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FlakeHQ Interviews:

Ed Anderson

Online Psoriasis Community Pioneer

Interviewed by Ed Dewke  
in October, 2005

When you Google “psoriasis,” among the top ten citations is a famous psoriasis web site called the “Psoriasis Hall of PShame.”  A laid-back Californian named Ed Anderson created this site; it’s been around for a long time.

If you are serious about online research into psoriasis or other skin diseases, there is this incredible one-page site that contains “search shortcuts” to all the best online resources.  It’s called the “Skin Page.”  You can find stuff in seconds that might otherwise require hours of surfing.  Ed Anderson put that page together.

Years before the National Psoriasis Foundation launched its now-famous message boards for people who flake, and before the plethora of other online support sites for psoriatics came into being, there was the newsgroup with the difficult-to pronounce title “alt.support.skin-diseases.psoriasis.”  Ed Anderson didn’t found it, but he nurtured it from infancy into the new millennia.  (His name will forever be linked to it.)

When I started FlakeHQ in 1996, Ed Anderson tapped me on the shoulder (figuratively speaking) and gave me a number of technical tips to prevent my output from being terribly sophomoric.  I remember this, “Nobody really uses frames, Ed.  It makes hyperlinking to your pages a nightmare for the rest of us....”  I immediately ditched my frame-heavy site design.  Sometime later, this from Ed Anderson:  “There are ways to put banners and navigation buttons on your pages without recreating them for every page....”  I right away learned how to do that.

For as long as there are people with psoriasis, there will be a short list of folks who stand out as pioneers on the Internet. People who led in making this remarkable communications technology a true "home" for flakers.  Ed Anderson’s place on that list is assured.  Ed made me very happy when he agreed to this interview for our final updating of FlakeHQ in 2005.  -Ed (Dewke)

*****

Dewke:  When did you start alt.support.skin-diseases.psoriasis, and why?

Anderson:  I was there when it began in early 1995, but credit for actually sending the messages that started the newsgroup goes to Steve Krause. 'Krauster' wrote up his story online, now archived by Kim Malo, keeper of the PsoriasisFAQ site.

My involvement starts as his story leaves off. Over a few months, I had put out some Usenet posts looking for anyone interested in starting up a psoriasis support group, and I routinely scanned for any mention of psoriasis. This was before the DejaNews (now Google Groups) archive came online, and I really did scan the raw Usenet feed for keywords.

There was a near total vacuum of online psoriasis info at the time. Usenet feeds were also rather spotty, since most sites only carried the topics they had an interest in, and many were not well connected. The first messages I found were the ruckus over the creation of the failed alt.support.psoriasis group, and then what is now the current group, which had also been deleted.

I contacted the frustrated Krauster, who turned out to live not far from me (and is now a regular dinner buddy). We thought it best to try a more official approach, and I wrote up a group charter that would hopefully overcome all previous objections.  See: http://pinch.com/skin/docs/newsgroup/

What we discovered is that herding cats would be easier than getting any consensus on Usenet. Part of that was my mistakenly grand plan of naming an alt.support.disease.skin.psoriasis hierarchy, which would have allowed for many other related support groups. Despite good support, it was nixed due to news-admin complaints that we would then have the confusion of three psoriasis support groups. So, I rewrote the charter to back the existing group that had the least complaints: alt.support.skin-diseases.psoriasis.

Like Krauster, I sent out alt.support.skin-diseases.psoriasis newsgroup creation messages, but included the charter and also a more general alt.support.skin-diseases group, and none were contested. Incidentally, once I announced the success of the effort in the new group, I received what I believe was the first "flame" there, possibly for having bored some to tears with the tedious details (as I probably have here).

Why the newsgroup? The charter is still online and contains the original rationale.  Here's an essential quote from it: 

The phenomenal amount of money that is spent on aggressively marketed shampoos and skin care products shows how important it is to make accurate information easily available and to provide a forum for discussion.

