Friday, August 28, 2009

My Interview with Lisa Copen, founder of National Invisible Chronic Illness Awareness Week

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 or II Week or NICIAW. Our mission is to have a designated time, worldwide, in which people who live with chronic illness, those who love them, and organizations are encouraged to educate the general public, churches, health care professionals and government officials about the effects of living with a disease that is not visually apparent. Through programs and resources, we seek to recognize the daily challenges of more than 100 million adults and children who live with invisible illness.

Its also a great chance for people with any illness to be involved in a national event to increase the understanding of their own particular disease. They can use our event to blog about the emotions of living with their illness, for example, how they often may look perfectly fine but are in deep pain.

Explain to my readers what a virtual conference is. I know about it because I listened to it last year on Blog Talk Radio, and the year before that I was a presenter; my topic was "Blogging About Your Illness."

LC: The virtual conference is a unique opportunity to "attend a conference" without having to get out of your pajamas! The main event of National Invisible Chronic Illness Awareness Week is this 5-day virtual conference--which is all completely free--September 14-18. We have 20 speakers who are experts in chronic illness and their specific area and each will be giving a 40-minute seminar and then taking calls from our listeners live. The seminars are M-F, 4 times a day, and will feature a variety of topics such as going to college, the challenges of marriage, applying for disability financial assistance, cleaning and organizing, finding the right job, faith, preparing for surgery, parenting, and many more. Here is the current schedule. You can listen to them all free live, or later on your computer, even download them from iTunes. Or they can be purchased on a CD.

Really? So are last years programs available too?

LC: They are. Before last year we used a chat room and had written transcripts, but 2008's conference can also be listened to free from your computer, downloaded from iTunes, or purchased on a CD.

I know a lot of us would love to attend a 5-day conference on how to better cope with chronic illness, but because of our illness, traveling, finances, sitting for so long, and other factors, it just isn't possible, so this is perfect.

LC: Isn't it? There's a certain amount of irony that we began doing the virtual conferences years ago, but now a lot of companies and organizations are choosing this option instead of an actual conference because of the economy.

Tell us why you started Invisible Illness Week? What made you see this as necessary?

LC: For a few reasons. I began Rest Ministries, a Christian organization for people who live with any kind of chronic illness or pain, in 1997 because I saw the need to connect with others who are going through a similar journey in their life. Rest Ministries is also the original sponsor of Invisible Illness Week, although II Week itself is a secular event (not specifically relating to religion or to a particular religious body). Some of the presenters' seminars do focus on spirituality in general and Christianity specifically, but so far more than half of the presentations are completely secular.

Anyway, I witnessed a lot of people who were very bitter and frustrated because they felt so alone and invalidated in their pain. Some people even had spouses who questioned whether the illness existed at all. But I also heard from family members, caregivers, doctors, churches, etc. who really did want to know how to communicate better with those who had a chronic illness. They tried to say the right things, but it was usually the wrong thing, and so they ended up just withdrawing from the relationships.

When illness and pain are invisible it can make it extremely hard for healthy people to grasp the significance of how much it changes one's life. It's easy for one with illness to become bitter when the people they love the most may not even believe the illness exists or that it's being embellished. It's all very sad, and I felt more communication was necessary.

It all sounds very familiar to me.

LC: It does sound familiar, doesn't it? Even those of us who would say we cope pretty well with a chronic illness still have moments when our frustrations can get the best of us. It can be as simple as legally parking our car in a handicapped parking spot and someone walking by gives us "the look" of skepticism. Or maybe one of our dearest friends innocently asks, "So, you must be feeling all better now, right?" There is a big difference between being sick and having a chronic illness and most people don't grasp that difference.

This is what motivated you to begin an invisible illness week? To increase the communication about all of these issues and emotions involved in living with an illness or pain that no one can see?

LC: Yes, I saw such amazing people who survive against all odds and still had hope and faith. I wanted to give them an opportunity to encourage others who were going through depression or hopelessness.

It really doesn't matter what illness we have, where we live, what age we are, how long ago we were diagnosed, etc. The fact that most of our illnesses are invisible and not seen by people gives us a lot more in common that most of the physical symptoms of our specific illnesses ever could.

What illness do you have, Lisa?

