A NOTE ABOUT ALTERNATIVE APPROACHES THREADS

[Eve-Maridy_R]

Note from the Psoriasis Foundation Member Services Coordinator:

In the last couple of months, it has come to our attention that the message boards have become an unfriendly place for just about anyone attempting to share their treatment success with alternative therapies. After many complaints from board users, we would like to publicly address this issue.

There are literally hundreds of different ways to treat psoriasis -- from the strongest prescription medications to over-the-counter products to dietary and natural approaches. In a similar way, each person's psoriasis is somewhat different, with varying symptoms and responses to treatment. There is no way to predict which approach will work the best for any one person.

Therefore, one of our goals for having our message boards is to create a forum where all people can share their individual approaches. What works for one person could work for another, and we believe most people participating on the boards are interested in sharing successes and helping each other.

Recently, however, there seems to be a pattern any time somebody visits the boards with a success story based on alternative therapies: they are immediately attacked and labeled as 'spammers.' It is our concern that this mentality -- this lack of giving people the benefit of the doubt before attacking them -- is driving away new participants in our community who could benefit from the information on the board and who may, in turn, have something useful to share as well.

We are very aware of the large number of 'spammers' that are out there, and we do our best to remove them and keep them out of the boards. But not everyone who has success with alternative approaches is such a person.

These are your message boards -- we prefer to monitor them and only step in (with information, encouragement, resources, etc.) when absolutely necessary. We do not want to dictate the tone and community feel of this board -- that is up to you, and by and large this community is an overwhelming success after only seven months (since this site launched). However, the "attack first" approach to alternative therapies that seems to be prevailing does not seem to be consistent with the open-minded, supportive and inclusive environment we would like to see continue.

We encourage you to accept all new board participants with an open mind, and judge them only when they do something that truly places them in the category of 'spammer.'

We'd like your feedback on this issue! Let us know your thoughts by either posting a response to this thread, or by e-mailing me directly at erice@psoriasis.org.

Sincerely,

Eve-Maridy Rice
Member Services Coordinator
erice@psoriasis.org

[GitOverIt]

I couldn't have said it better....I agree wholeheartedly I also agree that if we can give each other their space, we wouldn't need another forum. I too think we have not only lost members, but that we have members that are reluctant to speak out for fear of ridicule...at my age, we get a little more thick skinned (no pun intended) and tend to say what we want.....there are some people on here that are too intimidating/blunt for some of our shyer members....again just my personal opinion...which I love to give....LOL:D ....but still I wouldn't want anyone to change, just give some space to other options/opinions.

There are other sites that I visited when first discovered this abomination (P) .... I looked, read, and dismissed them as too negative for me...too much attacking of anything other than the pharmaceuticals...some of you like that ....I don't! so I joined this site. Many times I almost quit...because of a few....I'm glad I didn't cause Eve Rice is GREAT as a moderator/monitor and I think the problem will dissolve into the nethers.......



p.s. I just want it to be known that I never wrote to the board and complained about any individuals I only wrote to ask for a forum for alternative approaches.....

I also just went back and re-read some messages to supposed spammers and it made me sick to my stomach to read the remarks made and some of the other people not only backing up the remarks.... but encouraging them its really too sad to think we could attack someone when we aren't even certain they are spammers......

[SouthpawGrammer]

In fairness to this thread I am probally the most guilty.

http://www.mainzelahr.de/smile/boese/box2.gif

So for the record:

1. I apologise
2. I shall be good from now on
3. I shall never respond again

I promise.

Instead treat myself to a lovely coffee

http://www.mainzelahr.de/smile/essen/zeitung.gif

[iwant2benormal]

I am glad this was said. I tried to say this, but not in as eloquent terms. When I had responded to another thread, People thought I was being disrespectful, but I truly wasn't. I guess I could not communicate my point as well as Eve could. It was all a mob mentality, you know. It was like a group that seemed to think tha same way, and I am tired of it. A lot of people got attacked, such as SadSkin and her nut butter thread. After reading that, I only posted once, and have not posted until now. And again, no one stood up for her because of the mob mentality.
I understand everyone is wary of "snake oil merchants" but that does not mean you should be like this to people who have information to share.
I would also like to offer my apologies to anyone who felt offended by what I've said in my last posts, for there was no disrespect intended, just exasperation at the issue. I was merely standing up for those who were attacked.

Thank you for starting this thread. Glad to know I am not alone.

