NPF's Psoriasis Resource
Question:
You’ve got some real constructive ideas there, Suz! Go for it… afraid I don’t have a dermie right now, as my old one (whom I only saw very, very occasionally) retired. I have brought printed material from the Arthritis Foundation to my rheumy’s office for him to give to patients, and he seemed to appreciate it (of course, maybe he was acting 
). If I had a dermie, maybe I would do the same. Best regards,
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> I will e-mail them…I also have another thought…several months ago I had > thought it would be a neat idea for psoriatics to pay $10 (yes, out of their > own pockets) to make their derm a member of the NPF. That way, when the > newsletters are received by their office, they might even read some of it, and, > hopefully, put them in the waiting room for others to read. After all, I think > the NPF would appreciate more members and it would mean more ($$$) support. I > myself didn’t find out about the NPF through my derm, but by a post card > attached to a Dovenex sample.
Yes! I happen to know that the NPF accepts gift memberships, even anonymous ones. $10 would probably just cover the costs. Remember, the compassionate membership minimum is subsidized by those that donate more. Some people are mind bogglingly generous. There’s also a professional level membership that is now $60/year. I’m sure that could be gifted to one’s derm, too. In addition to the bulletins, they get a quarterly Forum journal that covers all the hot treatment and research topics. It might actually be a good investment for a patient wanting to experiment with the latest treatments. A doc is more likely to prescribe something that he’s seen in a peer reviewed report. It also has details about risks and contraindications that aren’t generally known. Keeping one’s derm informed could save a lot o grief. If you just want to drop a hint to your derm that he should do it himself, I believe the NPF will send out a physicians kit containing a tear off pad of NPF contact info, enough for lots of patients even if he doesn’t sign up. > My 2 cents for today.
Worth it’s weight in gold. > Suzy in Oregon (I swear it’s trying to snow here today…it’s in the 30’s and > I’m right on the coast…view of ocean, and yep, what’s left of the New Carissa > in Coos Bay)
It must be about that time for spotting whales headed up the coast… For anyone with a sick sense of humor, see Oregon’s beach cleanup methods: http://www.pinch.com/skinny?web=oregon+dead+whale (12MB movie, must-see) — Ed "shilling for the NPF, to make up for my critique" Anderson
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(Lindashm) writes: >I know that most, if not all, of the NPF staff suffers from some type of >psoriasis. I’d like to see an article "interviewing" them and finding out >what >they’ve tried, and rejected. Did any of them get caught up in the Skin Cap >debacle (sp?) >That’s a pretty neat idea. Why don’t you email them with it? I’d love to read >something like that.
Linda, Ang… I will e-mail them…I also have another thought…several months ago I had thought it would be a neat idea for psoriatics to pay $10 (yes, out of their own pockets) to make their derm a member of the NPF. That way, when the newsletters are received by their office, they might even read some of it, and, hopefully, put them in the waiting room for others to read. After all, I think the NPF would appreciate more members and it would mean more ($$$) support. I myself didn’t find out about the NPF through my derm, but by a post card attached to a Dovenex sample. There could even be a column by maybe a "guest" derm each month to tell about treatments that he’s used that were successful and, yes, unsuccessful. It would be helpful if it were known what other "ailments" that person also suffers from. That’s one thing that makes people "connect." I know there’s a lot of people "out there" trying to find some common link…but after reading this newsgroup for the past couple of years, I can’t find one. Most people swear by the sun, but I, for one, find it does not help me, in fact, it seems to exaerberate it!! You wouldn’t believe how many people I’ve met who, when I’ve been point blank asked, "Uh, what’s that on your hands?", say to me, "Yeah, my (fill in the blank) has psoriasis, too." Some don’t bother with going to a derm cuz they’ve been and they weren’t particularly helped. If they knew there were thousands of others who suffer just like them, they might be encouraged to join the NPF. I was, and I’m glad I did. I ordered just about all their brochures and a whole world opened up to me. My 2 cents for today. Suzy in Oregon (I swear it’s trying to snow here today…it’s in the 30’s and I’m right on the coast…view of ocean, and yep, what’s left of the New Carissa in Coos Bay)
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(MicStand) writes: >I believe you need to make a donation to the NPF, a non-profit organization, >to >receive the newsletter.