In 1995, there really wasn't anywhere to go online for info on psoriasis, much less to find interactive support. I had found out about the National Psoriasis Foundation, and contacted them about putting up a web site. Yet another Ed — Ed Reiss — also had the same idea. Reiss developed and maintained an excellent online resource at psoriasis.org for the Foundation. Still, there was an ongoing need for peer support.

 

Dewke: What surprises did you encounter along the way?  How would you describe alt.support.skin-diseases.psoriasis today?

Anderson:  What I failed to anticipate was the commercial spam phenomenon, which in my opinion has pretty much destroyed the envisioned potential of the Internet.  I hadn't imagined that promoters would attempt to take over the forum for their own agenda.   

The other surprise was how the nature of the newsgroup changed when some of the big service providers first opened the floodgates to millions of new users to Usenet.

Historically, Usenet messages sometimes took a long time to propagate. Since answers didn't always come quickly, the responses were usually well thought out. There wasn't much need for a moderator to keep things on track.

As the interaction became more rapid-fire, somewhat like AOL chat rooms, that self-moderation seemed to evaporate. Anonymity became the rule to avoid getting spammed, and the typical response was often a series of emotional barbs.  Since there was really no way to keep that in check, some rebellious and even abusive types often took glee in creating general havoc.

Rather than clogging the newsgroup with even more debates over disruptive behavior, I wrote up a "newsgroup guide" with support from several friends. The guide was only useful to those who wanted to avoid conflict, of course. Though it had some consensus, any anti-authoritarians took it as a new cause for rebellion.

The "flame wars" became so intense, at times, that there were multiple attempts to form splinter groups over controversial topics (like Skin-Cap). In one or two incidents, law enforcement authorities got involved — like when an online aggressor turned out to be a real world stalker.

I'm sorry to say that as more people arrived with irrational agendas, many very supportive contributors to the group were eventually driven away. My own "authoritative" presence was controversial enough that any post I made seemed to reopen old wounds among those with a grudge, so I too bowed out.

I spent some time working with Ed Reiss on his PsorHeads.com site, which ran a forum that was moderated by selected members. I believe the quick success of that moderated forum became a model for the Psoriasis Foundation forums. After the Foundation forums came online and had much better traffic, the entire PsorHeads site content was lost by a hard disk crash, so we never rekindled it.

Today, the Usenet psoriasis group persists and has many regular members. It also has regular kooks and trolls, and spam. Some diehards still revisit and contribute, but I think the general quality of the discussions is nothing like it once was. Still, the typical internet user is more savvy now too, and most know to be wary of scammers and "true believers."

 

 

Dewke:  How can we use alt.support.skin-diseases.psoriasis as an information resource?

Anderson:  I've always been a big fan of search engines, and using Google is an excellent way to mine the newsgroup archives for info on just about any topic related to psoriasis. It's amazing how many good responses there have been over the years, and a search engine will give instant results. If one is looking for truly obscure information, then asking on Usenet probably won't provide the best answers, anyway.

 

Dewke:  Web-based forums (a.k.a. "boards," "message boards," "discussion groups" ...) for psoriatics have become numerous.  alt.support.skin-diseases.psoriasis is based on USENET technology — an Internet application that is separate from the World Wide Web (and pre-dates it).  For those among us who entered the online world late, please tell us what we need — and what we need to know — to  participate in alt.support.skin-diseases.psoriasis.

Anderson:  For posting, one easy method is to use your regular web browser with a web site that acts as a gateway to Usenet, like Google Groups. Google still offers free personal accounts that allow anonymous Usenet posting. That's probably the safest and simplest way to read and post. AOL also still supports Usenet through their interface software.

