Don't be duped by false promises

[nesielheum]

Weeding out bad apples does not mean that someone does not like apples.
There is so much medical information on the web it is almost impossible for the lay person to separate fact from fiction.
Here are 10 Things To Ask When Evaluating Medical Resources on the Web:
Who runs this site?
Who pays for the site?
What is the purpose of the site?
Where does the information come from?
What is the basis of the information?
How is the information selected?
How current is the information?
How does the site choose links to other sites?
What information about you does the site collect, and why?
How does the site manage interactions with visitors?

The National Center for Complimentary and Alternative Medicine (NCCAM) (http://nccam.nih.gov/) explains these steps quite nicely here
>>> http://nccam.nih.gov/health/webresources/ <<< (http://nccam.nih.gov/health/webresources/)

[Dulane]

Well,

If the website is like this forum you will get all kinds of information, and some of it will be helpful and some not so helpful.

And the intent of the website might be just fine, but products may be pushed that are paradise to some and poison to others.

So, in the end, it is all up to the person who is doing the investigation and their personal health care consultant.

:D

[GitOverIt]

Well Nesielhiem! I think that would also fit any forum...have you posted this wisdom over in the psoriasis site as well as the teen group, arthritis, and caregivers?
For myself I always check where I get info inc. the date, however just because it may be from a few years ago does not mean it is not useful info! :p

Thank you for keeping this forum going....I didn't think you were that into the healthy lifestyle.................. :D

Don't be duped by false promises

--------------------------------------------------------------------------------

Weeding out bad apples does not mean that someone does not like apples.
There is so much medical information on the web it is almost impossible for the lay person to separate fact from fiction.
Here are 10 Things To Ask When Evaluating Medical Resources on the Web:
Who runs this site?
Who pays for the site?
What is the purpose of the site?
Where does the information come from?
What is the basis of the information?
How is the information selected?
How current is the information?
How does the site choose links to other sites?
What information about you does the site collect, and why?
How does the site manage interactions with visitors?

[grannyfranny]

Tim,,,don't you think we know enough to check things out for ourselves?

Why don't you look for something positive to post?

[cedarwoods]

interesting..you got me thinking...who pays for THIS site, and who is it run by? I found an entire list of dermatologists but no naturopaths listed on the home page, and so little info on natural remedies as opposed to pharmaceuticals? Is this site backed by doctors and drug companies?

I guess I'm curious as to what THIS forum's background and viewpoint is...

[ouchyk]

Cedarwoods,

Perhaps this will help;

Purpose of this forum

--------------------------------------------------------------------------------

Dear Psoriasis Foundation message board community,

I would like to reiterate the important points and reasoning behind the creation of this new forum. This new forum was established to provide a dedicated area where individuals can openly discuss treatments and methods that may not follow a Western medicine approach. It is not provided so that only individuals who agree with and/or have tried complementary and alternative methods could post and exchange ideas. This forum is open to all members of the community regardless of their personal beliefs, treatment modality, opinions or thoughts. ALL forums on the message boards are available for ALL members of the community to post and exchange information. No individual or group has any special ownership over any thread or forum. It is fine to disagree with others’ views, opinions or thoughts. However, it is NEVER acceptable to attack them, whether you disagree or not.

We hope that on all forums, the discussions will continue to be lively, educational and spirited, but will also remain respectful and courteous.

Sincerely,
Kelly Coates
Patient Education & Member Services Manager

[cedarwoods]

well...that states the prupose of this particular area of the forum, but this is just one small section of the board. I guess I'm just wondering what the NPF's overall position is and exactly where my membership or donation $$ would go if I were to donate.

[ouchyk]

Cedarwoods,

If you are a full paying member your donation ( whatever it may be ) a funding chart can be found on the front of this site www.psoriasis.org being a non-profit organization the monies are all accounted for.