LC: Rheumatoid arthritis is the main disease I struggle with. I was diagnosed in 1993 at the age of 24. A few years after my diagnosis I started having symptoms of fibromyalgia and was later diagnosed with that. Unfortunately, I've never experienced any kind of remission that all the doctors hoped for, so the last sixteen years have been a real challenge. I know I could be worse off now and that in some ways I've been very blessed, but I'm also going through the emotions of my illness becoming more visible. My illness isn't just painful every day now, but it's hard to do dishes or drive because my hands and feet are becoming more and more deformed. I take a lot of medications that have slowed the disease progression down, but I've been in a new season this last year and have many surgeries in the near future.

What you do is admirable, but the fact that you do it all with so very many challenges is just incredible.

I heard that you type with just a few fingers.

LC: Yes. I use about 3 fingers and my 2 thumbs. I have a voice program but I usually want to talk too fast and it can't keep up.

That's pretty amazing about the typing thing.

So, how can people get involved with Invisible Illness Week and find out more information?

LC: I'm so glad you asked because just by getting involved in helping us spread the word, like by reading and sharing about this blog, is one way to be part of our grassroots effort. I hope it's rewarding for people to know that they are making a difference just by introducing others to the virtual conference. Everything can be found at our web site National Invisible Chronic Illness Awareness Week, including some fun items like buttons, bumper stickers, tote bags, pins, t-shirts and silicone bracelets that say, "Invisible Illness, Visible Hope."

This year's theme is "A Little Help Gives a Lot of Hope."

We are also accepting blog posts from people to be featured on our site as guest bloggers. And we have a place to sign up to commit to blog on the topic of invisible illness on one's own blog. You can join our cause on Facebook and share it with others, tell people about our video, share our twitter facts about illness, things like that. Tell your doctor, counselor, pastor (priest, rabbi, monk, imam etc.), colleagues; we have brochures available too.

Some people call their local newspaper and share about the week, their support group, or their illness experience. Since II Week is listed in Chase's Annual Events journalists can tie in the personal story with the annual event.

Could you explain more about how one would go about getting their local newspaper to do a story on II Week and tie it in with their personal story?

LC: If you know anyone that works for the local newspaper, that is a great place to start, but most of us don’t. I would read the newspaper and see what reporters or columnists write about and if you see one that seems like they would be open to a story on chronic illness, call and ask to speak to them specifically. If not, you could call the paper and talk to the receptionist and explain that National Invisible Chronic Illness Awareness Week is in September, and you wanted to bring it to the attention of your community that nearly 1 in 2 people live with a chronic condition. We have tips and statistics on our web site www.invisibleillness.com under “media.”

If you attend a support group, you may want to mention that they would be available to comment, or if you have a HopeKeepers group, a lot of media is interested in the Christians reaching out to those with illness “angle.”

Your personal story should have something beyond just your illness and diagnosis journey. Do you volunteer locally? Own a business? Have a service animal? Lead a support group? Even if you are involved with Rest Ministries online, media may be interested in the aspect of how many people connect with others online each day to give support for their illness. Our “virtual conference” fits into that too, as a human interest story as well as a “technology” story.

Has social media made a difference in how you have been able to spread the word about Invisible Illness Week?

LC: Absolutely. Exponentially! For example we've done a series of tweets on 20 things not to say to a chronically ill person and 20 things to say. Our twitter hashtag is #iiwk09 to find Invisible Illness Week tweets easily. A lot of interesting conversations have been spurred by these tweets. Be sure to follow us @invisibleillwk on Twitter!

Over 1600 people have joined our cause on Facebook. We're giving away prizes to people who blog and tweet on the topic.

We both know that there are thousands of people with illness who feel desperately alone and think no one possibly understands what they are going through. What would you tell these people?

LC: Truthfully, if I could I would just sit beside them and give them a gentle hug. I struggle with the ability to sit and not say anything, as I typically want to start problem-solving immediately. But I know most people feel that no one is ever willing to truly listen to what they are going through and all of the emotions involved with it. They don't have anyone to talk to or be vulnerable with.