For those who want the full Usenet experience and quicker response, a separate newsreader program is run on their computer. Some email programs, like Mozilla Thunderbird and Outlook, also handle Usenet newsgroups. No special account is needed, but a reliable news feed is a must. It's also known as an NNTP news server. Good internet service providers usually run a free news feed for their customers. Small services that run a free server may not carry the group except by request, and even then it may not get all the messages. There are several sites that specialize in Usenet feeds with very good coverage of all active groups. I wrote up a web page to explain most of this in some detail, though it may be a bit stale:  See: http://pinch.com/skin/newsfeed.html

For best results, definitely read Kim's Psoriasis FAQ page before jumping into the group with a post. Then lather, rinse, and repeat.

It's really too bad that Usenet has fallen into total anarchy. It was such a great success because it allows universal access to thousands of specific newsgroup subjects, yet keeps a lean, fast text interface with each topic and discussion thread nicely organized into a hierarchy. It's usually very obvious who is responding to which post. It's distributed across many servers so it's immune to most outages, and very expandable. One downside is that the volume can be so huge, messages sometimes expire within a day to make room for new ones. That's easily fixed by banning all binary attachments, or archiving just the content worth keeping.

Personally, I'd suggest joining a moderated web forum instead. Pick carefully, though.  The National Psoriasis Foundation “message boards” are the most popular, but there are several small friendly groups, and email lists, too. Beware of sites that are just looking for traffic for promotion, and are primarily for mining contact info. For example, the Skin-Cap scammers have several fake "support" sites online, but there are big pharmaceutical companies doing something similar. They set up a forum and get member email addresses, but then fail to actually provide ongoing human support.

It's a sad fact that it takes an active moderator (or many volunteer moderators) to keep any open forum from being disrupted. Some of the instant gratification of Usenet and mailing lists may be lost when there's a delayed broadcast, but I think that actually tends to improve the quality of the messages. Your FlakeHQ format would probably be classed as a fully moderated forum of sorts, and I think that's part of its success.

Some new technology will hopefully appear that provides the best of these forum methods. Wikipedia.org is a good example of a successful collaborative environment. It may someday be able to handle active support groups, too.

 

Dewke:  If you compare the online psoriasis community to a house — with every forum, web site and email list as a room — I’d characterize the Psoriasis Hall of PShame as the “mud room.”  Where I grew up, all the dirt and mud we drug in from outside was supposed to be left with our shoes in the mud room, right off the back door.  All the trash we generated inside was supposed to be carried to the mud room to await further hauling to the curb. 

You define the Psoriasis Hall of PShame as a site devoted to Internet scams and deceptions that target people with psoriasis.  Though many of us think this, you may not be told frequently enough that creating the Hall of PShame was probably the single most courageous act committed in "our house" in our first online decade.  I know that act of courage has cost you.  Why did you do it?

Anderson:  It was all centered around the Usenet group. As more people got on the net, we were soon visited by all sorts of promoters trying to turn the newsgroup into their marketing venue.  It must have appeared to them like an untapped resource, full of desperate people looking for any cure.

Even though I didn't personally give birth to the newsgroup, I was maybe a bit paternalistic about the little community. Those who didn't appreciate that overprotective attitude saw me in a patronizing role, which I tried to avoid. Actually, one of the regulars eloquently characterized my status as "avuncular." I rather preferred being seen as a benign "Uncle Ed," ready to offer whatever helpful advice I could.

With new members appearing all the time, and messages lasting no more than a few days on many servers, many of the same questions would get asked by new arrivals. Rather than repeating answers, and hoping to provide a broader perspective than just my own response, I set up an archive of the newsgroup, and a "skinny" search script that would show previous answers. A search link could be easily shared in a newsgroup message by anyone. Several of us were always researching answers, and the script was pretty handy.

Well, each time a promoter reappeared, it seemed to trigger a rash of responses, which was often more disruptive than the promotion itself. Even providing a search link to past responses would result in mostly a jumble of insults, which wasn't very informative. So, the Hall of Pshame began as a spin-off of the search tools on the Skin Page, partly as a way of avoiding repetition, and also as a deterrent to new promoters.