You can do a search and find the numbers, the NPF does so much more than this message board, they alocate funds for advocacy, scholarship for the annual conference and Captial Hill Day, printing of educational materials, community outreach, support groups, helping with insurance issues, patient education, paying salaries etc. Running an office alone is an expense in itself. You have phone bills, elec, heat, office materials. I'm sure like any business the list is long and varied.

You could also call them during the day and I'm sure they would be more than happy to tell you what exactly your donation will go toward. The staff is always friendly and helpful.

As you have already found out, you need not be a member to belong to this particular section of the NPF ( message boards ). You can join as a friend, or you don't have to join at all, you can just read.


Karen

[misales]

First, a dermatologist got me on enbrel which did nothing for me but make me sicker. My cost for 6 months was $120.00 ($20/month).

Second, I got duped by my union at work. This is the first time in my 20 years working for the government that we have bargained in copay for health insurance premiums. All 4 unions in the city have fallen prey to the health care alliance monster....at the workers expense.

Enbrel was highly advertised as a "wonder drug" clear people jumping into the water all excited, etc.... The expense of this drug is crazy.

I think there is more duping going on in our regular health care than there is in the alternative stuff. Take a look at the cars your doc drives and the homes they live in. Also take a look at the health care insurance buildings. If you want to go into who is making the money, just look and you will see.

Now it's not all about the money it's about results. Why this derm kept me on enbrel for 6 months I do not know.

[misales]

That experience alone is probably the reason I put more merit in some of the complimentary and alternative solutions when it comes to psoriasis.

Quite honestly if you are severe, often NOTHING works, or at least for a while and that might be a long while.

A lot of things fail for psoriasis, western and alternative, can't blame some people for trying, especially if they're expected to pay $1,500.00 per month or more for treatment.

The one thing that I do know however, is that if I live healthier and it doesn't work on P I will be better for it. Now, for the 6 months of enbrel I put in my body, I don't know if there will be any longterm effect or if it did anything to my genetic or biologic code.

[chaimFL]

Tim, one thing you left out is to check to see if the personality on a particular site is listed on www.quackwatch.org. Dr. Barrett has done a wonderful job on that site.

[bratsareus]

"I think there is more duping going on in our regular health care than there is in the alternative stuff. Take a look at the cars your doc drives and the homes they live in. Also take a look at the health care insurance buildings. If you want to go into who is making the money, just look and you will see."


Tim, I have to disagree here. I feel doctors deserve to make some good money, live in nice homes, and drive expensive cars. They have made the sacrafices to get there. Think how many years it takes to become a doctor, not to even mention the cost of school, medical malpractice insurance, and the cost itself to run a medical practice. They literally have no life. Insurace companies are another story altogether, but think about it, if doctors wernt paid a hefty some to live good, they most likely wouldnt work at this stressful level.With what insurance companies pay them, it takes a large patient load to make some money. I'm sure this means longer hours and less time with their family.
Patty

[nesielheum]

"I think there is more duping going on in our regular health care than there is in the alternative stuff. Take a look at the cars your doc drives and the homes they live in. Also take a look at the health care insurance buildings. If you want to go into who is making the money, just look and you will see."


Tim, I have to disagree here... Patty
Hello Patty,
I am not sure of the source for the quote above, :confused: but I agree with you in disagreeing with the statement, 98% of the time anyway. There are good and bad people in all walks of life and health care be it traditional or alternative are no exceptions.

[cedarwoods]

Cedarwoods,

If you are a full paying member your donation ( whatever it may be ) a funding chart can be found on the front of this site www.psoriasis.org being a non-profit organization the monies are all accounted for.

You can do a search and find the numbers, the NPF does so much more than this message board, they alocate funds for advocacy, scholarship for the annual conference and Captial Hill Day, printing of educational materials, community outreach, support groups, helping with insurance issues, patient education, paying salaries etc. Running an office alone is an expense in itself. You have phone bills, elec, heat, office materials. I'm sure like any business the list is long and varied.

You could also call them during the day and I'm sure they would be more than happy to tell you what exactly your donation will go toward. The staff is always friendly and helpful.