Lori, Yes, I realize you need to make a donation to the NPF in order to receive the newsletters. It would be nice if the newsletters could be made available in the dermatologists’ offices…It would be nice if the derms could be as well informed as some of their patients about "the latest." I realize they get their "journal" updates, but if the docs made the newsletters available to ALL their patients, then maybe one would think, "Oh, my (fill in the blank) would be interested in this. I’ll just copy down the address/phone and find out more about this." This newsgroup has helped me tremendously and I’m always glad when new people find their way here…and are welcomed by people like LadyAndy, Lorraine, Kim, etc. They learn so much…and I find I’m still learning…even when there’s a lot of "arguing" going on…I’m greatful there are people willing to do extensive research on pharmaceutical companies to alert the others of deceptive advertising. I could go on and on, but I won’t. Suz
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>I know they’re not being sold as "cures," and you know they’re not…but what >about others who see it and ASSUME that because it’s being advertised by the >NPF that it has more merit than it may be worth. Do you understand my >reasoning?
Suz. This is EXACTLY my point. Mic
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>I don’t know if that’s a practical option. Afterall, the ads are providing >$$$’s >for an organization run on donations. Even though the disclaimers are there, >it >does leave somewhat of an impression that the ads are NPF sanctioned. What >are >your thoughts about this solution?: remove the ads, and charge for a >subscription to the newsletter.
Ang, Interesting. I ran off on a tangent without thinking about the obvious! Of course, the only answer would be to charge for the newsletter…but how much would people be willing to pay? $12 a year? (that’s a buck a month) $20 a year? I wonder how much money the NPF makes from those ads. How would they figure how much to charge us? Sigh…it boggles my mind. But I think ALL psoriatics should receive the newsletter…how else will they ALL be informed? I wonder what percentage of people (who read the newsletter) reply to those ads. There’s no way of knowing that, I’m sure. If you answered the ad, would you say, "Oh, I saw your ad in the NPF newsletter?" Probably not…not unless they asked. Don’t think this is particularly "practical," but it’s my 2 cents. Suzy in Oregon
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>I don’t know if that’s a practical option. Afterall, the ads are providing >$$$’s >for an organization run on donations. Even though the disclaimers are there, >it >does leave somewhat of an impression that the ads are NPF sanctioned. What >are >your thoughts about this solution?: remove the ads, and charge for a >subscription to the newsletter.>
I believe you need to make a donation to the NPF, a non-profit organization, to receive the newsletter.
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>I believe you need to make a donation to the NPF, a non-profit organization, >to >receive the newsletter.
Yes… a donation of ANY amount. That is more than I can say for the Arthritis Foundation, although I support them, too. My one complaint is the ad’s should be more segregated from the text, and more plainly labeled as "PAID ADVERTISEMENT" in larger type than was done across the top. Maybe set all the ad’s together at the back, separate from the editorial stuff? Best regards,
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>Dear Linda, >Points well taken. Unfortunately, as is usual with me, I didn’t think each >point out clearly before I wrote them. That’s one of the reasons I don’t >post >a lot…afraid I’ll say the wrong thing…you know, open mouth and insert >foot! > LOL
Hi Suzy – Jeez, don’t be so hard on yourself (I sometimes argue just for the sake of arguing). I think your post was valid. If I didn’t read this NG, I’d probably regard the ads printed in "Resource" with a whole lot more gullibility. The Ray Santamarta ad (analspiel? anasisilskin? whatever), for example, was really well done – it’s possible I’d take a chance on it if I didn’t follow this group. So, I agree, there is a problem – the better produced and showcased the ads are, the more believable they look. >but what >about others who see it and ASSUME that because it’s being advertised by the >NPF that it has more merit than it may be worth. Do you understand my >reasoning?
Yes – I do understand. And, when I think about reading my first issue or two, I recall thinking the products *must* help, since they were in there. But, the NPF does write that they don’t endorse the products – what else they can do? Like I said, it’s a difficult issue. I don’t have access to a lot of OTC products. After seeing an ad in there, I had a store order some dead sea salts lotion for me (knowing full well it probably wouldn’t do a whole lot – and it didn’t! LOL). Still, I wouldn’t have heard of it unless I had seen the ad – then again I’d be $10 richer if I hadn’t bought it. Oh well… >I know that most, if not all, of the NPF staff suffers from some type of >psoriasis. I’d like to see an article "interviewing" them and finding out >what >they’ve tried, and rejected. Did any of them get caught up in the Skin Cap >debacle (sp?)