Secondly I would want to validate the feelings that they are experiencing, that no one understands. Unfortunately, their experience is unique and no one can truly know what it's like to be in their shoes. Illness can be an extremely lonely event. That said, though the illness may be a lifetime event, the isolation doesn't need to be. There are a lot of ways to build relationships with people who do understand more than one might expect, they just have yet to be discovered. If you are unable to drive to a support group, there are many online groups where you will find comfort. The social network I began is at Rest Ministries Sunroom and I recently started Illness Twitters in order to connect people who twitter about illness or health issues.

Those are excellent groups, and I'll just mention here that a good way to find an online support group is to google "{your condition} support groups online." For example: fibromyalgia support groups online.

LC: And lastly, since my faith is in the Lord, I would want those with illness who feel desperately alone and think no one possibly understands what they are going through to know that regardless of what negative experiences they've had with churches or Christians, they may want to give God a try. He can give comfort that we just cannot get from any person. And they can still have God's "Plan A" for their life. The illness hasn't messed it up and bumped it down to "Plan B." I know that sounds cliche, but I hear stories of this every day and have found it to be true myself.

Would you give us some suggestions on getting our church to put a blurb about NICIAW in the monthly newsletter or the weekly bulletin?

LC: Well, since nearly 1 in 2 people live with illness, ask around about who is in charge of the bulletin or newsletter, or ask about finding someone who has influence on what goes in it. What has this person's family dealt with? Have they had someone who has been a caregiver for a disabled child, spouse or aging parent? Or, does someone on the pastoral staff have an illness? Those who have some kind of direct or indirect experience with ICI are the ones who will be most likely to understand the benefit of support for those with invisible illness and their loved ones.

You have a book out that gives people ideas about how to help a chronically ill friend, don't you?

LC: I do. It's called "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend." It's actually a very helpful book. Even though I wrote it, I still refer to it frequently for fresh ideas on how to encourage someone who is hurting. Too often I get stuck in the rut of not being able to think of anything other than another meal. Food is a nice gesture, but there are so many more creative and memorable ways to show someone you care.

We also have cute little JOY gift certificate cards available on the websites that you can give a friend when you are offering to do something for them. JOY stand for "Just Offering You" and one can fill out what they are able to offer (like errands, laundry, taking your child for a play date, etc.) and when the best time is for them to volunteer to help.

What a great idea. It seems like it would be easier to accept help if it was in the form of a gift certificate.

LC: Yes, that is the idea. Groups like a support group or a women's ministry will find these perfect, but they are also nice for anyone who wants to help a friend and say, "Here is what I can do to help and a good time for me to do it."

Thank you again for joining us today, Lisa. Thank you for organizing Invisible Illness Week. I know with your own health issues, and since you are also a wife and mom it can't be easy.

LC: You are right, it isn't, but it's more than worth it! The people I meet or email each day keep me going, and I have a husband who is incredibly supportive. Thank you for hosting me here at your blog today. I hope your readers will head on over to National Invisible Chronic Illness Awareness Week and let their friends know about the free 5-day virtual conference. Its going to be a great time!

Yes, if last year's event is any indicator, it will be exciting and stimulating and inspiring and a great networking opportunity and... I could go on and on. Maybe you should try it out yourself!

Tuesday, August 25, 2009

Sleep Haiku*

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.

Friday, August 21, 2009

"54 Ways You Say You Respond to “You look so good!”", compliments of National Invisible Chronic Illness Awareness Week and Lisa J. Copen

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 "Thanks for asking" to the old stand by. That might feel better to me for now.

54 Ways to Respond to "You look so good!"

“You look so good!” Over 1200 of you took our survey last year (you can still take it here if you want) and you shared how you respond to this compliment that pulls at the heartstrings.

Sometimes you just have to respond… a smile doesn’t say all that you want to say, but one of the temptations is to use sarcasm in our response.

Most of us can say that it depends on who says it. We may be more likely to smile and say, “If only it were true!” to a friend who doesn’t really get it. To the person behind at us the grocery store who commented about our groceries, we are more likely to say something sarcastic since we don’t have to deal with repercussions of a stressed relationship.

Just remember that our seemingly justifed bitter comments back at them can only alienate people more and it does nothing to create an awareness of invisible illness. But who of us doesn’t relate with wanting to say a few of these things on the list below?

The most telling comment I read was from a woman who simply said, “I wonder why they can’t see my pain in my eyes?” It’s a good reminder that though we sometimes think the world should accommodate our emotional needs, who around us is hurting for other reasons (divorce, loss of job, loss of loved one, etc.) and they are wondering about us, “Why can’t she see the pain in my eyes?”