As you have already found out, you need not be a member to belong to this particular section of the NPF ( message boards ). You can join as a friend, or you don't have to join at all, you can just read.


Karen

hmmm...it does sound like other than this section of the forum, they are pretty partial to standard medicine. As I'm reading ALL the forums here, through here, it seems SOOOOOOOOOOO many people on standard meds are having problems...with insurance, backfire flares, etc...it honestly seems like those who went to a naturopath or whatever seem to be more positive, and had better results...but I was wondering about the foundation's position on this.

[Dulane]

Amen, Patty.

There is a reason why so many of us believe so strongly in alternative medicine.

First of all, its been here forever, and we'd be foolish to ignore it. Most pharmaceuticals are plant based.

2. I don't have to wait 3 months to talk to some demi-god doctor. I can grab a book, go to the health food store. Eat green beans and feel better about it.

3. I have been poisoned by medical doctors and taken advantage of by a gynecologist repeatedly. (Imagine what you'd like, its true. His assistant finally clued me in, as I was 17 and dumb.)

4. It will not break the family's bank if I explore alternatives. My natureopath cost $45 a visit, and she tries very hard for me. It is more like the old family doctor, who just makes me feel good. Plus she has been right, and it didn't take me 2 years to get diagnosed.

5. About a bazillion of us DO NOT have insurance, so since we are promoting safe and gentle herbs and food from the grocery market, information that we are providing is invaluable and comforting to those out there who will not get insurance this year. Roughly one third of America does not qualify or cannot afford medical insurance. So if you are one of the few that can afford it...good for you, otherwise don't knock what the rest of us MUST do.

6. The majority of us know and realize that America's health care is a union that allows only a few to practice. Not that those few don't have to pay their dues. But so many of us could be seen and treated in more economical and efficient ways, as is done in other countries. We see daily how WE THE PEOPLE are abused and posioned by the government entities that are put here to supposedly protect and heal. (Herbal remedies have at least as good a track record as that.)

7. God gave us herbs and healthy foods, and in all his wisdom, I know he expected me to use them before succumbing to hard core drugs that I know can screw up my future.

I will take the nutritonal route and I know that many others are following.

[ouchyk]

Cedarwoods,

There is an 800 number, as I posted already you could call the NPF. I'm sure they will be happy to assist you with any questions you might have. They being in the business would be best suited to answer your questions, wouldn't you agree?

With milliions of people in the US with psoriasis and those of us with psoriatic arthritis, my thoughts are that those who are severe or having problems and questions would come to a forum such as this. Of course this is just my thoughts and not based on fact.

MANY people do fabulous on medications without side effects and efficiency problems. I have seen so many posters come and go over the years and oh all the folks that I met in Boston and Washington DC. My goodness, how lucky we are to live in the age of the biologics, they work so well on many people, thus leaving them happy :D out of the 60 who went to DC last year very few were from the boards, all of the folks I met there were very happy within themselves and thier treatments both medical and natrual.

I don't know a lot of people who subscribe to all natural treatments, I'm sure like those on medications there are those who do well and those who don't. I do know of a few who do both, and are happy with thier results.

Compared to the big ole' P/PA world out there, this is a very small percentage of folks who post on the boards. And it's hard to tell personalities from behind a screen without meeting someone face to face.

Karen :)

[bratsareus]

First, a dermatologist got me on enbrel which did nothing for me but make me sicker. My cost for 6 months was $120.00 ($20/month).

Second, I got duped by my union at work. This is the first time in my 20 years working for the government that we have bargained in copay for health insurance premiums. All 4 unions in the city have fallen prey to the health care alliance monster....at the workers expense.

Enbrel was highly advertised as a "wonder drug" clear people jumping into the water all excited, etc.... The expense of this drug is crazy.

I think there is more duping going on in our regular health care than there is in the alternative stuff. Take a look at the cars your doc drives and the homes they live in. Also take a look at the health care insurance buildings. If you want to go into who is making the money, just look and you will see.