That’s a pretty neat idea. Why don’t you email them with it? I’d love to read something like that. -Linda
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Dear Linda, Points well taken. Unfortunately, as is usual with me, I didn’t think each point out clearly before I wrote them. That’s one of the reasons I don’t post a lot…afraid I’ll say the wrong thing…you know, open mouth and insert foot! LOL >I don’t think it’s a clear-cut issue. I don’t have access to a variety of OTC >preps in my area – mg217, exorex, and t-gel/t-sal are about the only things >available. Without the NPF’s ads (and this NG, of course), I wouldn’t know >about many of the products out there. I don’t really use any of them, though. >Since they are marked "advertisement," I tend to take them with a grain of >salt. >They do have the look of *endorsed* products, though.
I can remember times when I would see ads in magazines for "curing" psoriasis and running to my derm and asking, "Can I try this?" He ALWAYS pooh-poohed them! Said if I felt more comfortable getting my meds from an advertisement than from him then I didn’t need him. How do you like them apples?? So, I didn’t try them. Of course, I knew nothing about the NPF and this newsgroup didn’t exist then. >After all, most of us have heard much of the so-called hype of >the "miraculous cures" for psoriasis. Most of us have probably tried more >than >a few…looking for the mircale for us! And most of us have come away >disappointed. >True, but there is a difference. As far as I can tell, none of the products >in >NPF’s Resource are being sold as *cures*. A lot of people seem to have good >luck with the OTC products.
I know they’re not being sold as "cures," and you know they’re not…but what about others who see it and ASSUME that because it’s being advertised by the NPF that it has more merit than it may be worth. Do you understand my reasoning? I for one, tried just about all the OTC products before I was properly diagnosed in 1986 (1GP and 2 derms misdiagnosed it in previous four years). None worked for me. > So, if the NPF published unbiased reports…and alerted us to >the new hype that’s bound to crop up…in magazines, tabloids and even TV, >then >we could perhaps make a more "educated" decision about trying something new. >That’s difficult. What works for some people has no effect on others. An ad >for >t-gel might bother me (since all it did was make my hair smell yucky), but >another person might read the ad, try the shampoo and get good results.
I know that most, if not all, of the NPF staff suffers from some type of psoriasis. I’d like to see an article "interviewing" them and finding out what they’ve tried, and rejected. Did any of them get caught up in the Skin Cap debacle (sp?) And you’re right about the shampoo. Maybe there’s a fine line there…is all scalp psoriasis created equal? Are there different versions of scalp psoriasis? Does the T-Gel not "gel" with the person’s natural Ph level? Or what? >Why would I want to try a product for my pustular psoriasis when it >is meant for plaque psoriasis on the scalp?? Some of the products tout >they’re >good simply for psoriasis without making the distinction. >I think that is an excellent point.
Thank you for the compliment. I must add this though: through my membership with the NPF and this newsgroup, I have become an informed patient! I know that just because a doctor calls himself a dermatologist doesn’t mean he knows a lot about psoriasis!! Lucky for me, my new derm "specializes" in psoriasis and she knows her stuff!! I think I’ve said enough now. Suzy in Oregon…where it’s cold and rainy…what happened to Spring?
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>Lori, Ed & Ang & other interested readers, >I don’t know if this is a feasible idea or not, but maybe the NPF "newletters" >might be better "swallowed" if they weren’t "endorsed by" private "entities" >tooting their own horns. Perhaps they could follow in the footsteps of the >"Consumer Reports" magazine which allows NO advertising. They give unbiased >reports and don’t send "subliminal" messages to the reader. The readers choose
I don’t know if that’s a practical option. Afterall, the ads are providing $$$’s for an organization run on donations. Even though the disclaimers are there, it does leave somewhat of an impression that the ads are NPF sanctioned. What are your thoughts about this solution?: remove the ads, and charge for a subscription to the newsletter.
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>I don’t know if this is a feasible idea or not, but maybe the NPF >"newletters" >might be better "swallowed" if they weren’t "endorsed by" private "entities" >tooting their own horns. Perhaps they could follow in the footsteps of the >"Consumer Reports" magazine which allows NO advertising.
