Death of the newsletter and my FMS/CFIDS website??

[Guest guest]

.. "

I really enjoy this information and am sad to hear this. Anyone have any advise

on this.

Is there a group or someone who can help her..

 

 

-

Dominie Bush

Theresa

Thursday, November 20, 2003 2:08 AM

Death of the newsletter and my FMS/CFIDS website??

 

 

Dear Newsletter Readers,

 

1. I was contacted today by a leading attorney whose job it is to warn those

who give advice related to health conditions on the internet. This is now

illegal,

unless you are a medical doctor. My website at http://www.fms-help.com is not

in compliance with FTC regulations.

 

2. Beginning Jan. 1, 2004, the FTC will begin a " sting operation " where someone

will email or call to ask for help with a health problem. Should the

kind-hearted

soul reply with some advice, they can be fined $250,000--yep, that's a quarter

of a million dollars(!) if they are not a medical doctor. I asked the attorney

if the FTC would sue companies or individuals and was told that the FTC isn't

putting up with it anymore and that individuals will be sued.

 

3. Because of this, I can no longer trust that people who write to me are

actually

FMS/CFIDS sufferers. I will still be accepting email at dom but

may not reply.

 

4. The attorney was most sympathetic with the use of nutritional supplements,

because of a family member with serious health problems that drugs couldn't

help.

The person suffered serious side effects and is now using ONLY nutritional

supplements

and doing much better. The attorney even enthusiastically endorsed a popular

nutritional supplement in the course of our conversation.

 

5. The attorney said that Sen. Richard Durbin of Illinois is trying to get rid

of dietary supplements and described him as " the meanest man on the planet. "

My husband looked up Sen. Durbin's website and found an email address to write

to him: dick My husband also found a good letter on the

net at http://joeclarke.net/vitamins.htm (It's called, " Hey Government, Don't

Take Away My Vitamins. " ) There are many more letters out there too, I've found.

 

6. Well, I have been in tears and grieving the loss of the website and

newsletter

most of the day. I need to do something VERY QUICKLY about my website, but I

have no idea what! Please PRAY for me to know what to do! Many of you have

been with me for years and we have had the most wonderful relationship of

support

and caring. I will always treasure that!!!

 

7. What happened to my freedom of speech?....Or is that only reserved for

pornographers

now?! How can I get information out to people with FMS/CFIDS, if I can't say

anything because I am not a doctor?!!?? I am stumped!

 

8. My monthly newsletter is really YOUR newsletter, because much of the

information

comes from you and I pass it on via the newsletter to others who suffer with

FMS/CFIDS. This is now against FTC regulations and they will be enforced and

I could be sued.

 

9. The information on my website at http://www.fms-help.com has helped many

people around the world and even prevented suicides. For the past 7 years, I

have had calls and emails from thousands of people who desperately needed

information

and help in dealing with their fibromyalgia and chronic fatigue syndrome. Their

doctors have failed them and no one really understands what it's like unless

you have these conditions yourself. When you consider that Dr. Kervorkian has

" helped " 4 women with FMS/CFIDS to end their lives, you realize the desperation

and hopelessness in the hearts of many with chronic " invisible " illness.

 

10. My FMS/CFIDS website has been on the net since 1996, but it appears to now

be coming to an end. At the very LEAST, I will have to severely curtail the

information I offer on my site in the next few weeks to avoid being fined. If

there's anything you want on my site at http://www.fms-help.com, you may want

to print it out now before it is taken down.

 

11. The attorney said that NO health condition can be mentioned along with a

nutritional supplement or advice of some kind. For example, when I say in my

tips site that magnesium helps the muscle stiffness of fibromyalgia, that is

a NO NO! All words have to be in " secret code " almost. Here are some examples:

 

You can't say A.D.H.D. - You CAN say " trouble concentrating "

You can't say pain - You CAN say " discomfort "

You can't say insomnia - You CAN say " difficulty sleeping "

You can't say menopause - You CAN say " change of life "

You can't say fibromyalgia - Now I'm really stuck! Maybe I should say-- " severe

discomfort in my body, count sheep all night, feel like an old lady, can't stand

up for more than 15 minutes, think negative thoughts, have to lie down to rest

frequently, can't stop my mind from thinking, have to go the bathroom a lot,

etc. "

 

12. See " Stop Senator Durbin's Ban of Health Foods " at

http://philadelphia.craigslist.org/pol/18242201.html

There are many more sites on the net about Senate Bill 722. Simply type in

these words at http://www.google.com -- Sen. Durbin's ban on nutritional

supplements

bill--and you will get a lot of websites about this. I have already written

a letter to Sen. Durbin and ask you to do the same if this crisis in American

health is of importance to you.

 

13. I may be pulling my site down at http://www.fms-help.com soon so I can work

on it to try to make it compliant. That will be a mammoth job and I'm not sure

that I have the time or skills to do it. I am also concerned that if and when

I relaunch it, it will say next to nothing, like many other sites that have been

targeted by the FTC. They have been watered down to where there's almost no

point in reading them.

 

14. I am especially saddened because helping fibromyalgia patients has been

my life's work for the past 7 years and I believe was a calling from God. I

was glad that my 14 years of suffering hadn't been in vain--that what I learned

from dealing with FMS/CFIDS since 1982 could actually help other people to not

have to go through all the torments of this illness that I did. But this can

no longer be.....and I don't know what to do with all the love and caring I feel

in my heart toward those who are still suffering? I am in tears! How can I

help if I can't say what helps??!! It is so confusing!

 

15. I will be giving much thought and prayer about what to do next. Thank you

for all your contributions in the past years to the newsletter. We sure have

been a caring and supportive group of people and I have learned as much from

you as you have learned from me. The attorney told me that the newsletter had

great information in it, but is illegal. Frankly, I don't know how to write

a newsletter that uses only the " approved " language and never mentions advice

or a nutritional product in relation to a disease condition. What about all

those companies on the radio and TV who are marketing their brand of calcium

for people's " osteoporosis " ?? I presume they will also be targeted?

 

16. I feel that I am being muzzled. I hate it. I am hurting and confused.

Thank you for your prayers for me to know what to do. If my website disappears

for awhile and you don't get any more newsletters, it's because I am either

working

on trying to make it compliant and still saying something of value, or I have

given up on it. I had the December 2003 newsletter almost ready to go and it's

a great one! Was just putting some finishing touches on it, but will not be

able to send it now, since the whole concept of the fibromyalgia newsletter

violates

the FTC regulations (of giving people advice for a disease condition when you

are not a doctor).

 

I am open to any thoughts or suggestions you may have. I may not write back,

but will be reading everything you write!

 

Faithfully yours,

 

Dominie Bush

904-291-4168