[PJ Leary]

Hi all,

Thank you to Eve-Maridy for this post. While I try to always be open minded and supportive of others and what works for them, I do hope that I have not personally fueled this fire. I do remember a thread that started out fine and turned pretty nasty after some time recently.

In short, I think that all need to excercise both tolerance and good manners. Mutual respect and support encourages more of the same, and I think those are main goals of all who are active here.

I do believe that this situation has been exascerbated by a very real experience of many veterans of severe disease. Many of us have tried so many alternative things over the years, with little, temporary, or no positive effects. I know that I have also wasted a lot of my hard earned money on these alternatives that I have willingly tried in my frustration and pain. Now, don't take my use of the word "wasted" the wrong way, but that was money that could have been put to many other, more fruitful uses ( like piano lessons...)

I believe that some of the resistance to this comes from concern that others not be taken advantage of unfairly. However, your point is well taken that it is important to presume the best of intentions when we find others pursuing alternative treatments.

I know that I am often known to post that diet has never changed my experience of psoriasis, but I always also say that I am pleased if it is working for someone else, and won't they please keep us posted on progress.

Personally, I will take closer note of my posts, or perhaps choose not to join in on these threads. I am very sorry if my forthright manner of writing has caused any offense, for surely none has been intended ( except where blatant ).

[MikeK]

I strongly believe that there is room for alternate treatments on this Board. As a matter of fact, I frequently participate in threads that discuss alternate treatments. I even provide the links to previous threads on the subject.

I usually welcome new posters to the Board with open arms.
However, I also sometimes challenge new posters whose information sounds too good to be true. Everyone has read those posts. They claim to have found something that works without providing any details. (They frequently post the same vague information on more than one thread and in more than one forum.) Anyone who wants to know more is invited to send an e-mail. Some of these posts may be legit. Unfortunately, however, most of them are not. As I frequently point out, anyone who sends an e-mail automatically sends their e-mail address to the recipient and that could lead to spam. I strongly urge the NPF to either delete such posts as possible spam or to respond by posting a warning about sending e-mail to someone who is not known.

Just my two cents.

Mike

[kbradley]

I too would like to thank Eve-Maridy for her thoughful response to the situation. Still, a separate forum would be a wonderful convenience for those not interested in the traditional approach.

Are we too small a group to make a separate forum practical? I understand if that's the case as there are probably numerous "interest groups" who would like to do the same. Just wondering how many of us would make use of an alternative forum? -kiki

[GitOverIt]

of course I would still be interested...it would be wonderful to feel the relief of being able to say what we want without being criticized for trying our own methods.......and the feeling of encouragement from others of the same inclinations.....I hope its a possibility....

[chaimFL]

I have posted in opostion of many alternative treatments, not with the intention of bashing what works for one person or another, but more so to let people know that these things are not necessarily safer than a medical approach as it is often portrayed nor is there a probability that it would work (that's not to take away the possibility).

I find that there are people that push alternative therapy to in return bash modern medicine, pharmaceutical companies, and dertatology as a whole. So if balance is needed, it's needed both ways.

I generally thought I was being helpful to people who may be vulnerable to scams. I guess that's not the case. So I apologize to anyone who may have been offended and I'll refrain from posting on such threads that I may have a descenting opinion on.

[GitOverIt]

and this is why we would like our own forum!

[LynneHella]

I appreciate you posting this! I think there is definitely something to be said for open discussions about different treatments whether those be alternative, main-stream, whatever!

It's okay to have a dissenting opinion but it should be presented it in a nice, supportive, POSITIVE way. If we don't discuss the pro's and con's of different treatments, how are we going to learn from other people's experiences?

I'm not into alternative treatments as much as some people are, but all the negativity turned me off to the point that I questioned staying with the forum (and it wasn't even directed at me!). I'm glad the issue is being addressed. Thanks again, Eve-Maridy. You all do a fantastic job!!!:D :cool:

Lynne

[PTener]

Hi everyone,

I would very much like to be able to discuss alternative treatments without such dissention. There are no absolutes with P or PA. Any time we can help ourselves and/or others through sharing of information or lessening of harm to our body, the better off we all are.

I would hope that we can refrain from generalizing about treatments. Not all alternatives are dangerous nor are all medical treatments. Not all of either category are safe, either.

This board is open to people of all ages, backgrounds, abilities, and conditions, both mental and physical. Let us remember to set an example to the younger ones, or the more fragile, who may be reading our threads. Let us all be more tolerant.

