ILLEGAL to give internet or email advice on health?

[preciousdove]

----- Original Message -----
From: "b10g7" <[e-mail]>
To: "alyme-information" <[e-mail]>
Sent: Wednesday, January 07, 2004 6:25 PM
Subject: Fwd: ILLEGAL to give internet or email advice on health.


True? I don't know, but be careful!

Fwd: ILLEGAL to give internet or email advice on health.:
Date: Wed, 07 Jan 2004 13:24:45 -0700
From: "animals@
Subject: ILLEGAL to give internet or email advice on health.

Passing this along to all of my health-minded friends:


Subject: ILLEGAL to give internet or email advice on health.............
http://www.newmediaexplorer.org/chris/2003/11/25/death_of_the_newsletter_and_my_fmscfids_website.htm

From: Dominie Bush
Sent: Thursday, November 20, 2003 2:08 AM
Subject: 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 [e-mail] 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: [e-mail] 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 wil! l 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". 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 si! te 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

Posted at November 25, 2003 12:00 AM | TrackBack

Comments

1. I founded (12 years ago)and run a support group and warm/hot line in Davis,Yolo County, California. I have not had a website due to finances but have wanted do have one.

You are to be praised for all of the out reach you have done. Thank you.

2. The URL is of the legislative advocacy organization that I volunteer for on my better days (or hours).

Visit our website and use the links to find a copy of SB-577, which we helped to get passed last year. Take it to every health food store,
massage (legit), any alt health person and start a grass roots fire to get similar legislation passed in your state. This is a lengthy process but well worth it and not impossible.

3. Contact the ACLU regarding the free speech issue.

4. Do you have a medical advice disclaimer promently placed at the head of your website? If not, add one immediately.

5. At the beginning of EVERY phone, or even personal, conversation with someone about FM/CFIDS do you state a disclaimer at the very beginning? If mot, begin to do so yesterday.

6. On e-mails, in phone calls and in conversation use the
anti-entrapment phrase/ag! reement. Every prostitute knows to ask a 'John' if he is a cop. If he is and fails to immediately reveal such the case is tainted by entrapment and groundless.

7. Unfortunately our U.S. and States constitutions and laws were all
superceded by GATT, NAFTA, WTO, Bechtel, Halliburton, GB1 and our
sittin, not elected,(by proclamation of the right-wing Supreme Court) dictator GB2, the shrublet.

And because of artificially generated hysteria, laziness and ignorance there was not a general uprising in the streets at the complete overthrowing of our entire foundation of our culture.

That quite acceptance continues despite the stealth amendment of
PATRIOT II last week, redefining "financial document' for the FBI and now they have full authority to snoop inside our computers and all e-mail, etc whenever they want- without any warrent. Remember, PAT 1 & 2 already gave all police and military the ability to enter your home, search it, remove 'evidence' and not even notify you that this ever happened until you are dissapeared without rights to an attorney or dragged up on charges in court (the better of the two options).

Enlightenment has been eclipsed and the darkness has begun to gather
over the earth. Who is more dangerous, a tyrant who tells you he is King and you have no rights or a usurper who fronts as believing in democracy, or at least representative government? Which one has more integrity? Is it better to exist like a mouse before a hungry cat or die as the talisman of God, speaking out for righteousness and truth? Each person must decide. Apparently most of the country is asleep or has no spine.

Unfortunately, it is going to get very much worse before it gets better.

It is agonizing to see every progress of the last 100 years, one by ten, being overturned.

8. For the happy news--I will stand by you with ideas and any
connections I can make for your assistance.

If I had money I would hire a team of great attorneys. One of the
wonderful benefits of living well below the poverty line and essentially owning nothing is the ability to speak the truth--no one can sue you for your money.

