herz a follow-up from Dominie
----- Forwarded Message ----- From: "Dominie Bush" <d...@fms-help.com> To: David Osborne <ide...@juno.com> Date: Mon, 24 Nov 2003 09:38:39 -0500 Subject: Update on the FMS newsletter and website crisis Message-ID: <aaa96egdrakqc...@mx02.lax.untd.com> Dear Newsletter Readers, I received an enormous amount of feedback since the "Death of the Newsletter and Website" email went out a few days ago. I am over the initial shock now and looking for ways to keep things going. Thank you for all of your expressions of appreciation (they warmed my heart tremendously!) your suggestions, and above all, your prayers. Below are some ideas that were sent in: 1. Get a fibro doctor to be associated with the website and newsletter. This way, there is more freedom in what can be said. I noticed from some of the doctors' sites about fibro on the net, that you can say just about anything you want to if you're a doctor. I agree with some of what they say, but not all....but I am not a doctor....just have 21 years experience with the illness and have devoted countless hours to many thousands of FMS/CFIDS sufferers over the past 7 years. 2. Many readers have written their Congressmen about Sen. Richard Durbin's proposed bill to get rid of nutritional supplements. 3. I pulled down half of the site http://www.fms-help.com two nights ago. Sorry if you were still surfing and pages started disappearing. Some readers said they copied everything on the site and it took about a ream of paper! I didn't realize I had been such a prolific writer. 4. I added disclaimers ("I AM NOT A DOCTOR, etc.") at the top of each page that I left on my site. 5. I took off references to specific products and tried to speak in vague generalities. 6. One person suggested I put the first name and last initial of people who write me emails which are quoted in my newsletter. In the past, I have not identified writers, unless they asked me to, in order to protect their privacy. However, by using at least first names and last initials, this would make their words come from them and not from me....I am just reporting them. (That idea might work unless they have an unusual name like mine--I don't think there is another "Dominie B." anywhere. Many people these days have really unusual names, so they might feel a loss of privacy if they are quoted.) 7. Some suggested that I use the word "I" a lot in the site, so that it doesn't look like I'm giving advice but just talking about myself. However, my "100 Tips for Coping" is advice because of the word "Tips" (which means, let me tell you something that you need to know...) 8. Even my website address "fms-help.com" sounds non-compliant, so one reader said I should put "fms-help!" with an exclamation point on each page--which sounds less like I'm giving advice. 9. Some wanted the name of the attorney who contacted me, but right now there's so much stirred up about this subject that I want to keep this person's name anonymous. In some ways I am glad the attorney contacted me, because I needed to know that my site was not compliant. I am aware of what has happened to those who were not---such as when Seasilver was shut down in June of this year. (Hard to believe, but true--750 employees were ordered out of the building by 30 armed people. Seasilver had gotten into trouble with the FTC because testimonials from customers were used in advertising and also because of wording on their labels. Fortunately, they are back in business again and I applaud them!) 10. Some thought I should start an FMS chat line or forum, where subjects could be discussed freely. I would love to, but truly have no time. 11. Some thought I should market the newsletter by paid subscription. 12. Some thought I should make an e-book out of all the newsletters and sell it along with monthly updates. 13. Others thought I should write a book from the material in the site and sell it. 14. Several suggested that I operate the site out of another country that doesn't have the legal problems that we have right now in the U.S. in this field. 15. Some felt that God may be taking my life in a different direction now and perhaps I should focus on eternal matters rather than just physical health. Our earthly bodies can cause so much trouble here for us, but there is an eternal life we all will have in either one destination or the other, and the message of the gospel really supercedes any other effort we might try to make in helping our fellow man. 16. The December newsletter was almost ready to be sent out, but there will have to be a lot of revisions first to make it more compliant. If it is never sent, or if the revisions take a long time and you start having the holiday blues this season, please visit my "Christmas Blues" link at http://www.fms-help.com/Christmas.htm 17. Although I earn a small amount of money from a few products mentioned in the newsletters (consider them "commercials"), there were hundreds of other products that I gave "free advertising" to over the past 7 years because they helped various aspects of FMS/CFIDS. Unfortunately, I can't write a newsletter and do unlimited fibromyalgia support for free. I am a piano teacher and my husband is a pest control technician, so I am not financially able to do strictly volunteer activity for the FMS community, much as I'd like to. My chronic illness since 1982 ruined me financially and I need income to survive now at age 52. 18. We live in a ridiculously litigious and dangerous society. I find I must protect myself from lawsuits, etc. It's sad that we no longer have the mentality of giving friendly advice "over the backyard fence" as one reader put it. Here's a modern-day version of the "Good Samaritan" story that I was thinking of recently: The Good Samaritan comes upon a man faking an injury on the side of the road. He stops to help and is robbed and shot. (That's a crummy ending but it's how I feel about this upcoming "sting operation" of health websites by the FTC in January, as mentioned by the attorney.) 19. Some readers put my "Death of the Newsletter" email in posting groups on the net and others wrote to Larry Wilcox, the actor from CHIPS who is offering to be our spokesman for fibro---see Larry's info at http://www.fibrohugs.com 20. One person commented on the "homespun" appearance of my site and thought spiffing it up to look more professional would help and also adding some doctors to oversee the information or write contributing articles. 21. Many said that it's a shame pornographers get away with all they do in the name of "free speech," but that my site for fibro sufferers is not "compliant." 22. All this site revision is something I may not have time to do. I hope to get some of the parts that I pulled down back up there in a more compliant form, I just don't know when. How can I ever thank all those who wrote or called in response to this crisis!? You are a blessing!!! Many of you are incredibly eloquent with your words! I pray this problem will all be resolved in a manner that pleases God. There are many wonderful fibro sites now where you can get TONS of good information. However, in 1996 mine was one of only half a dozen or so on the net about fibromyalgia! I really felt I had a mission back then. Well, may God bless you and give you a happy Thanksgiving. Truly God is good to all and His blessings are everywhere. I thank God for all of my blessings, including you, my loyal readers. We don't know what the future holds, but we know WHO holds the future! That is a great comfort! "Looking unto Jesus, the Author and Finisher of our faith," Dominie Bush http://www.fms-help.com P.S. TO BE REMOVED FROM THIS MAILING LIST, SIMPLY HIT REPLY AND TYPE "REMOVE" IN THE SUBJECT LINE.