Hi Suzy – I don’t think it’s a clear-cut issue. I don’t have access to a variety of OTC preps in my area – mg217, exorex, and t-gel/t-sal are about the only things available. Without the NPF’s ads (and this NG, of course), I wouldn’t know about many of the products out there. I don’t really use any of them, though. Since they are marked "advertisement," I tend to take them with a grain of salt. They do have the look of *endorsed* products, though. >After all, most of us have heard much of the so-called hype of >the "miraculous cures" for psoriasis. Most of us have probably tried more >than >a few…looking for the mircale for us! And most of us have come away >disappointed.
True, but there is a difference. As far as I can tell, none of the products in NPF’s Resource are being sold as *cures*. A lot of people seem to have good luck with the OTC products. > So, if the NPF published unbiased reports…and alerted us to >the new hype that’s bound to crop up…in magazines, tabloids and even TV, >then >we could perhaps make a more "educated" decision about trying something new.
That’s difficult. What works for some people has no effect on others. An ad for t-gel might bother me (since all it did was make my hair smell yucky), but another person might read the ad, try the shampoo and get good results. >Why would I want to try a product for my pustular psoriasis when it >is meant for plaque psoriasis on the scalp?? Some of the products tout >they’re >good simply for psoriasis without making the distinction.
I think that is an excellent point. -Linda
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Lori, Ed & Ang & other interested readers, I don’t know if this is a feasible idea or not, but maybe the NPF "newletters" might be better "swallowed" if they weren’t "endorsed by" private "entities" tooting their own horns. Perhaps they could follow in the footsteps of the "Consumer Reports" magazine which allows NO advertising. They give unbiased reports and don’t send "subliminal" messages to the reader. The readers choose for themselves. After all, most of us have heard much of the so-called hype of the "miraculous cures" for psoriasis. Most of us have probably tried more than a few…looking for the mircale for us! And most of us have come away disappointed. So, if the NPF published unbiased reports…and alerted us to the new hype that’s bound to crop up…in magazines, tabloids and even TV, then we could perhaps make a more "educated" decision about trying something new. I know, too, that the pharaceutical companies are not blameless because as I understand it, they freely give samples to dermatologists to push their product. Even the derms are caught up in the hype. Just call me paranoid…or cynical, but bear in mind, this, of course, is just my opinion. After all, there are different types of psoriasis and different methods of treatment. Why would I want to try a product for my pustular psoriasis when it is meant for plaque psoriasis on the scalp?? Some of the products tout they’re good simply for psoriasis without making the distinction. Perhaps I’m being picky, but, for one, I’m tired of all the "miracles that don’t work." For what it’s worth…2 cents!! Suzy in Oregon
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>> Actually I should have mentioned that I am interested in what you thought of > the content and how the NPF takes no responsibility for what is printed on the > pages that you received. >Lori, >I think the content of both the advertising and the press releases is an >important issue, but I despise the way you’ve introduced this publicly.
Perhaps, I missed something due to my sporadic reading of the group. However, I don’t see anything wrong with discussing the NPF publicly. I don’t agree that the NPF "takes no responsibility for what is printed" in the Psoriasis Resource. I understand that perhaps this thread may be motivated by a certain advertisement. I do agree that "products mentioned carry some implied endorsement.": And this is something which has caused me to have a niggling sense of disappointment with the NPF prior to reading this thread. Granted I am new (having sent my first contribution last year) but the sense of doubt has been sufficient to postpone sending further contributions. I don’t know if I can explain, but here goes….. I think it is appropriate to explore unconventional methods and testimonials in certain sections of the publication. People should be exposed to all methods and opinions. However, I believe more attention should be paid to what is printed in sections which appear to be treatment options sanctioned by the NPF. I can’t really put my finger on this, but I recollect cleaning out some drawers earlier this year and finding an old NPF bulletin from the late 70’s (received from a caring relative.) Comparing the two–the old and the new–just plain leaves me with an unsettled feeling.
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- Hide quoted text — Show quoted text ->> Actually I should have mentioned that I am interested in what you thought >of >> the content and how the NPF takes no responsibility for what is printed on >the >> pages that you received. >Lori, >I think the content of both the advertising and the press releases is an >important issue, but I despise the way you’ve introduced this publicly. >Perhaps, I missed something due to my sporadic reading of the group. However, >I >don’t see anything wrong with discussing the NPF publicly. >I don’t agree that the NPF "takes no responsibility for what is printed" in >the >Psoriasis Resource. >I understand that perhaps this thread may be motivated by a certain >advertisement.