Some years ago while very depressed and looking at immenient
homelessness I was given a ticket for not having current tags on my car (now they confiscate the car immediately and sell it in 30 days if everything is not paid-including all the storage fees.) and I expalined to the judge my circumstances, every time I was asked "How soon can you make payment arrangements?" I replied, "Put me in jail, I can not pay and will be homeless soon." The prosecutor was the first one to jump up, asking for time with me to keep me out of jail. The prosecutor and public defender both told the judge I was ill and unable to pay after I spoke with them. The judge vacated the ticket. Today I would expect to loose my car and go to jail. It is now 99.99% corrupt, then only 98%.

One of the first budget cuts that Gov. Terminator announced was the
system of support and programs for severely disabled children.

About the second item he cut was the elimination of benefits to all of the disabled (that's me).

As soon as I can not see my doctor, get my medications or have any
income I will die. Many people die as infants, like I would have if not born in the era of antibiotics. I've had a hard life but overall I am happy. All 57 years have been on borrowed time. The evil afoot may succeed in killing my body but not my soul. Just imagine what I will be able to do to help fight evil from the other side-they won't be able to contol or limit me in any way.Yippy!

Please let me know everything that happens. I will try to find you a
miracle from my contacts and get you a plan and help.

Don't give up.

Donna Russell aka
Crusader Rabbit

A person is only valuable because s/he is a talisman of God. What we
choose do do (ACTION) with and in our lives is what enriches our spirit and makes us pleasing in the sight of God.


Posted by: Donna Russell on November 29, 2003 04:40 AM

Have you considered switching to testimonials. I think the FBI cannot stop you from saying what worked for you, posting what others said worked for them, or listing the results of research. In this case, you are merely passing along information and reporting on research (yes there is some and more all the time). This cannot be described as prescribing.

You should be able to organize this information under the vague headings such as discomfort without using medical terms such as pain. I don't think they can keep you from using the term fibromyalgia altogether. You will need to keep it away from anything that looks like medical advice. Thus you may be able to say "recovering fibromyalgia sufferer".

One of the best websites for looking at the literature is
http://gateway.nlm.nih.gov/gw/Cmd

Use extenders e.g. supplement* will pull for supplement, supplements, or supplementation.

Based on Donna's comments, I take it we are now to think of alternative practitioners as terrorists. I hope the ACLU does take this one on. By the way, I really like "Enemy fo the State." It gets more real all the time.

Posted by: Jan on December 1, 2003 03:08 PM

Is it genuine? I think it is because if you go to the site mentioned in the letter (her own site) it says at the bottom:

"I am sorry that I can no longer give my "100 Tips for Coping" on this website or send out the newsletter".

[aquart]

1. Something isn't right here.

What happens if the health information is in a blog?

What happens if health information is exchanged in a private email list like Yahoo Groups?

Congress is always trying to regulate vitamins and supplements. But preventing Americans from sharing anecdotal experience? That means your mother can't tell you to avoid getting your feet wet so you won't get a cold.

And she can't tell you to have some chicken soup and some zinc lozenges, either.

Sorry, if this is true, it's a Supreme Court issue and you need a really good legal shark.

[unblock]

2. practicing medicine without a license is a big no-no

and passing out medical advice, on the internet or otherwise, is a no-no if you give the impression of having some medical license.

but a simple disclaimer should suffice. i think this is just a case of an overeager lawyer, or maybe the poster didn't realize that a disclaimer would work. notice that this lawyer's opinion has not yet survived a court challenge.

speaking of disclaimers:

i'm not a lawyer, and have no legal license, so take all this with a grain of salt.

[REP]

3. Smells Like BULLSHIT To Me

I can't remember any doctor, nurse or EMT giving specific medical advice on the 'net or the web for good reason - without actually examining the patient, it is impossible to give any meaningful advice. No legitimate practitioner would ever give medical advice, other than the obvious: consult a physician/go to the ER. Anyone who does anything else is a charlatan or incompetent.