Peggy

[hazy]

Having learned the hard way about attacking first and asking questions later, I am glad to see this issue brought out.

It is up to all of us to keep the board a place where we can come and get information, share our knowledge, our experiences and in return, to learn and be supported. I have been involved in many boards, and this one is by far the friendliest and best monitored.

I don’t subscribe much to the non-conventional methods of treating this disease, nor do I believe that there is enough demand for its own forum, but I have absolutely no problem with those that do post and offer their views without the brutal bashing of resent.
Having said that though, should it becomes clear that you are here only to sell your unsolicited goods or take advantages of anyone, then you should expect to be dismissed by whatever means necessary.

[makeitgoaway]

Originally posted by GitOverIt
and this is why we would like our own forum!

Why would you post that after he just said, "I'll refrain from posting on such threads that I may have a descenting opinion on."?

[debber_1]

Well said, I think everyone deserves the benefit of the doubt...
Innocent til proven guilty...

[MikeK]

Hi Everyone,

A little over a year ago several people, including myself, participated in a very lengthy discussion about "alternate treatments". It was a fascinating discussion that covered a wide range of topics from diet to supplements and just about everything in between. There's even a couple of good book recommendations. There was no arguments. No one was slammed or put down and it gave me a lot to think about.

I'm not sure if there is enough interest in a "alternate treatment" forum, but it seems to me that it would be very useful if that thread could be "pinned" so that it's always on the top of the Board. That way people who are interested in alternate treatments (especially newbies) won't have to search for it and people who aren't interested in such a discussion can move on to other threads.

BTW, here's a link to the thread: http://www.psoriasis.org/forum/showthread.php?threadid=3404&highlight=Peggy

Just my two cents.

Mike

[jrs]

there is so much to weed through on this board that lots of good information is being lost. its apperent that it's of no interest to alot of people on here and alot of people wont put there ideas on here because of that . a smaller more detailed forum would be nice.
thanks eve that well said.

[LynneHella]

Great responses!

Mike, I'm responding to your post because I think you raise some very interesting points that I want to address specifically.

I agree with you on one point and disagree with you on another.

I agree that there is not enough demand for a separate forum. I'm going to expand further on that thought: I don't think it's conducive to sharing information if people have to go to separate areas of the message boards to get the information they need about treating their P. Right now the NPF board separates P from PA. I thought that was an excellent idea, but if there are different forums for different types of treatment, we'll end up having one for alternative, one for holistic, one for PT, one for prescriptions, and the list goes on...So, I agree with you...I don't think a separate forum is a good idea. I want to read all the treatments relative to P in the P forum.

I disagree that the "alternative treatment" thread should be pinned to the top. I think I understand where you were going with this...trying to get a happy medium so that the information is readily available to those seeking it without creating a whole new forum. But again, why not do that with other treatments as well?

That's just my two cents. ;) Or is that four cents now that I've posted twice to this thread? :p

Lynne

[shalee]

I have had some positive results from an "alternative" treatment from an herbalist and have mentioned it on the board. Is that considered "spam"?

I'm asking because I'm discouraged when a question I really, really, really want/need and answer to I see it get 200??? views and absolutely no or very few replies?

I come to the boards with "rookie" questions. I have no family members with p and no local support group to turn to.


I NEED YOU GUYS!


If I've "spammed" and am being punished for it by not being responded to - I apologize!!

An alternative treament thread ( Maybe call it "Off the Beaten Path" ) would be nice for those of us who want to try something that won't leave us unable to have children or want to stand in a glorified tanning booth for hours a week.

Maybe just more specific forums?

Shalee

[LynneHella]

Hi Shalee!

I don't think anyone is punishing you for your postings!!;) I think when you don't get many responses, it's just because people don't have much experience with that particular subject. Even if I'm familiar with a product, I may not respond if I don't really have anything informative or useful to post.

If you don't get a response, don't give up! Post a reply to your own thread requesting that ANY information on your subject be shared.

Sometimes I just miss threads. So just post a friendly reminder and I'm sure you'll get a response.:D

Lynne

[lahdove]

This is so important, and effects us all. Thank you for giving us a chance to address it.

I like all the information here, but it's so hard to find what we need sometimes. Maybe when we title our threads, we can keep this in mind. Can we come up with a short code that will help, and can be added to the title? I can't get on here every day, and it's overwhelming to try to catch up on what we missed.

Shalee, That is why you don't always get an answer. I'm also sorry when I see a newbie with so few answers. But, If I can't help, all I can do is welcome. And, I don't always have time to do that. Lynne is right. Bring it back to the top. We do want to help.

