. Then write about it. Tell others how important it is to make all the opportunities our world has to offer accessible...

Three years ago today I started this blog; and today I'm starting another new venture as a Consultant with Ava Anderson Non-Toxic.  I'll write more about it soon, but for now here's a link to my new AANT website: http://www.avaandersonnontoxic.com/sherriljohnson I hope that if you would like to order anything from the only company in the world whose products all score a big, fat zero on the Environmental Working Group's Campaign for Safe Cosmetics "Skin Deep" Cosmetic Safety Database , that you will order from my page.  Thank you! Share this!

From Psychology Today blog, The Scientific Fundamentalist: "More intelligent people wake up late and stay up late." Why Night Owls Are More Intelligent than Morning Larks   

Sorry it's been so long since I last posted - I try to do at least one post a month and I'm overdue.  I haven't been keeping up with my email either...  Lots of reasons, nothing I can write about just yet. I'm inspired to write this evening because I chanced to open my 4/22/10 Stigmabusters Alert from NAMI, National Alliance on Mental Illness.  So much good stuff in there, I'm just going to share the whole thing with you, and encourage you to sign up for your own Stigmabusters Alerts. I especially like Joey Pants' new website NKM2 - No Kidding, Me Too!   (although there's something about Harrison Ford's earring that's just not right...)  And be sure to see if PBS in your area is airing When Medicine Got It Wrong , a documentary about NAMI's origins as a grassroots movement and founding as a national organization, including early battles a...

distraction "Done in an arm chair, with scissors, double-sided tape, and watercolor crayons." By Samantha Kira of Journal Girl.

Dr. Stephen Barrett was instrumental in helping to get Paul Whitcomb's chiropractic license revoked (see sidebar for my collection of posts concerning Whitcomb; all ICI Whitcomb posts are here ). Dr. Barrett's Quackwatch site is one of my top two to go to when I suspect quackery. If the practitioner isn't mentioned on Quackwatch, I run the site on The Quackometer . But that one is for a different blog post. Practitioners who are mentioned on Quackwatch sometimes retaliate to the facts written about themselves there by resorting to smear campaigns and even frivolous lawsuits against Dr. Barrett. I'm still getting crazy comments on my posts that mention Dr. Barrett and I haven't even written anything about him since August of last year, so I can only imagine the kind of stuff he gets. I got this from the Quackwatch Consumer Health Digest weekly e-newsletter: Issue #09-45, November 4, 2009 Please Help Quackwatch and Dr. Barrett A personal Message from Robert S. ...

First, I apologize to my readers who subscribe to this blog via email, for the blog post from May of 2009 that went out to them on Saturday morning. To the best of my knowledge I didn't do anything to make that happen. I'll be checking in with FeedBurner on that. Here's today's post on Savella. Brand new and fresh content, I promise. You may have already heard that a Petition to Ban Fibromyalgia Drug Milnacipran (Savella) was filed with the FDA on January 20, 2010 by a group called Public Citizen. This petition was immediately picked up by the Associated Press. Word gets around (and around) when an article gets picked up by the AP. More on that later. My first reaction was, who the hell is Public Citizen??? "Public Citizen is a non-partisan, politically left-of-center, non-profit public interest advocacy organization based in Washington, D.C., with a branch in Austin, Texas. Public Citizen was founded by Ralph Nader in 1971.http://en.wikipedia.org/w...