I have no idea if the supplement scammers are now prohibited from diagnosing and 'prescribing' for unseen patients that they've not examined and never will, but if so, it's about goddamned time. As a person with several life-threatening chronic illnesses, I am sick to death of these vultures preying on the desperate.

[BiggJawn]

4. But this would stop discussion of alternatives.

Do you think your doctor is going to discuss/suggest Magnesium and Chromium Picolonate with you when he can get a commission for putting you on $150-a-month Actos? Mine didn't. In fact, he got pissed when I asked about it. "Hmmm...OK, if you want to go try some snake oil instead of trusting me, your DOCTOR!"

Yeah, there's a LOT of snake oil and rip-offs out there. Not ALL of it comes from your local "Herb Shop". Rules and laws like these will only limit the availability of information. We will become a captive audience of the Pharmaceutical Industry through our PCP's.

Don't forget, people made informed descisions concerning Ephedra long before the government banned it. Sales went right in the toilet, so the FDA figured "hey, nobody's buying the stuff anymore, soNOW we can ban it..."

[REP]

6. Is This About My Doctor?

No. It's about unlicensed frauds selling thousands of dollars of at best worthless and at worst dangerous products and services.

But since you did ask ... yes, my doctor told me about chromium picolinate and magnesium, and it's sold in the HMO's pharmacy. Sounds like you need a doctor who treats you with some respect. And my Actos is only $5/month, and the monthly liver tests are free. (You do get your SGOT done monthly/bi-monthly, right?)

Are you aware of the studies being done on chromium picolinate that show an increased risk for cancer? Did your herb-seller mention those? Do you know how many quacks are out there willing to sell expensive 'hydrotherapy' and unsuitable supplements to people with symptoms of Ulcerative Colitis, Crohn's and other inflammatory bowel diseases? Any idea how dangerous that is?


I don't think that preventing people without medical licenses to diagnose and treat people they've never examined will stop the exchange of information. People can still talk about anything they want; they just can't tell people that "THIS is what you need to do."

[BiggJawn]

10. Liver tests? WHAT liver tests?

What's a SGOT? My (EX) Doctor never mentioned anything about that. Didn't mention anything about the weight gain, either. That's why I have changed doctors. Sounds like you have the kind of doctor I wish I had. Are you SURE you're in an HMO? sounds like you have Blue Cross, the way you're being treated compared to me.

Yes, I heard about the risks of picolonate. what I read gave me the impression that those problems occur mainly in bodybuilders who think "If 800 mcg a day is good, then 80,000 mcg a day ought to make me REALLY 'RIPPED'!!!" sort of like Gush and his "Hillbilly Heroin". 4 a day is useful, 400 a day is just plain abuse.

There's a lot of quackery out there, I'll not argue that. My point is that given MY experience with my former doctor and his love of Pharm. Co. sales contests, the guy at the GNC isn't the only unlicensed quack prescribing my treatment. But in the case of the GNC guy, I KNOW what his qualifications are, and I can make an informed descision based on that. And if I want to experiment with Cinnamon, or Picolonate, I can. With my doctor, the doubt creeps into my mind, "Is he prescribing this because it IS good for me, or is it his sales rep's hot seller for this month and there's a big commission on the number of scripts written?"

I was diagnosed with diabetes 4 years ago. and high blood pressure 7 years ago. At first, we had a treatment regimen that worked well. Then about 2 years ago, my doctor signed me up for the "Expensive New Drug-of-the-Month Club", and thus started the constant struggle to keep the numbers for both problems under control. My weight went from a steadily-decreasing 260# to over 300# in 2 years, and the only comment from my doctor was "Hmmmm...Looks like you're packing on the poundage. Not sticking with the diet, are we?".

My interest in adjuncts/alternatives was born out my frustration with being treated as a passenger on this ride, instead of a co-driver.

[REP]

12. Yikes!

If you're taking Actos, it is extremely important to have liver function tests done every 30-60 days (90 days after a year or so). Actos is very similar to Rezulin which killed people through liver failure.