This is such a great group, especially compared to some of the other sites I've tried. I hope I've never hurt anyone, but I do apologise to each and every one I might have caused distress to. I"ve always intended to skip threads I felt negative about. We all need positive encouragement. But, if I ignored you at any time, it may be that I didn't have time to get to all the posts.

Good Health to all, and God Bless.
Dove

[SouthpawGrammer]

Originally posted by shalee
I have had some positive results from an "alternative" treatment from an herbalist and have mentioned it on the board. Is that considered "spam"?

I'm asking because I'm discouraged when a question I really, really, really want/need and answer to I see it get 200??? views and absolutely no or very few replies?

I come to the boards with "rookie" questions. I have no family members with p and no local support group to turn to.


I NEED YOU GUYS!


If I've "spammed" and am being punished for it by not being responded to - I apologize!!

An alternative treament thread ( Maybe call it "Off the Beaten Path" ) would be nice for those of us who want to try something that won't leave us unable to have children or want to stand in a glorified tanning booth for hours a week.

Maybe just more specific forums?

Shalee

Totally agree! I tend to delete posts if i get no responses and alot of hits - i do try to answer any thread even if its just to say

I dont have a clue :D

which is most of the time...

[PJ Leary]

Hello all,

I think it sounds as though the intentions amongst us are for the best. I would like to reitterate the suggestion for mutual respect and support as being a cornerstone of the real strength of this community.

I do believe that we are in fact a community. The different posts here, from folks on both sides of the fence, as well as those in the middle just accentuate that fact to me.

I do not think that an alternate forum is necessary for the alternative treatment folks to have their voices. Mike is right about that. In fact, I think that creation of such would detract from the board.

Perhaps some of the folks most interested in these treatments should step up and do some leadership. There is plenty of room, and no-one seems to have emerged as one willing to do so. I think that if some people were willing to take on that role there would be a different experience for the folks posting in this vein. I realize this may be an unpopular idea, but that hasn't ever stopped me in the past ...lol:rolleyes:

Now I'm at $0.04 too.

[cntw8]

I totally enjoy reading EVERYONE'S comments. I don't have to share their ideas, but certainly appreciate what they have to say. You just never know what will work for some and it has given me new perspectives on ALL treatments out there that anyone can try. So, keep sending new threads, and just enjoy the site!
Stephanie

[neese]

Thanks Eve-Maridy

Eloquently stated.

I know I felt slightly pounced on with my Food, Drinks and Flareup thread I started....but I'm a sensitive soul as it is....so I tried not to take it personally but rather just understand some people will feel strongly about their individual methods and will stand by that without the compassion to support others interests and curiosities.

Sooo...It never made me mad enough to not come back....we ARE all individuals with a common challenge...which is to DEAL with the p. which includes various treatments that will alleviate the symptoms...and the biggest hope of all that someday there IS a cure.

I completely support each persons methods to create better circumstances for themselves and their p. It may not be what does it for me but I certainly want to hear about their successes...and their experiements with new things. I don't want to be close-minded about potential solutions either so I want people to share share share..... I said in that particular thread I'd eat cow crap if someone said it worked for them. Ok, maybe that's going a little far...but I certainly want to be open to possibilities and not just pout my way thru p. for the rest of my life.

that's my 33 cents



:D

[hazy]

Originally posted by PJ Leary
Perhaps some of the folks most interested in these treatments should step up and do some leadership.

I actually agree with PJ on this…..anybody that wants to have “any” topic, upfront and center of the first page, should be willing to put in the leg work.

BW and the photo gallery come to mind………what a role model...

[SouthpawGrammer]

Originally posted by MikeK


I usually welcome new posters to the Board with open arms.
However, I also sometimes challenge new posters whose information sounds too good to be true. Everyone has read those posts. They claim to have found something that works without providing any details. (They frequently post the same vague information on more than one thread and in more than one forum.) Anyone who wants to know more is invited to send an e-mail. Some of these posts may be legit. Unfortunately, however, most of them are not.
Mike [/B]

Totally agree.

There are spammers out there and in my humble opinion they should be commented on in case someone falls for this that reads the board.

No new comer here has been made feel un welcome. On the contrary been made to feel right at home.

Its hard to know who is who, but as most people will know the recent Ozzy threads were more than highly offensive. Removed - thank god.

I have had a few comments directed at me and I have been non too pleased. I try now not to say anything.

