The ICI Experience:

Put Yourself on the ME/CFS & Fibromyalgia World Map The website and blog that go along with the map seem to have some useful information. For instance, I had not heard that Annette Whittemore, who founded The Whittemore Peterson Institute (the private not-for-profit research organization that found the presence XMRV in blood samples from a high percentage of Chronic Fatigue (ME/CFS) patients and in small number of Fibromyalgia samples), has a daughter who suffers from ME.

I haven't posted much to the blog lately; I was able to spend Thanksgiving with relatives in Tampa, FL and when I got back I was of course exhausted and unable to do anything beyond my mountain of laundry, for a whole week. Then the doctor's follow up appointments started. I'm stating here and now for the record that from 2010 forward, I will not schedule any medical appointments in November or December. Those months are on for family and other, more spiritual pursuits. From Cousin David's orchard, Temple Terrace, Florida Thanksgiving Day 2009 Adding to the overload, in early November I had a referral appointment to a neurologist in Atlanta. I had to travel three hours and stay overnight in a motel for this one. The referral was from my rheumatologist because of the results of an MRI he ordered to rule out the possibility of a pituitary tumor. It showed no tumor but some possible abnormality/atrophy to a couple of important lobes of my brain. I went to Atlanta to the...

"Welcome to the Fibromyalgia Wellness Project , a research study sponsored by the National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS), National Institutes of Health. This project is conducted by Collinge and Associates , an independent research organization directed by William Collinge, PhD. The project is now inviting participation by people living with fibromyalgia." This is helping me, when I remember to make the daily entries! You will need to allow a little time to get signed up, and then a little more for the learning curve on how to use the website. But it's pretty intuitive and easy to learn.

1/29/12 Update:  UPDATED: In a Rare Move, Science Without Authors' Consent Retracts Paper That Tied Mouse Virus to Chronic Fatigue Syndrome  I spent the morning of 10/23 trying to understand what this new XMRV research is, and what it means. I wanted to include a picture of the virus but couldn't find one I liked except for the heavily copyrighted image by the Whittemore Peterson Institute, shown on the main page of the Phoenix Rising XMRV Info Center (a most excellent source, and with real-time updates). I didn't figure the WPI was going to grant the little ol' ICIE Blog permission to use their cross section image any time soon, so I waited to post this until I could draw one myself. Luckily for all of us, I found a really good image today on SlantedScience.com : Aren't those fuzzy Cheerios-looking things just wild? Anyway, turns out XMRV could be related to several illnesses including Fibromyalgia. This post contains the gist of what I came up with in...

Had to share a few REALLY cool links I've found - Huffington Post's Game Changers celebrates 100 innovators, visionaries, and leaders in 10 categories who are harnessing the power of new media to reshape their fields and change the world. With readers' help, they are going to pick 10 people who are changing the game in Green. This is a great and FUN way to get to know who the movers and shakers in the green movement are. So far this is my favorite: Isabella Rossalini's Green Porno show on the Sundance Channel - too funny! I think she can get away with this because she's French. From Huff Post on Isabella Rossalini: Current Status: “Green Porno” auteur Changing The Game By: Bringing fun and a bit of naughtiness to a subject traditionally presented dryly: the reproductive habits of bugs and sea creatures. Her short Web films have become an Internet sensation. In them, the one-time face of Lancôme does tongue-in-cheek reenactments of fish and bug sex, donning simp...

What do I know about climate change? Not much. To my unscientific mind, climate change means the beauty and utility of Mother Earth are in danger. To my ICIE mind, the forces that are causing climate change are ultimately responsible for the autoimmune epidemic we're experiencing now. There are those who deny the very existence of the climate change phenomenon. If you are so lucky as to not know any of these folks, I can assure you that they do exist, and I know this because I'm surrounded by them in my personal life. On Tuesday 10/13/09 there were 12,700,000 Google results for the phrase "people who don't believe climate change is happening." On Wednesday there were 57,100,000 Google results for the same phrase... (Could this increase have to do with Blog Action Day being tomorrow?) In any case, lots of results. Why are there still so many people who don't believe that climate change is happening? WikiAnswers the question quite simply: For a number o...

Trailer for the October 15th event: C'mon. If I can do it, so can you.

Dan Brady, a former chiropractor at Whitcomb's FM Relief Center who testified on Whitcomb's behalf at the hearing to consider revoking his license, has opened the Integrated Wellness Center & Spa. They have a Fibromyalgia Treatment Program ; I can't tell if it's related to Whitcomb's technique or not, but others who have experienced Whitcomb's technique seem to think it is. Whitcomb is now TEACHING the technique that helped get his chiropractic license revoked. It has been renamed Neurologic Relief Center Technique (NRCT). There's an excellent review of the patient portion of a workshop given by Whitcomb, by Dannette Mason Rusnak of FibroHaven blog, "Follow up on Dr. Whitcomb & NRCT." Dannette was invited to attend the patient portion of the workshop by an acupuncturist who paid for a day and a half training session with Whitcomb. His training session was followed by an hour long lecture by Whitcomb for the patients, after which the ...