If you're taking Metformin, you need kidney function tests (I have non-diabetic kidney disease/early failure so I can't take it and don't know the testing schedule).

The chormium studies I've seen are for much more regular-sized doses. The jury is out, but it is something to consider.

Nope, don't have BCBS; I'm a Kaiser patient! I do have an exceptional doctor, too. Actualy, I have three exceptional docs who monitor my various bits!

[no_arbusto]

13. Since you mention Colitis, Crohn's, and IBD

Are you aware that many doctors are misdiagnosing people with these conditions and then placing them on unnecessary corticosteroids and other pills? Are you also aware that Celiac disease is one of the most underdiagnosed disorders in America and its symptoms can mimic the aforementioned? The "cure" for CD is diet modification. That's it. No pills, creams, injections. Just stop eating gluten.

I don't mean to sound critical, but there is a lot of valuable medical information available online.

[blondeatlast]

5. I'm an insulin-dependent diabetic, and have moderated some popular

diabetes support MBs. Disclaimers suffice. Doctors and nurses DO NOT recommend ANY treatments on the internet--they would lose their licenses in a heartbeat. However, many people who are not DRs/nurses will recommend treatment, and of course, happily "prescribe" it to you. These people were immediately banned from the boards.

On the forums I monitored, we were given explicit instructions to remove these ASAP in order that the owners/operators of the boards would not be held liable.

Not GOVERNMENT, mind you, but the owner/operators themselves. Makes perfect sense to me.

I know this won't go over with the reactionaries (I'm waiting to see this on Snopes), but wanted you, REP, to know that youu are 100% right.

I'm in the same condition you are--I take this stuff VERY seriously.

[REP]

8. Thanks!

I think anyone with any ongoing health problem is glad to see anything that cuts down on the number or fraudulent and/or dangerous snake oil scams. To those of us who know better, they're a maddening annoyance; to those that don't, they could cost them far more than money.

As for discussing other treatments - I'm on several spam-hostile usenet groups where the regulars routinely discuss stuff such as using ginger for nausea, or the current cinnamon studies for diabetes and post our anecdotes. This is a far cry from selling someone a magical product that will let you "throw away your insulin FOREVER!"

[blondeatlast]

9. I should have mentioned--when it came to "herbals" and

nutrition, we only needed to remind people to consult their docs before they began treatment. This is a common problem--people are advised NOT to tell doctors and pharmacists what herbals and nutrition supplements they take, with chilling consequence.

I monitored (not alone, by any means) a HUGE, well-known board sponsored by many pharmaceutical companies. They apparently had no problems with herbals and nutritionals being mentioned, or it would have stopped right away.

Here is the big problem:

I take insulin (have for years). I begin taking say, cinnamon as well. I begin to have serious, recurrent bouts of hypoglycemia. Do I sue the company that makes the cinnamon? Of course not.

I hate to defend Novo Nordisk, but this is the situation they face.

I got no problems with ADJUNCT (in addition to)treatments, but a huge problem with ALTERNATIVE (as in replacement) ones. I hope my point is clear.

[REP]

11. I Gotcha - My Point Was Not Made Well

It was just that there's plenty of discussion about adjunct 'folk' treatments that don't try to pass themselves off as a substitute for seeing a doctor! I personally am for any additional thing that improves symptoms *and* causes no harm (my doc says I can eat as much ginger as I can stand!)

[blondeatlast]

7. I've sent this to Snopes, so watch for it.

[Melsky]

14. Thanks for posting this

I run a very busy message board for people with health anxiety/hypochondria. I have disclaimers that no one should diagnose people, that the site is for people who have repeatedly seen doctors and not been diagnosed with anything. I'm going to go and re write my disclaimers with even stronger language.

I still tell people to go to the doctor if they have any doubts and to get regular checkups.

My site is www.healthanxiety.com if anyone is interested.