I have always found this board very important and informative.

I suppose the only way of dealing with the real issues of spammers is to report them.

No one here is offensive on purpose. And never to a new person whatsoever IF this person is not a spammer - and as we all know - spammers are not difficult to find.

I certainly try not to be ofensive anyway. If i have been - i apologise again.

I just would hate anyone to pay good money for a "miracle cure..."

My 50cent opinion (inflation...)

[PJ Leary]

Ok,

OMG, Hazy has agreed with me on something of import. ( I'm gonna call the kids and tell them!! )

Seriously, leadership is needed in this area if in fact it is to become a serious part of the board. Volunteers??

Anyone who would like to step up can count on support from those of us already doing it, and I am sure from NPF.

I would love to see this become a serious and well done part of this board, as you point out, we'll be able to help more folks. I readily admit this is not my area of interest or expertise.

[Kimbercat]

OK, I've gotta get my .02 in too! Although I am not at all into alternate therapies, they work for some, and that information needs to be available to those who are interested. I've even found some alternative ideas that are useful for me when I am unable to use more traditional pharmaceuticals while on study drugs.

I think that many of what have been considered "attacks" are actually meant to help warn unsuspecting newcomers that there are those out there who do seek to take advantage of our desperation at times. We just need to be a bit less suspicious (yeah, right!...from me, the original cynic!!), and a bit more cautious in how we approach posts which may be legitimately from those seeking to share something different that works for them.

They laughed at Jonas Salk (inventor of the polio vaccine) too.

[kbradley]

What I'm often reading in this thread is "I'm not into alternative modes of treatment myself but I feel the need to warn the unsuspecting, naive, and newbies about the spammers and quacks out there who are ready to take your wallet."

Why not let the people who ARE interested and involved in alternatives police these threads. I think we have a pretty educated and experienced group as it stands. Perhaps no one is willing to step into a leadership role (and can someone explain to me why this is necessary) when there is so much input from people who insist alternative treatment is not their thing.

A separate forum, IMHO, would lend a little breathing room to all.

-kiki

[GitOverIt]

I agree ...and also feel that when I brought the thread (thanks to Mike for giving it everytime someone asked about "natural ways") about alternative options back to the front of the line from the far distant archives and wrote to Eve, our moderator about starting our own forum, that was stepping forth so to speak.....also all the positive responses from other interested "alter-natives".... (hey I like that word....) I also dropped Eve a note telling her I would help where needed.....does it sound like we want our own forum?
plus I'm getting better and better every day ...just waiting to see what winter will bring...altho summer didn't do anything....I attribute my "getting better" to other means.....

Hey I'm upping the ante to $1.00's worth!!!!

[LynneHella]

This is a very good discussion. It’s good to hear from both “sides” without animosity. I’m going to be extravagant and up the ante to $2!

Everyone deserves the benefit of the doubt. Bad first impressions from newbies should not warrant bad behavior. I would rather err on the side of caution and welcome a newbie (even if I was suspicious of their posts) rather than attack a suspected spammer who was in actuality a newbie needing support but getting off on the wrong foot. I tried to do that with Bomber and I (infuriatingly) had it thrown back in my face a few weeks later, but I would do it again. If anyone is concerned about a particular person, talk to them! It will become obvious very quickly if they are just selling the next latest and greatest “cure”.

Okay, there are spammers out there. Absolutely, we should be careful to not get sucked in to their empty promises. Yes, it is admirable that we all look out for each other as a family (and that should continue) but we should also be able to discuss any treatment. It’s a known fact that different treatments work for different people. Nothing guarantees results. How much money have we all poured into prescriptions from our doctors that haven’t worked?

That being said, it shouldn’t be necessary to separate the “alter-natives” (good one!) from everyone else. I feel that would just create a very wide division between two groups of P sufferers when we should be sharing as much information as we can.

Lynne

P.S. Sally, wonderful news! I’m so glad you found something that is working for you.

[MikeK]

Originally posted by kbradley
Perhaps no one is willing to step into a leadership role (and can someone explain to me why this is necessary) when there is so much input from people who insist alternative treatment is not their thing. Hi Kiki,

Whenever somebody asks a question about alternate or natural treatments, I really can't answer their questions. The best that I can do is to offer the link to the alternate therapy thread and hope that whatever it is that they're looking for has already been addressed. I sometimes suggest that people use aloe. I recently endorsed Sally's suggestion to use corn starch to help with the itch, but that's about it.