I like the mud room analogy, but the Hall o' Pshame was never really intended to be comprehensive enough to keep all the mud out of the house. To mix another metaphor — it was maybe like putting shrunken heads on spikes around the tribal village to make poachers think twice about tromping through our sacred ground.

 Still, I stuck to the facts and tried to act more as a reporter than a witchdoctor. I suspect I'm just more stubborn than courageous. When the net sprung forth, most of the early crowd didn't see any need for anonymity. I used my real name when posting, and have even kept the same email address in case anyone needed to follow up in private. I don't recommend that nowadays, as my spam load has peaked at 11,000 messages per day! That refusal to admit defeat and hide my identity has also set me up for repeated threats of libel lawsuits for my web page. None of the threats has ever gone past the cartoony huff and puff stage, but I really do have to think about the legal aspects like a news reporter would.

 

Dewke:  I'm sure you are "tipped" regularly about new places and activities on the net that are questionable.  What makes you decide NOT TO include some of these in the Hall of PShame?

Anderson:  The honor has been reserved mainly for those promoters who prey on support forums. I'm not active on Usenet now, but I do consider adding an entry when I get a tip about ongoing forum abuse.   

There's a broad enough set of examples plastered in the hall that it's almost a blueprint for new psoriasis scams. So, anyone who has seen the page should already have a good idea of what to be wary of in terms of promotions. There are so many similar scams out there on the web, that it would be futile trying to list them. Many hucksters even send me spams and request links in the Hall. Apparently there's no such thing as bad press, so I'm reluctant to raise the profile of obscure scams.

There was a time that the FDA and FTC could have put a damper on such activity, and in 1999 I made a presentation on an FDA panel with some ideas. That was a real disappointment. If I'd been less naive about the way our government comes to decisions, I'm sure I could have spent the time more constructively.

With so many promoters now straddling an ethical grey area, it's difficult to call some scams without inviting a libel suit. Many of the ineffective goopy treatments on the market have learned the trick of including either of the only two OTC drug ingredients, coal tar or salicylic acid, which allow them to make claims for treating psoriasis.

Other dubious treatments are relatively harmless and have an enthusiastic following. Pagano, for instance, meets the requirement of having repeatedly disrupted forums with promotions of his book, and his pseudo-scientifically nebulous regimen raises the hackles of those who are more rationally minded, causing endless debates. Indoctrinating him into the Psoriasis Hall of Pshame was always tempting, but more likely to result in an endless stream of nastygrams from true believers, no matter how accurate the review.

If anyone really wants to put their faith in mystical treatments, then they're unlikely to be swayed by any reasoned advice I might offer anyway.

Dave's Psoriasis Site was a fairly comprehensive, skeptical, and often insightful, commentary on dozens of different alternative treatment claims.  Sadly, psorsite.com was difficult to maintain, and now can only be found in dusty archives. Maintenance on my own site is (obviously) minimal, so it's no extra effort to leave it running.

 

Dewke:  You mentioned the Skin Page —  http://www.pinch.com/skin — and I’m embarrassed to have let you beat me to the punch.  Any serious researcher using the Internet to investigate skin diseases is, or should be, aware of this page, which is a list of search tool shortcuts.  I like to think of it as my Cliff Notes to Finding Facts Fast About Psoriasis (and other things!).  It’s another one of your contributions to our online community that keeps on giving.

Anderson:  I do still keep the Skin Page going, but it hasn’t changed much in the last few years.  Ed Reiss has just revealed the latest incarnation of his Psoriasis Online Toolbox — http://pso.webwillow.com/ — which is very current, and more specific to psoriasis.

 

Dewke:  In the early 1990s I came across a book, an anthology of articles probably assembled for academic purposes, titled The Society of Text, edited by Edward Barrett (1989).  In my own old college patois, we would have said  "this book talks to death the concepts of hypertext, hypermedia and  hyperlinking."  I bring it up now for obvious reasons: the Psoriasis Hall of PShame and the Skin Page are exemplary examples of hypertext. 

