I received this email regarding a newly published book that has been created for patients who have decided to make education and Internet-based research an integral part of the treatment process. And it referenced this website, have not heard of this particular book and thought it might be something that would be interesting.

This came from iconmktg@san.rr.com (Raymond Sun)

http://www.icongrouponline.com/health/Spasmodic_Dysphonia.html

Just wonder if any of you have ever heard of it or got the same email and if so, what did you think? Anyone on here ever read this book?

Comments appreciated.

Lib Haywood = Charlotte, NC AD/SD 34 injections BoTox, SLAD 01/01

Good post. I got it, as did alot of others but not everybody (based on checking with other SD'ers via private e-mail). It's been reported to the NSDA (which DID NOT give out our e-mail addresses) so maybe we'll hear something about it in the future.

My concern is not about the quality of the product. I'd like to know how somebody got all our e-mail addresses. However, that's always the risk we take in being online with hackers around. They've hacked into AOL "Voices" before so all kinds of things are possible. We always need to be aware of those possibilities on the www.

To me, until I hear otherwise, that message was just one of the 20 SPAM's I received that day.

Thanks, Lynne

Regarding email addresses, it doesn't require a hacker to get your email address off the BB. At the top of a post you will usually see the poster's name highlighed in blue. Just click on it and their email address (whatever address they used when they registered for the site) will pop up.

If you wish to post without giving an address, there is a way to do that. When you compose a new post, on the page where you type in your message there is a line labeled "E-Mail" which by default has your email address on it. If you delete that line, your message will be posted without the address link.

We've had people on this BB and the Dystonia BB (recently) who didn't understand that and were shocked when they discovered that anyone/anywhere could get their name and e-mail address just by "googling." The Google search engine is very powerful, as we all know. If your name has EVER been on the Internet, Google will find you.

Hackers are the highest level of sneaky cyber-folks who come on and mess things up, computer-wise. I spent years trying to set up corporate procedures to diffuse them. There are *lower folks* also though. I find it amazing that someone would take the trouble of going through this BB and recording all our e-mail addresses (but not *some* people on our mailing list) but, when you want to market a product, I guess that's what you pay someone minimum wage to do.

I'm still quite curious (if this is a factual, substantive, quality product), why they didn't go through formal SD-patient processes and sources. Because they didn't, that tells me alot. In my post, I also wanted people to know that the NSDA did NOT give out our e-mails. I'm glad Jan posted this on the BB.

Very interesting. Looks like you have a small, local ISP (wk.net) so maybe you have some opportunity to influence it. They probably have great customer service. That's an excellent feature.

I have AOL. "Different type of ISP" from wk.net. Not able to change AOL or get out of AOL now. Long story. Not the same level of personal customer service. Thanks for this info. I'm glad to see the small ISP's providing such great service.

I also got this as un-solicited e-mail or spam, as Lynne has said. They probably got our e-mail addresses from this BB as many others who post on here also got it. I've checked with NSDA and they have no details about the authenticity of this book and are not in a position to recommend or endorse it.

I personally would be very wary about forking out $24.95 US (almost $40 CAN) for a book that gives me information about internet resources for SD. A good search engine like Google would do the same for free.

I checked on Amazon and these 'editors' have published, between them, 130 "Official Patient's Source books" - as well as SD, they have researched a variety of conditions ranging from avascular necrosis to sarcoidosis. All of the 130 books seem to have been published in June/July 2002. They must have been busy. The health topics covered in these 130 guides seem to have a common factor - they have bulletin boards devoted to them, just like we do.

It's likely at that price ($24.95) that the books are custom-printed whenever they receive an order. Rather like the 'family history' book offers that purport to offer you the complete history of the (substitute your last name) family. The excerpt available on the Barnes and Noble website for this book is identical to the excerpt for the other books:

"Though many physicians and public officials had thought that the emergence of the Internet would do much to assist patients in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning: "The number of Web sites offering" health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading." Since the late 1990s, physicians have seen a general increase in patient Internet usage rates. Patients frequently enter their doctor's offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding patients through sound therapies. ... This book has been created for patients who have decided to make education and research an integral part of the treatment process. ..."

My only interest in this book is in how the list of email addresses they used was compiled. I suspect that the people behind this have used a program to search out bulletin boards and then extract email addresses from them. If they got an order for a particular book, they would then custom print one copy of the book to order.

The word "Official" in the title is misleading. In my opinion "Official" means authorised ... who by in this case? Certainly not by the NSDA, who to the best of my knowledge are the only organisation that represent the interests of people with SD.

My advice would be to ignore any emails you receive from this particular publisher.

Just as you have deep personal experience with "publishing," my family has deep personal experience with "family genealogy." My mom has done 40 yrs of research on our family and has helped other families find their roots - all "pre-Internet" work through digging in historical records (like family bibles and official governmental records, etc).

I agree with everything you say.

Now that you put it this way, this SPAM-offer we all got reminds me of all the unsolicited "official" offers my family used to get, for books on our ancestral sur-names, probably because someone got access to the list of people doing research at some of the Family History Libraries. The books we were offered on our family names were just stuff pulled out of nowhere and then slapped together. There was no factual content or accuracy or validity to them. It was just a money-making scheme.

So, now, somebody pulled a list from the Internet of people who have SD and are doing a major sales job? Do they think we're naive?

I hope nobody falls for this. Or, if one of us could buy it and we could all speed read it, it would be interesting to view the content. We may get a good laugh.

With the level of knowledge and education and awareness in THIS SD-community (this Bulletin Board) as well as the level of understanding the SD symposiums and NSDA literature promote(s), betcha anything that book would FLUNK as a source! Betcha we know way more than they do.

Thanks for additional valuable info, David and (again)...I'm pleased Jan raised the issue on the BB. Good job(s).

Check out the review of this book at Amazon.com. (Click on Link)

I clicked on that link, and there was NO PUBLISHER listed for the book! Also, the 2 "authors" have almost identical names, and are called "editors".

These 2 people have "edited" numerous "books" that all have the identical tables of content, with only the medical condition's name changing from book to book.

On Amazon.com, one person critiqued their SD book and gave it one out of 5 stars (not a good review).

But, if someone wants to spend the money to report on it...

I was not expecting this amount of replies to my post. I am glad however, that I ask about this book and brought it to others attention. When it comes to this type things we SD'ERS need to stick together. I did look back at the website I mentioned in my post and I could not believe the amount of other books on different health issues that was published by these editor's. I'd like to know how they got our email addresses as well. The nerve of these folks who jump online and gather information just for the money making skeem, if this is what they are doing is outrageous. And after having read all the posted replys to my post, I indeed feel somewhat offended and like I felt when the numerous doctors and specialist told me it was all in my head and basically I was crazy.

I don't know, but based on everyones comments, it seems this type of thing is just another Fact of Life and proves some will go to any links to cash IN!

P.S. Thanks Doris for the kind words and I'm so happy that I was an inspiration to you and I hope I have been and will continue to be for you as well as others. I do hope you soon find another equally knowledgable doctor who can help you with your continued voice problems. My heart, soul and mind will not rest until a cure for SD is oneday wound. Let's all keep up the good work here on this bb and in our own surroundings.

Thanks everyone, it is good to still feel needed here!