If someone asks a question about diet, I can explain that what works for one person does not necessarily work for another and that some people say that there is no connection between diet and p and that others say that their p becomes worse if they eat certain foods. I can also give them some links to some threads on the subject.

That's why we need someone to play a "leadership" role when it comes to alternate treatments. I don't know how the request for a separate forum is going to pan out. I know how frustrated you are. However, I think that it's vital that people like yourself read the Board as often as possible so that they respond to anyone who are asking a question about alternate therapies. (If you don't not the answer to the question, then you can at least let the person know that he or she is not alone.) Hopefully, the more that the topic is discussed, the less contentious it will become.

Just my $.02.

Mike

[danjobe]

Yes i also would like to thank eve maridy for being a warm wonderful human lol
oh oh yes and also thank pj for the alternative matini approaches

[Zwijndrecht]

I think a few of us might have been a bit over zealous but I think mostly we do ok.

Shalee, I went back and searched out your threads...one did not get many answers because it was conference time...one seemed to have two good answers and required no more...we certainly are not cutting you out...all your questions are good ones.

I will keep this in mind when answering on the threads...

One general comment...there have been an incredible number (or so it seems) of new posters and it is very hard to give them all a full read...

I have been hurricaned off the net for about 10 days,,,need to get a feel of what goes on here now...I had the impression we had calmed down a little.

Maybe we should chew on ourselves a bit...

[joan_of_arc]

This is an interesting thread with a lot of good suggestions and opinions. I was slammed once on another site for talking about Pagano's diet. Whatever happened to freedom of speech? Did we all forget this?

I agree that spammers are a pain you know where, but i think most of us know who they are and what they are. I don't get offended by them because before i PUT ANYTHING INTO OR ON MY BODY I DO EXTENSIVE RESEARCH FIRST. Whether it be prescription meds or alternative treatments. A lot of the time when there is a post i don't agree with or think its a spammer or whatever, i JUST SKIP OVER IT. Sometimes i may even read it and get a giggle. Or maybe even have an actual thought. I can think for myself ya know.

We all know what works for one doesn't necessarily work for another. That's what makes this disease frustrating too. But i like and NEED to have as much info as possible because i believe that is my major line of defense against this problem. I enjoy reading about everyone's experiences because i believe if you want to know the deal, ask someone who's been through it if you want the truth.

Medical science has failed me miserably, and most derms i have been to know less then i do, which i think is scary. I had to start doing research on alternative treatments for this reason. I have known many ppl with cancer, and other illnesses, and they used both science and nature and a lot of them had great results. As long as you keep your dr informed on what you are doing, i think you will be ok.

I try to keep an open mind about alternative treatments. While i don't think it should get its own space on these boards, i dont think that ppl should be so quick to slam the door on alt treatments b4 doing the research first.

I only go to derms to fill out my prescriptions. If i want to know about my P, i get out the laptop and do the research. I have been covered 80-90% in P for 20 years, and i have seen all the bull. Since i got my computer and a cable modem i have learned more about my P then i ever thought i could.

Keep fighting the good fight,
Joan of Arc

[Eve-Maridy_R]

Note from the Psoriasis Foundation Member Services Coordinator:

Thank you, all, for you responses to this thread. We are having a meeting to discuss this issue tomorrow. I will have more information to share after that meeting.

I just wanted to make sure that you know that we very much appreciate all of your responses, and are taking each and every one of them into consideration.

Sincerely,

Eve-Maridy Rice
Member Services Coordinator
erice@psoriasis.org

[Allie]

Sorry we are creating more work for you guys!!!

[LynneHella]

Hi, Eve-Maridy. I'm dying to know how the meeting went...Can you give us an update? (I don't want to be pushy, but I'm very intersted.)

Thanks!!;)

Lynne

[GitOverIt]

I've been patiently (well somewhat) waiting to hear from you all.....

did you think/hope we would go away :D

[kbradley]

I thought that perhaps the meeting was cancelled...or else the news was too bad to tell us. Please fill us in. I'm all ears. -kiki

[Eve-Maridy_R]

Note from the Psoriasis Foundation Member Services Coordinator:

On behalf of the Psoriasis Foundation, I would like to thank everyone who took the time to respond to this situation. We considered all of the different perspectives and responses we received.

The Psoriasis Foundation believes that the subjects raised in the forums that currently exist and those that would be raised in a special forum for alternative approaches are important and of interest to all community members. Therefore, at this time, we have decided not to create a separate forum for alternative approaches.