Be sure to add your own at the bottom in the comments section!

1. I am hangin’ in there…
2. I am so blessed. God is so good.
3. Drugs are a wonderful thing
4. I have my good days and I have my bad days.
5. I clean up well.
6. I have my ‘good’ days….but this isn’t one of them!
7. Thanks, I wish I felt better.
8. That’s a perfect example of how you can never judge a book by it’s cover.
9. Thanks, but there are many aspects of MS which you don’t see … would you like to know more about it?
10. That’s what most people think since pain can’t be seen most of the time. Have you heard about Invisible Illness Week? It’s really helpful to let people now that most illness is invisible.
11. I’m trying to appreciate that fact. I know the day may come when I have to use a wheelchair or a cane, and my illness will be more visible.
12. You should be on the inside.
13. Thanks. I have more to be grateful for than I have to complain about - which means I have a LOT to be grateful for!
14. Well I guess I did good job on my makeup, because I am having a hard time to tell the truth.
15. …And that’s all that really matters, isn’t it?
16. Powder and paint, make you what you ain’t!
17. It took a lot of work to look like this.
18. It’s God shinning through me
19. It’s nice of you to think so, but you’re missing the pain and agony that I really am in.
20. And you look so wise. Looks can be deceiving though, huh?
21. I’m having a “good face” day.
22. Yeah. My kid thinks it’s cool I’m an ill person working under-cover!
23. I do a great job hiding how I really feel.My life is still very challenging and probably will always be, but I am hanging in there, keeping a positive faith, and gratitude as THE attitude. Thanks for their concern.
24. I’m trying my best to do well OVER my circumstances instead of being under them!
25. It’s up and down.
26. I’m still struggling, but it IS nice to have a day when I am able to pull myself together and make it out of the house!
27. I’m not complaining about my looks.
28. I’m very good at pretending.
29. Good, because if I looked like I feel it would scare you to death.
30. Actually, I still am really hurting…
31. I am 36 years old outside but 85 inside
32. Thank you. I’m on my way to the Oscars.
33. Thanks, I’m grateful for this good day.
34. Things aren’t always what they seem.
35. Praise God, I’m glad that he enables me to look so much better than I feel.
36. Thanks, that’s God’s joy shining through!
37. Have you ever heard of the spoon theory?
38. I am upright which is better the alternative
39. Thanks, want to swap bodies for a few days?
40. Thanks, I guess I am fortunate that I have an illness that can’t be seen.
41. Thanks. I like good days.
42. Want to step inside my skin?
43. It’s amazing what a shower can do. I guess I am all cried out for now
44. Thanks…I wish I felt it!
45. I’m not complaining about my looks.
46. I’m very good at pretending.
47. Looks can be deceiving (and smile)
48. Thank God for makeup!
49. Thank you for caring. I try to act like I feel better than I really do.
50. Thanks, I am trying to even though it will never go away. i just try to remember things could be worse.
51. I’d be great if it wasn’t for the pain.
52. I’d complain but who wants to listen.
53. If I can’t feel good, at least I am determined to look good!
54. I’m in good shape for the shape I am in!

What do you say? Or what would you say if you could say anything (keep it clean!)*

This list can be reprinted. Please add the following at the end:
This list is compliments of National Invisible Chronic Illness Awareness Week at www.invisbleillness.com, based on a survey of over 1200 respondents. Get involved in Invisible Illness Week each year during September, including our 5-day virtual conference online.

*I'm OK with not-so-clean, if you want to leave a comment as suggested.

Sunday, August 16, 2009

Herniated cervical disc - Oh my!

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 nerve roots, or on the spinal cord. The procedure is explained by the words anterior (front), cervical (neck), and discectomy (cutting out the disc). He made that sound so awful that I didn't even bother writing it down. It looks pretty awful in this video, too.

Then he suggested "pro-disc arthroplasty" at the herniation, c5-6. I thought this was the name of the procedure. Turns out it's the name of the brand of disc he uses for the procedure. See image at right. Wouldn't you just love to have one of those babies implanted in YOUR neck?
Arthroplasty (literally "surgical repair of joint") is an operative procedure of orthopedic surgery performed, in which the arthritic or dysfunctional joint surface is replaced with something better or by remodeling or realigning the joint by osteotomy or some other procedure.
So they're still taking the herniated disc out and putting this cute thing in.