I picked three articles (out of the 22 currently in the Hall) and did the math: About 3% of the words you use are also hyperlinks to more information.  What this means, practically speaking, it that your words are the "tip of an iceberg."  For those inclined to click, the Psoriasis Hall of PShame is a gateway to a wealth of information that invariably strengthens your arguments. Please share with us a little bit about your process of creating these articles.

Anderson:  Wow, I had no idea that anyone ever looked so closely at my web content, or saw much more than their own topics of interest.

Most of the items were created ad-hoc, on the fly, as an alternative to writing a post to the newsgroup. As some accused, maybe I was obsessed in some codependent way with providing the best advice I could to questions in the newsgroup. Since I had the ability, I felt I had some responsibility to share it with those who didn't. I have always tended to research things that tickled my curiosity, and the web can make an addict of someone with that bent. I'll refrain from digging up a link to the DSM entry for such a neurosis, but dropping hyperlinks is simply a way of saving others time, should they wish to pursue the research on their own. My newsgroup messages were riddled with web addresses, even though the words couldn't be hyperlinked.

Putting up a web page can be so much cleaner because the links are hidden. Strange how that doesn't work well for personal messages that get moved around the net and archived. It's too bad that the web browser wars forced html into email where it doesn't belong. What a mess, with some messages taking up 50 kilobytes for a one line message. Usenet could have been hobbled by that feature, too, if the regular users had allowed it.

 

Dewke:  Please tell us a little bit about your own psoriasis.  How long have you been afflicted?  Severity?  What treatments/meds have you tried?

Anderson:  I never thought it mattered enough to describe my psoriasis on my own web site, but it's no secret. I've discussed it in various aspects over many Usenet posts. Anyone who wants details can Google me up.

I'm a late bloomer. Since my teen years, I had a problem with dandruff, and then seborrhea. The psoriasis started as plaques on elbows and knees 15 years ago at around age 35. Getting a differential diagnosis was tricky, even as I showed classic spreading psoriasis lesions. I've been keeping it under fairly good control since I fell into a regular maintenance regimen, which might explain why it now looks more like guttate than plaque P. Remissions are rare. Trying to clear all the lesions seems to cause new spots to erupt, to be joined by familiar ones in a relapse. So, I settle for living with it, mostly under control but with unpredictable flares.

There's not much point in trying to list all the things I've tried. I won't claim I've tried everything, but I've used myself as a guinea pig for some concoctions that really would curl your hair. I never recommend that anyone else take such risks — it's too easy to make a stupid mistake. At the same time, I feel that an informed person should be free to experiment at whatever risk level they're comfortable with.

I've dabbled quite a bit with adding and eliminating different foods from my diet, trying to keep track and watch for responses. As I've become more aware of what I eat, my diet has improved a lot. Still, I haven't found any good correlation to the psoriasis. The best responses I recall were with a regular intake of salmon, and cold pressed flax seed oil.

Maybe I should just describe my personal regimen, since it has worked for me for several years now. Every other night, I take a long soak in a hot bath. That keeps the skin exfoliated and prepared for my topicals. I no longer take showers, and soap dries my skin which can make it more oily. The only soap I use is Nizoral shampoo on my hair.

I add about a pound of table salt per bath, and keep the temp between 99 and 105. Higher temperatures do bring the blood to the skin surface, but that's a brief effect. Over an hour-long bath, I can put a dent in my reading stack, and it's so relaxing that it's almost like meditation.

Right after drying off, I apply a thin layer of ointment all over that acts as a barrier moisturizer. It's taken up by the skin overnight, good until the next bath. I've found an active ingredient for the ointment that's available only by prescription, but used at low doses appears to be perfectly safe and innocuous.