Creating a separate forum to "protect" those using alternative approaches takes away from the point of having these message boards—to establish a thriving community where all people come together and express their individual ideas, opinions and treatment experiences. We believe that a separate forum would create division in the community, and we don't want to do that.

In reality, there will always be those people who believe that alternative approaches do not work, and there will also be people who swear by them. We all need to understand that everyone has his or her own views, and they should be respected as much as possible.

Unfortunately, we do not consider it our responsibility to protect you from each other, and it is our goal to "stay out" of the community as much as possible. This is your community, not ours. You have to set your own limits and make your own guidelines for acceptance.

Thank you again for all of your thoughts!

Sincerely,

Eve-Maridy Rice
Member Services Coordinator
erice@psoriasis.org

[LynneHella]

Thank you, Eve-Maridy and all the people at the NPF for your time and thoughtful consideration on this issue. We hear you! I think we are all aware that we all need to be more open-minded and polite.

I really appreciate all that you do. You have all created a very special place for people with P and PA to share thoughts and experiences. Give yourselves a pat on the back!!:D :D Great job!:cool:

Lynne

[GitOverIt]

and the saga continues..........................

Just thought it might be nice for all our newer members to read what has gone down in the past......how we tried to get an "ALTERNATIVE" forum going.

its been one month since we were told that an "ALTERNATIVE" forum woudn't happen at this time.....up til now it's been doing fine and holding its own....I would like to see that it continues to be a place where anyone interested in alternatives can come in and post their "what works for me" treatments, without being hassled.

I re-read through this thread, and found it so enlightening and encouraging for the "ALTERNATE TREATMENTS" that I thought some of you would possibly like to enjoy it again.

[GitOverIt]

newbies (and oldies) this message is very important, I feel...so maybe it would be a good idea to refresh it every once in a while so that the proper perspective is viewed by druggies? no maybe pharmies versus naturals...we each have our own opinion and personaly I'm not interested in changing anyone....

live and let live! :p

[EdR]

Hi Sally,

I'm assuming you're addressing me because I pointed out potentially dangerous advice in a web page you linked to, and provided some links to warnings about Chinese medicinal herbs to a person who is beginning a course of treatment.

Let's re-read the stated rationale of the NPF staff for issuing that advisory:

Recently, however, there seems to be a pattern any time somebody visits the boards with a success story based on alternative therapies: they are immediately attacked and labeled as 'spammers.' It is our concern that this mentality -- this lack of giving people the benefit of the doubt before attacking them -- is driving away new participants in our community who could benefit from the information on the board and who may, in turn, have something useful to share as well.

We are very aware of the large number of 'spammers' that are out there, and we do our best to remove them and keep them out of the boards. But not everyone who has success with alternative approaches is such a person.
In other words, some people were being personally attacked and accused of being spammers when they would bring up success with alternative treatments. This reaction was correctly pointed out to be inappropriate by NPF staff despite the best of intentions by all, and everybody was asked to cool down. It was a good move by the moderators here and the right thing to do.

The situation today is very different. Nobody is personally attacking people who are discussing alternative treatments. There are no disparaging remarks made towards individuals.

The problem seems to be that when an opinion is offered that contradicts the belief system of some people who are using alternative remedies, then that opinion is not welcome, and the person expressing that opinion (most recently me) is urged to abstain. There is a problem with that. Despite the best of intentions, sometimes a person posting a link or advising a treatment regimen might not be aware of a risk associated with that treatment, whether it is alternative or conventional. That is not a crime, and pointing out the risk should not be perceived as a crime or a personal affront. It's just an observation and an opinion. Once it is made, people who read the thread will be aware of that point of view. If someone disagrees then he of she can ignore it or voice disagreement and begin further discussion. That's what discussion boards are for.

I've seen it suggested that people in the alternative thread should "self police". Well, that's fine, but if I see a potential risk or danger in a suggested course of action that hasn't been pointed out, does that mean I have to sit on my hands and wait until an official "representative" of the alternative treatment community here points out the risk? What if someone suggests using the natural non-synthetic remedies of arsenic and mercury, both of which were accepted psoriasis treatments decades ago?

Messages posted on these forums are not private communications. Anybody can read them. Asking someone not to comment about a potential danger - as many people including me do in conventional treatment threads - when the subject is alternative treatments, is a point of view that I admittedly do not understand. What these forums should be about is sharing ideas, information and support. That's what makes it a valuable place to be. Promoting a polarized view of the people who post here, categorizing them as "pharmies" or "druggies" or "naturals" isn't accurate, constructive or helpful, and puts an artificial and unneeded barrier between many of us. I just don't see any other choice but for all of us to continue talk to each other and accept our differing opinions.