Now it's not all about the money it's about results. Why this derm kept me on enbrel for 6 months I do not know.
Its this one Tim, Patty

[nesielheum]

Its this one Tim, PattyOk, just for the record, I am not misales although we are both fans of the Michigan Wolverines. ;)

[ouchyk]

Cedarwoods,

" hmmm...it does sound like other than this section of the forum, they are pretty partial to standard medicine. "

At http://www.psoriasis.org/home/ there is a treatment section that has up to date information regarding medication and natural treatments. You must have missed it when you went to the front page, looking to see where your donation would be going. It's very varied, you might just find something to help yourself.

Good luck,
Karen

p.s quackwatch mission statement http://www.quackwatch.org/00AboutQuackwatch/mission.html

[cedarwoods]

Quackwatch is a money making site just like all the rest. They've made a business out of supposedly "warning" people of things, some, I''m sure are warranted, but the donation part at the top of the page assures me someone is profiting.

can we "quackwatch" quackwatch?

[chaimFL]

Quackwatch is a money making site just like all the rest. They've made a business out of supposedly "warning" people of things, some, I''m sure are warranted, but the donation part at the top of the page assures me someone is profiting.

can we "quackwatch" quackwatch?


Actually most of the administrative costs are paid for out of Dr. Barrett's pocket. It's probably one of the few health related web sites that are truely in existence to protect the public from fraud that exist. It is listed as a non-profit organization so the financials are public record. Always research before accusing.

[cedarwoods]

right, like books never get cooked. Better yet, ask Martha!

[makeitgoaway]

right, like books never get cooked. Better yet, ask Martha!


Now Martha cooked the books????

When did this happen?

I thought she was convicted for lying to federal investigators about insider trading...............

[littleangel]

she lied about insider trading?

i thought she went to jail to boost ratings ;)

[nesielheum]

she lied about insider trading?

i thought she went to jail to boost ratings ;) :eek: :eek: :eek: Triple eeks for that one! Well said Ali! :p

[cedarwoods]

well, I may have been wrong abut Martha, and she may be back to cooking food on TV for millions, or whatever it is that she does, but Enron still most definitely cooked books.

[littleangel]

:eek: :eek: :eek: Triple eeks for that one! Well said Ali! :p

why thank you tim ;) i've been keeping quiet since i recovered rich's glasses.
but somethings are just too good to pass up!

[RichJ]

why thank you tim ;) i've been keeping quiet since i recovered rich's glasses.
but somethings are just too good to pass up!
hi ali,
ok give me my glass's back. lol i need them to keep the sun out of my eyes. i can't see half the time and now the sunny get's in my eyes.

have a good night my friend

richard

[bratsareus]

Ok, just for the record, I am not misales although we are both fans of the Michigan Wolverines. ;)

OMG Tim, I guess I made that post sound like I thought you were misales. Sorry, but I did know you and misales are not the same person. I was only addressing you because you started this thread. Sorry,
Patty

[strmchaser]

Misales, I am glad my Dr. kept me on the Enbrel for over 6 months. I saw very little clearing until about 8 months. Maybe your Dr, thought you were a slow responder like I was. Linda

[makeitgoaway]

i thought she went to jail to boost ratings ;)

Or did she go to jail for cooking bad cookies?

I'm confused now!

[littleangel]

http://img.photobucket.com/albums/v255/hudak2/martha.jpg

wait she did cook the books?
now i'm confused...

[GitOverIt]

I hate to disillusion the quackwatch and mission statement people, but, in my opinion the site is very negative towards alternatives, and the leader is a very active opponent of the alternatives! So why give his quotes and web sites on this forum?

I hope I'm correct, but wasn't this forum started for anyone that wanted to pursue the alternative approach to their health?

Here is a link that explains who he really is and what he does!
Oh! and here is a quote from the link....it also has the lawsuits thrown out of court that the organization tried sueing.