Doc kind of showed me the problem in my neck on a small screen where he had parts of my MRI pulled up. I'm not saying I saw the problem, just that he pointed at the picture and said that it was there. What's on the MRI is nothing like the picture I used at the end of the What do The Tough do post. There's really no comparing the two, to my untrained eye. Below is an MRI image of a herniated disc that seems much more obvious than mine, in the same location as mine, C5-C6:

MRI Cervical Herniation Disc C5-C6, originally uploaded by Kuby!.

I think the doctor should have showed me the herniated disc so I could actually see it; I got a copy of the MRIs on CD I'm not able to find it myself. If you've never seen a whole MRI on disk, those things are full of like hundreds of images. It could be that it's there and I'm just not seeing it...

Anyhoo, the doctor also suggested that replacing this disc might prevent the early stage disc disease (degenerative disc disease, bulging disc... whatever) that's is spreading to C6-C7, from progressing to herniation. He then quickly explained what the surgery would entail: 1.5 hours, one night in the hospital, six weeks recovery time. Sounds easy, eh?

Thinking of the $280 I had to pay before I even saw the doc (a lot of docs are demanding up front payment from self-paying patients these days; that's if they will even see them at all), I quickly tried to think of any questions. I told him I have Fibromyalgia (mostly to see what his reaction would be; I don't want to have anything to do with any doc that thinks it's a bogus diagnosis) and wondered if I might have a greater probability of coming out of such a surgery worse off than when I went in. He started to explain to me what FM is; I did my best not to roll my eyes. Then he said that the specific pain I'm feeling in my neck/shoulder/arm/hand is from the herniated disc and that after the surgery that would be gone, but I would still be left with the generalized pain of FM. Barring any complications, of course. In other words, he could not answer my question but he did a good job of talking around it. In remembering the conversation later, I don't think he even knows very much about Fibromyalgia. If something like a neck injury in a car crash can bring on FM, it seems obvious to me that neck surgery could bring it on if you don't already have it, or make it worse if you do.

He also mentioned steroid injections. I tried that once before and it made me MUCH worse than I was before the injections. It might have been that the doc didn't know how to give an injection to a person with FM, but I'm very leery. And then there's the fact that it seems like injections would be treating the symptoms of cervical disc disease, not the problem.

The doctor's answers left a lot to be desired for me, but I knew better than to push it. I moved on to financial considerations of having such a surgery. He made that seem pretty easy too. Maybe he really can work miracles. Then he seemed anxious to be on to something or someone else so he told me to call to schedule an appointment next. I asked 'for what?' He replied 'to schedule the surgery,' and we were done.

When I got home and googled some of the terms I had written down, I was kind of surprised to find out that the cervical disc replacement the doctor spoke of had only been FDA approved since 2007. There appear to be NO statistics on long term effects of the surgery.

Then I had the idea to call the doctor's office to ask about the possibility of physical therapy, which they also do in his office. The answer came back: No. Your pain has been going on for too long for PT to help. Huh. He just said NO.

Here's the very simplistic website that the spine specialist I saw referred me to: understandingspinesurgery.com.

Here's the type of website I WISH my spine specialist had referred me to: NeckPainExplained.com.

And finally, after very careful consideration, here's the information I'm going to go by for now. It's a pretty radical departure from what the spine specialist advised. It's all on Dean Moyer's website, Rebuild Your Back, and in his books. Dean is also a founding member of the Healthcare Blogger Code of Ethics.

On surgery:

"Regardless of what terms you put it in; it is essentially a partial amputation. There is no way to get around it. The part of your disc they’re going to remove is never going to grow back.

"What you have to ask yourself is, would you agree to that procedure if it were another part of your body? Say a finger or hand, for example.

"If you had an injured hand — and there was any chance that it could heal and be rehabilitated — would you take that chance or would you just give up and go for the amputation?"

On Reversing Disc Degeneration:

The Final Stage: Total Disintegration

"Eventually these dried out damaged disks will totally disintegrate. When this happens the vertebrae in the lumbar region will begin grinding against one another. They may lock up and fuse together leaving the rest of the vertebrae to do all of the work.