I didn’t realize that discussing the NPF’s publication was a no-no. There was nothing behind my question, other than as asked I was interested in what others thought. Also, it is stated somewhere in the publication that they are not responsible for the contents or something to that affect. I am 3000 miles away from my copy right now so I can’t quote it for you. Ed, it’s nice to hear from you too. What I have learned I have learned here. Mic
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>Didn’t anyone get a copy of the Psoriasis Resource from the NPF? >I am surprised that there have been no replies here regarding what you >thought >about it.
Yes, I got the new Psoriasis Resource "newspaper." My thoughts are: the content is fine, but the size is, in my opinion, unwieldly!! You see, I always used to take my NPF newsletters in the bathtub with me. With this bigger size, it’s too easy for me to get it all wet, plus it’s bulky to store. Yes, I read the suggestion on how to keep them and the reasoning for the new size. But, to me, this looks like the LARGE SIZE Reader’s Digest version. Fine for those whose eyesight is not what it used to be. I prefer the former. My 2 cents. Suzy in Oregon P.S. But, I am adapable, and will adjust somehow.
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>Here’s my take on it: >1. "Ooh – color!" (doesn’t take much to entertain me – LOL) >2. Decent size- easy to fold pages over and bend in half (like a newspaper). >3."Where’s the horoscope??" >Basically, I didn’t see *that* much difference from the old Pharmacy News.
Actually I should have mentioned that I am interested in what you thought of the content and how the NPF takes no responsibility for what is printed on the pages that you received.
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> Actually I should have mentioned that I am interested in what you thought of > the content and how the NPF takes no responsibility for what is printed on the > pages that you received.
Lori, I think the content of both the advertising and the press releases is an important issue, but I despise the way you’ve introduced this publicly. The NPF made an announcement here stating their policy, apologized for being deceived by a company that has conned the best, and said they have no intention of future dealings with them. Your post in outrage that the NPF would do that, and now this false accusation, are not in our best interest as supporter of the only major organization that acts as our advocate. They have acted in what they believe is our best interest. The credibility of the NPF is important, and they don’t make decisions lightly. I think their stated policy is sound. I have privately forwarded to NPF my well voiced views on the need for the listing of ingredients, and they have been responsive. They are well aware from their own survey that the members feel that any products mentioned carry some implied endorsement. They are carefully reviewing their policy and content with that in mind. In my opinion, the NPF has acted very responsibly in their publications and comments. They take private complaints very gracefully, you have my word on that. Then again, I try not to send them any unfounded accusations. Perhaps if you offered them a constructive suggestion… As for the presumed topic, I like the slicker look, but I’m with Suzy on the bath managability of a journal over a tabloid format. I fold my magazines backward to keep them from flopping around. Also, I’m not sure if I’ll be able to find a photocopier big enough to violate their copyright on the better articles. I’m not ashamed to plug the NPF, because I know how hard they work for us. They don’t promote in the group, and they offer the full membership with benefits for whatever anyone can afford to give as a donation. — Ed "is there a less squeaky mic stand for this soapbox?" Anderson The National Psoriasis Foundation website is at http://www.psoriasis.org
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Did anyone get a copy of the National Psoriasis Foundation’s publication Psoriasis Resource? I am interested in what people think of it.
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Didn’t anyone get a copy of the Psoriasis Resource from the NPF? I am surprised that there have been no replies here regarding what you thought about it.
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>Didn’t anyone get a copy of the Psoriasis Resource from the NPF? >I am surprised that there have been no replies here regarding what you >thought >about it.
Hi there – Mail takes a while to get out here in the boondocks… Here’s my take on it: 1. "Ooh – color!" (doesn’t take much to entertain me – LOL) 2. Decent size- easy to fold pages over and bend in half (like a newspaper). 3."Where’s the horoscope??" Basically, I didn’t see *that* much difference from the old Pharmacy News. -Linda
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>I am surprised that there have been no replies here regarding what you thought >about it.
I got it a few days ago, but I’ve been so busy I haven’t had a chance to do anything more than look at the cover. What do you think? Fess up! Rick Rick G (in CA) (To reply remove .NO.Spam from my e-mail address)
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Hi Linda: I just got my "psoriasis resource" also. Mail must be slow everywhere. I think the post office had a problem with the larger size since it had one corner pretty well demolished. It is bigger and prettier though. I enjoyed reading the article about psoriasis of the nails. It was the best article I had read on the subject. Marjean
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