It is the phenomenal growth of alternative therapies that has energized a spirited discussion of the efficacy of alternative medicine. Unfortunately, there are those traditional medicine advocates that believe that they "know better" and would like to block the growing popularity of natural healing methods. They seem to want to ridicule alternative medicine and stop the free flow of information spreading through the internet. These heresyphobics engage in constant tactics to discredit what they do not understand with the same reckless abandonment of a drive-by shooter. One can only speculate as to their true motives and ask: What are they afraid of? Is it that perhaps alternative medicine works and people ARE really being cured?

Quite frankly, if they don't like the natural products that we decide to incorporate in our health regimen, then just leave us alone. They can keep popping Prozac to alleviate their patronizing anguish over us and turn to radiation when their bodies succumb to cancer. Cancers that were caused by the toxins that they deny even exist.

http://66.102.7.104/search?q=cache:NbB5OfiiERUJ:www.healthfreedomlaw.c om/Welcome%2520Clark%2520Fights%2520Back%2520-%2520Figueroa%2520Dismissed.htm+quackwatch+sued%3F&hl=en&ie=UTF-8

[misales]

Misales, I am glad my Dr. kept me on the Enbrel for over 6 months. I saw very little clearing until about 8 months. Maybe your Dr, thought you were a slow responder like I was. Linda

Well since this was post cyclosporine I knew what clearing was. Probably the worst thing about enbrel, besides the fact that I wasn't clearing, was that I kept getting sick. Now many would say enbrel had nothing to do with that but when I quit the shots after pleurisy, my continued colds disappeared.

If you react well to enbrel and you wait it out that is good, but if you get sick all the time and even get pleurisy from it I would think the individual might behave the same as I did.

[Dulane]

Sally,

Thank heaven there is still some sanity in the courtroom.

Lets make this news a sticky on the top of the Alternative forum!

[cedarwoods]

what a well written, succinct article.

[cedarwoods]

http://img.photobucket.com/albums/v255/hudak2/martha.jpg

wait she did cook the books?
now i'm confused...

this is how you treat peole who are new here, and share a common genetic trait with you?

It's not a big deal, I can take a joke, but it definitely says alot about you that you don't even know me and are having a laugh at my expense over an innocent mistake.

It really shows what kind of people you are (the two cracking the jokes).

[littleangel]

i'll apologize if you think that was a direct attack on anyone.
i was joking about martha. as you can see i haven't involved myself in any of the back and forth, as that is not in my best interest.

[cedarwoods]

If you see where the Martha joke originated, it was because I mistakenly thought she cooked books, I forgot she did some insider training, but the essence is the same; don't trust everything you see, and unfortunately, some people are dishonest when it comes to more $$$ for them.

So, while you may not have originated it, obviously, the intent of the comment was to try and humiliate me or to attempt to make me look ridiculous for my comment. Fortunately, I know who I am, and since EVERYONE makes mistakes, I see I am in good company ;). It would take a lot more than that to get under my skin. It does however, help me to see people's true personalities.

Nevertheless, I appreciate your apology.It takes a very big person to apologize :)

[bratsareus]

I'm sorry anything on this thread offended you cedarwoods. All these people on here have been very welcoming and compassionate to me and anyone else they have posted to. I read and reread the thread, and I dont think anyone meant to make you look bad. Sometimes laughter is the best way to deal with things. I know when I make mistakes I try to laugh about it with everyone else. Stress is not good for P.
Patty

[nesielheum]

OMG Tim, I guess I made that post sound like I thought you were misales. Sorry, but I did know you and misales are not the same person. I was only addressing you because you started this thread. Sorry,
PattyLOL Patty :) No offense was taken. Although I did do a double take when I read your original post. Did I say that :confused:

[cedarwoods]

you are right, there are so many nice people here :) I guess that's why it's so surprising and contrasting when anyone acts differently.

overall, I am sure I could learn a lot here.