Great article: "Rob Thomas' "Her Diamonds" New Anthem for Autoimmune Disease" , by Lucinda Gunnin on Associated Content. I've just realized that people who subscribe to my blog posts via email may not be getting the video feed that's on the blog in their email, and for that reason I should be including actual links to the original video. My apologies, and here are the links to the two video feeds from my last post, also about this song: The video, via MTV (smaller version on Rob Thomas TV on Atlantic Records site, if your computer is having trouble loading the one on MTV) The lyrics, via YouTube Acoustic version - my favorite, but I think the video is excellent too. I love this song. Can you tell? I also LOVED "Smooth" by Carlos Santana with Rob Thomas; that was my first clue as to how cool Rob Thomas is. Yes, that's Thomas' wife, Marisol Madonado, in the video. You know, the HOT one. It's just like the ocean Under the moon ...

Watch the music video Rob Thomas - New Music - More Music Videos I think Marisol Maldonado has taken a very brave step, career-wise, to come out like this about her autoimmune disease. Being a model is a very physical profession and as those of us with ICI know, coming out at work, any kind of work, is a big deal. I'd like to send her a really big thank you for raising awareness of autoimmune disease in general. I wonder what the song/video title means? Her Diamonds. And she says ooh I can't take no more Her tears like diamonds on the floor And her diamonds bring me down 'Cause I can't help her now Losing her sparkle? Here's what Rob Thomas says about it: The album’s first single, the kaleidoscopic “Her Diamonds,” is the most personal song Thomas has yet committed to disc. Rob’s wife Marisol is courageously battling an autoimmune disease, and “Her Diamonds” was written “about a couple dealing with that on a day-to-day basis,” explains Thomas. “There’s an incre...

National Invisible Chronic Illness Awareness Week // Bloggers Unite I'm writing today as part of Bloggers Unite, which is an off shoot of BlogCatalog . Bloggers Unite is an attempt to harness the power of the blogosphere to make the world a better place. By asking bloggers to write about a particular subject on a particular day, a single voice can be joined with thousands to help make a difference in raising awareness of a particular issue, in our case, ICI. I've chosen to write about chronicity vs. disability because it's an idea that's been rattling around in my head for a few years now. Laurie Edwards, of A Chronic Dose wrote a similar post recently, titled Illness vs. Disability . In it she says "people with chronic illness may be considered disabled, but people with disabilities do not always have chronic illness." This is an important distinction. Her post goes further into the semantics of the situation, and she promises we'll hear more from ...

Video by Campaign for Safe Cosmetics And we wonder why there are so many new illnesses and diseases these days.

Lisa Copen joins us today as the founder of National Invisible Chronic Illness Awareness Week . This year it is September 14-20, 2009 and there are lots of ways to get involved, including a free 5-day virtual conference. Lisa is on a blog tour to help people get to know about the event and how it can specifically encourage you. Hi, Lisa. Thanks for connecting with us here tonight at The ICIE blog. LC: Thank you for the honor of being here. I read a lot of blogs, but recently I've visited more than ever before and I'm amazed at how the quality and quantity of blogs on health and illness matters have grown over the last couple of years. Both the readers and writers of blogs have changed how people perceive different illnesses, because they reveal not just the symptoms of illness, but the daily lives of the people who live with them. Yes. Speaking of awareness, tell us about National Invisible Chronic Illness Awareness Week. LC: Often I refer to it as just Invisible Illness Week...

i do want to sleep but i cannot do it right please do not blame me Dedicated to my mom, who in spite of her best efforts, cannot understand the difference between a sleep disorder (no stage 4 sleep AT ALL) and a lack of good "sleep hygiene." But she's not the only one; this article, Fibromyalgia and Sleep , which as I'm reading it I'm thinking totally "gets it", ends with " For tips on good sleep hygiene, read "Fixing Sleep Problems May Help Prevent Fibromyalgia." " Sheesh. There are good folks on the trail of real answers. I just wish they'd hurry up already. Click the pic for online access to or for a DVD of the conference. *Haiku = 5 syllables in the first line. 7 syllables in the second line. 5 syllables in the third line.

It's almost that time of year again - National Invisible Chronic Illness Awareness Week , September 14-20. Be sure to mark your calendars - it was a great conference last year, and an even better one is shaping up for this year. Plus, you can go in your pajamas if you want to. I thought the results of last year's Invisible Illness (II) Poll "Hate to Look Great?" were interesting and Lisa Copen generously shares all of her articles, so I'm reprinting it here. How do I respond to the "You look so good" comment? Well, I'm lumping the "How are you?" question in with the "You look so good" comment here, because the former is what people tend to ask me. "I'm hanging in there" seems to be my standard response (it's #1 - must be the standard for lots of people) , but I really don't feel like that response is satisfying. In the future I might try some of "The 54," or a variation thereof... maybe add ...

A couple of blog posts ago I mentioned the results of recent MRIs of my neck and brain ( What do The Tough do when they get ANOTHER ICI diagnosis (or two*) ? ). Last month I had an appointment with a spine specialist to see what might be done about the herniated cervical disc diagnosis that was made from the MRI of my neck. This doctor seemed like a nice guy, and after about 10 minutes and $280 he had me convinced that my next step should be to have the herniated disc replaced with an artificial one. He started rattling off information after we exchanged pleasantries; lucky for me I knew to have pen and paper handy, and I can translate rattle into scribble pretty well. To his credit, he used mostly words that I could understand, or at least spell. He did a short exam on my hands and arms and said good - no loss of strength. Then he told me about something called "anterior cervical discectomy", an operation performed on the upper spine to relieve pressure on one or more ner...