"This is very serious. Once the disk has disintegrated, there is no chance of reversing the situation. There is no way to restore a disk that is no longer there."

This final stage is when I'll have any kind of back or neck surgery, and not a minute sooner. God willing, it won't come to that because I'll be reading Dean's books and doing what they say and reversing the disc degeneration in my spine.

A few final notes from the Rebuilder's Forum:

  • Surgery is the common recommendation that a surgeon is going to make...
  • Lots of research indicates that in the long run, PT is as effective as surgery, without the risks/costs that come from surgery.
  • In a perfect world, the information you need would not be so difficult to find and there wouldn't be anybody trying to take advantage of you during this difficult time in your life ... but for now ... not so. Lots of smiling, well-meaning sharks out there!!

Good Herniated Disc Information - The Pain Relief Manual

"Overview: More than just a joint rebuilding program... this book is for anyone struggling with stubborn joint or muscle pain. Covers virtually every form of joint pain from arthritis to fibromyalgia and everything in between.

"Note: This book was specifically designed for people who were unable to begin the above back or neck rebuilding programs due to debilitating nerve or joint pain. It may be the first book you want to get."

This is, of course, the one I'm starting with.

P.S. - I'm not getting any kind of kick back from Dean; I had already paid for all of the books before I got around to doing this blog post.

Thursday, August 13, 2009

Patients for a Moment: A blog carnival for US!

Well, I'm a little slow at getting on this band wagon - you'll have an idea why after my next blog post - but there's this cool thing happening called Patients for a Moment. Read all about it from the blogger who created it, on Duncan Cross.

They're already up to the fifth edition, so if you're like me and you haven't even started reading the included blog posts you have a lot to look forward to.

Sunday, August 9, 2009

This is HUGE: "Fibromyalgia zealot loses chiropractic license"! - Paul Whitcomb and the Fibromyalgia Relief Center are gone for good.

This particular crusade is over, and with a fair ending. Paul Whitcomb, D.C. and the Fibromyalgia Relief Center in the U.S., South Lake Tahoe, California are no longer able to take advantage of unsuspecting people with Fibromyalgia.

I'd like to thank everyone who helped make this happen by spreading the word and by sharing their experiences about Whitcomb and the Center.

This is from the Consumer Health Digest (CHD) #09-32
August 6, 2009
(CHD is a free weekly e-mail newsletter edited by Stephen Barrett, M.D., and cosponsored by NCAHF (National Council Against Health Fraud) and Quackwatch.)

Fibromyalgia zealot loses chiropractic license.

The California Board of Chiropractic Examiners has revoked the license of Paul Whitcomb, D.C., who claimed to have developed a unique method for curing fibromyalgia. In November 2008, the board accused Whitcomb of incompetence, gross negligence, and unprofessional conduct, based on his management of seven patients. The accusation states that he (a) administered excessive treatments, (b) failed to provide adequate structural examinations, (c) failed to develop treatment plans that were medically necessary, (d) failed to perform sufficiently detailed follow-up examinations to gauge patient progress, and (e) advertised with sensational statements that were intended to deceive the public. The number of neck manipulations ranged from 60 to 143 [6]. In June 2009, an administrative law judge upheld these charges and recommended against probation:

"The factors that militate against granting a probationary license are the breadth of respondent's failures to abide by the standard of care, his hubris and zealotry, his inability to recognize that he has harmed patients and his contempt for these patients, his inability to recognize that his treatments have the potential to harm other patients and his inability to recognize the importance of routine responsibilities; such as appropriate charting. Essentially, respondent has indicated repeatedly, by word and conduct, that he has discovered a cure for fibromyalgia and that nothing should stand in the way of his disseminating information about this cure and profiting from his discoveries. It would be difficult, if not impossible, to fashion restrictions under a probationary license that would put these concerns to rest." http://www.casewatch.org/board/chiro/whitcomb/decision.shtml

In July, the chiropractic board revoked Whitcomb's license (effective August 31) and ordered him to pay $23,502.50 for the cost of its investigation.

The casewatch.org link above goes a copy of the 24 page decision of the chiropractic board. Fun reading!

There IS justice in the world.


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