I use low dose anthralin (0.1%) in petrolatum (Vaseline) that I compound myself. I've gotten a prescription and had a pharmacist prepare it just to show that it's not difficult, but that's an expensive route. The ingredients are very cheap. It's a prescription drug because at high concentrations it can irritate the skin almost like a sunburn. Unfortunately, the only products out on the market use high concentrations. Anthralin actually has herbal origins, and is one of the earliest recognized psoriasis treatments.

I apply it sparingly all over. It doesn't stain skin or clothing at that low dose. It's invisible and odorless. I'd prefer to use coconut oil instead of petrolatum, but silky saturated oils tend to block up my pores and cause occasional acne. Actually, because of that, I now use another prescription drug for my face. It's tacrolimus 0.1% (Protopic). Tacrolimus is reportedly useful for seborrhea, and it only seems to work on my face and groin area. My anthralin concoction works fine in those areas, too, but does tend to oxidize the pores causing blackheads, while tacrolimus doesn't.

When I do get a flare, I add UVB in the morning, and that often will cause a quick clearing. There appears to be something synergistic about anthralin and UVB. Researching it, I found a study where hundreds of patients were kept clear using almost the same regimen I just described, with an apparently near 100% success rate over years of follow up. The study was discounted when others tested one aspect or another and found lower success rates. I think it's the combination of exfoliation, regular low dose anthralin, and occasional maintenance UVB that's successful.

I haven't needed to rotate to other therapies for quite a while. I've never resorted to systemic treatments, but joint problems may be catching up with me as I creep past 50. I'm hoping the new biologics will be safe and available if and when I need them.

 

Dewke:  How has being psoriatic affected your life?

Anderson:  I don't think it's impacted any of my relationships so far. I'm pretty open about it, as you can imagine, and I think others will reflect our own feelings about the disease. I don't like making strangers nervous when I'm sporting lesions, but I don't go to extremes to cover up, either.

The biggest effect has been my involvement with the psoriasis community.

 

Dewke:  Obviously you are an advocate for group communications among people with psoriasis.  In addition to your projects and accomplishments on our behalf on-line, you have been active in a Bay area psoriasis group. What do you get out of the support group experience?  Would you encourage others to try it?

Anderson:  I did help to organize an SF Bay Area group we called BAPSONET, but never took a lead role. We no longer have public meetings, but a few of us still gather for friendly dinners. I suppose what I got most from those meetings was some satisfaction in helping others to find all the resources that are available to them. It seemed that much of my involvement was relaying info about what was happening in the online support group.

People who attended our meetings often had very severe psoriasis, and their stories could truly be heartbreaking. What has made an impression on me, both in person and online, is how the folks who are impacted the most are often the best role models for resolve and self esteem. Dealing with a challenging disease can apparently bring out the best in people. 

Speaking of good people, there's now a very active local SF Bay Area/Peninsula Psoriasis Support Network group run by three marvelous women. It's like seeing a a whole new generation of psoriasis support. The online resources aren't a novelty anymore, and these folks are proactive in effecting change. They're lobbying and organizing, making documentaries, and hosting great parties.

I wholeheartedly encourage others to try joining such a community. There's something unique that happens in taking part. I suppose it's a form of unconditional acceptance, from others who really know what it's like to live with psoriasis. The discussion doesn't even have to be on topic, but having psoriasis in common somehow helps people be themselves without being self-conscious.

 

Dewke:  Thanks for your time, Ed.  And for alt.support.skin-diseases.psoriasis, the Skin Page and the Psoriasis Hall of PShame.  You’ve made them sound like natural byproducts of an enthused cyber-flaker, but I know better and I think most FlakeHQ readers do, too.  Your work on the Internet for everyone with psoriasis was seminal and has become foundational.  I have only one more question: What do you do for a living?

Anderson:  I had some fleeting success as an engineer with a couple of startup companies doing digital imaging.  I had some unique inventions, and I took a sabbatical to start my own company.  Well, I may be too easily distracted to be a good entrepreneur.  I ended up spending time doing more satisfying volunteer work.  Nowadays, I eke out enough consulting work to spend more time developing new digital imaging algorithms.

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