[mama]

Ed Very well said! I would like to reiterate that we all need to RESPECT each others opinions and the right we have to express them.

We also ,as far as I'm concerned, have a duty to educate each other. If I come across a bit of info that is important as to the safety of a course of treatment then I should share it. And I would hope that others on this board would do the same for me.

We're here for many differing reasons, but one common reason is to educate ourselves. Education is Power!

[PJ Leary]

Hello Eve, edr, mama, and everyone else,

As you know, if you have been reading this thread, I have been also adding my own thoughts as time goes along. I continue to have the veiws I have expressed thus far, with no changes.

I would like to lend my support to edr's well written response. I agree with everything he said. In fact, I think he expressed many veiws that some of us have posted, and expanded on them eloquently. ( Thanks, ed )

This community needs to continue to be based on some very solid ground in order to thrive. NPF is correct, they cannot attemp to protect us from ourselves, we are not children.

Mutual respect
Concern for others
Willingness to share information
Support for those in need

In an ideal situation, we could include:

Reaching out in mentoring situations
Community education
Continuing to support growing Youth Programs

I am sure there are many other good ideas about what we can all accomplish together instead of devisivness and infighting. I welcome other ideas .

[Kimbercat]

I would hope that edr's information be taken in just the manner it was offered: INFORMATION

I think our point here is to share any information on treatments we are aware of, whether traditional or alternative, so that others can see the information, and do their own research and make their own decisions.

I would be happy to accept warnings or information on any treatment, whether it came from someone who prefers alternative or traditional medicine. We're all here to learn. :)

[GitOverIt]

Torry, mama, ed...... info is what its all about...info for P whether as a drug or alternative means...so whats the problem?:D I hope no one thinks I'm pushing arsenic or mercury?:D
and ed, I'm glad you're reading the posts on "alternative treatments"....we do have some interesting posts and suggestions going on there....I had to go back and reread some to see if there was any fault in them....but I couldn't find anything.
we might not have to caution too much cause most of the things said are pretty safe....when not its always good to hear about them......or have it pointed out.

I still feel that it is a good idea to bump this thread up for newbies every once in a while:cool:

[EdR]

Hi Sally,

You wrote:

I hope no one thinks I'm pushing arsenic or mercury?Of course not intentionally, but since you mention it, I did some more research on traditional Chinese medicines. It seems that there are problems with traditional medicines imported from China containing mercury and lead. Arsenic is a known and accepted ingredient in some traditional medications. Of course arsenic is dispatched at less-than-lethal doses, as it used to be in the United States. That practice ceased in this country when it was discovered that arsenic at even small doses was highly carcinogenic. I was able to find this information at many different resources, but the most detailed discussions were at the web sites of U.S. based licensed practitioners of Chinese medicine. Many of these practitioners warned about using medications imported directly from China. The mercury / lead / heavy metal contamination is claimed to be a manufacturing issue rather originating from any ingredients in the medications. When I have the time, I'll do a follow up in the Chinese medicine thread.

I had to go back and reread some to see if there was any fault in them....but I couldn't find anything.I would not characterize the thread as "bad" or say that there is "fault" in any individual message. Most of us here are not medical professionals, and it's inevitable that we'll sometimes get facts wrong or point to a web site that contains statements that are disputable. I've seen factual mistakes in threads about biologics and other conventional treatments as well. It was the position that no statements could be challenged if the topic was alternative medicine that poses a problem. I would like to suggest that we should all try not to over generalize. Just because you or I might advocate a certain philosophical position about health doesn't mean that every web site that advocates the same position has uniformly good information. You'll find yourself in up over your head if you try to defend every statement on such sites because some of them are untrue and some even pose a danger to the the health of the reader. As an example, it's been correctly pointed out to me that I wasn't clear in a response to you in the alternative thread regarding a linked alternative web site that contained a statement advising people not to use sunblock, so I'm going to follow up on that as well.

I appreciate your point of view. You should be able to share it here and others with differing perspectives should be able to share theirs as well.

[EdR]

Thanks Sally, Torry, PJ, mama and all of the other people who provided feedback on this thread that I inadvertantly plagiarized. I agree with PJ that there are certain principals at stake here that are vital to the continuing health and vitality of the forums. I have no doubt that we'll be able to work them out.