Dr. Nase,
You are certainly passionate about how you feel this support group
should operate. It is admirable. However, I am afraid this board
will never be completely the way you would like it to be. As it has
been pointed out, there are always new people asking the same
questions, and people posting about products that have helped them,
even if you think the products or the way they are promoted are
discreditable. I don't know if there is any way to really control
the whole thing. I am afraid that it is just not completely crystal
clear what causes rosacea, and people respond to different products
and/or treatments in unpredictable ways. Therefore there will always
be a certain amount of confusion in discussions about rosacea,
despite your best efforts to control that.

If you really want a certain focus on the topic of rosacea, I don't
know if there is another way for you to get it than to start your
own board. I know you are very busy, but obviously this is something
you care about a lot. Just a thought.




--- In rosacea-support@yahoogroups.com, "Dr. Geoffrey Nase, PhD"
<drnase1000@h...> wrote:
> Hello Kat,
>
> ....I really like what you wrote below. It is constructive,
> intuitive and makes sense. I think I can add some more points
that
> I think are germane to these various subjects that you brought up.
>
>
> <katwalker@j...> wrote:
> > Without taking any sides here, the role (or non-role) of demodex
> > mites in rosacea symptoms and Demodex Solutions is something
that
> > will continue to come up on this forum.
>
>
>
>
> ....Absolutely. It will come up on any rosacea forum or support
> group. I have never tried to stop them from coming up, but to put
> some type of framework on it because it can easily take over a
board
> and bury rosacea. Sincerely, I would really like Demodex
Solutions
> to perform clinical studies in which they use the base cream and
the
> cream with the anti-demodex ingredients. I say this because the
> base cream is probably as effective just by itself -- sublimed
> sulfur and zinc oxide have been used for four decades to treat
> rosacea. So, this confuses people. Rosacea needs less confusion
> and more focus. Otherwise we are stuck in quicksand for another
> decade. From what I have read on their site and brief notes from
> studies, there is no way that they can tell whether the benefits
are
> from getting rid of the mites or just the sulfur/zinc oxide
actions
> on the skin.
>
>
>
> Newbies will always ask questions and any new study connecting
> demodex mites to rosacea or rosacea-like symptoms will reignite
the
> topic, just like with any other treatmet (e.g., IPL, Accutane). In
> particular, since some people DO experience improvement after
> eliminating demodex mites or after using Demodex Solutions
products,
> it will continue to be a source of curiosity.
>
>
>
>
> ....I agree. If it works and it does not increase flushing then
> please use the product. I have been very open with that
statement.
> But, do not associate that with demodex removal. First, because
one
> cannot due to the lack of solid studies. Second, because that
takes
> research dollars away from studying the heart of rosacea. It has
> already removed approximately $77,000 from the NRS studies. Boy,
> this money could have been spent getting down to the molecular
> level. The genetic disorder. The real beast. Not a critter that
> may cause secondary symptoms in some people because of the
increased
> facial heat. Go after the primary causes....go after the heat
> production dysfunction and there lies the answer.
>
>
>
>
> So, I know it's frustrating to keep going over this, particularly
if
> you think the role of demodex in rosacea is exaggerated, but it's
> not so much because people are doubting the claims made as people
> are either gathering rosacea info for the first time (i.e., they
are
> newbies) or are trying to fit some new piece of info into their
> current conceptualization of this disorder.
> >
> > Also, given that we've well established that everyone is unique
> and everyone responds differently to treatments, I think it is
best,
> on any topic, that the posts try to be along one of these lines:
1)
> > Seeking information/have question, 2) Posting about what has or
> has
> > not worked for you personally (or stating that such and such
seems
> > to have worked for lots of board members),
>
>
>
> ....I agree with you up to this point. There is no way for me to
> explain this easily, so I will try to be constructive and
> considerate. I think the worst thing this group can do is list
> every single thing that has worked for them or heard works for
> others. That sounds like a dictatorship.....right? No, it goes
> straight to the heart of the matter, utter confusion. We had
people
> posting that topical hydrogen peroxide helped their rosacea,
> glycolic acid peels, apple vinegar, DMSO + Fluconazole, CO2
> dermabrasion, 20% salicylic acid treatments, sun tanning, nose
> strips, suction pore removers, malic acid treatments, citric acid
> topicals, benzoyl peroxide, cryosurgery (freezing of the skin),
> topical nizoral shampoo on the face, cauterizing blood vessels
with
> an old fashion needle cauterizer that is more apt to cause
scarring
> then remove vessels, weekly pore removal with home made
instruments,
> OTC mite cream and crabs lotion, herpes cream, and the list goes
on
> and on. None of the above are acceptable treatments by the
current
> medical standards primarily for safety and avoidance of skin
> damage. So, somehow (and I dont have the answer), we must allow
> subjects to get posted and then constructively put a yield sign up
> or allow for short debates. I try to do everything constructively
> and I do put up yield signs.
>
> Andrew had an excellent Rosacea Knowledge Support Board going for
> quite a while until I stepped aside due to one member and there
was
> then a lack of focus and forward movement. Everyone was throwing
> out everything in the kitchen sink including toothpaste on their
> face and it slowly came to a halt several months after focus was
> gone and common sense left the building.
>
>
>
>
>
>
> and 3) Posting about new studies. While it's justified to say that
> Demodex Solutions or any other company is making claims beyond the
> scope of its product,
>
>
> ....If one were to make these same claims in the science or
medical
> field, they would be literally thrown out the door. None of their
> material would ever get published. When you start talking about
> near cure rates, common sense has to step in. Many of the people
> that post within the first week that this cream is helping are
> emailing me in two months to inquire why it is now hurting their
> faces or not helping any more.........there are a lot of premature
> reports. With rosacea and its tendency to wax and wane
independent
> of intervention, one should really wait at least 6 to 9 months to
> report on a product. Delayed irritant dermatitis, rosacea
> dermatitis and reactive flushing can start to take place after 60
to
> 90 days of a wonderful treatment because the product has been
> peeling away their skin and now they are supersensitive to all
> environmental triggers.
>
>
> ++++++++++++ You know, I feel a little bit responsible for those
> three young ladies who have corneal scarring from Dave Flemmings
> DMSO + Fluconazole cure. I was just diagnosed with cancer at the
> time and did not have the energy to debate with Dave and his 17
page
> demeaning retorts. I should have stepped in sooner. I should
have
> put up a strong yield sign and just sat back and taken the
shelling
> by Dave. But, I did nothing. 2 ladies have lost over 50% of
their
> vision and the other is undergoing surgery soon because the DMSO
> burned right through her corneas. Shouldn't someone raise their
> hands and say "Hey wait a minute, lets think about this", or "Hey,
> the first thing anyone sees on the search engines is a cure for
acne
> rosacea (wrong term by the way) by getting rid of demodex".
Rosacea
> has lacked guidance by the medical community, has severely lacked
> nonprofit organizations for 25 years, has no doctor forum for
input,
> and has been stamped a cute cosmetic disorder. Where are we
going?
> What are we doing? Is anybody doing anything? Shouldn't someone
be
> the voice of reason? Shouldn't someone publish in dermatology
> articles and give them the same constructive criticism at his own
> expense?
>
>
>
> there also needs to be some recognition that the products have
> worked for some people (even if what about it specifically is
> working for the person is unknown).
> >
> > Personally, I'm sick of all the IPL questions just because they
> > don't apply to me currently, but obviously these are important
to
> > those asking them. I either just don't read them or skim them.
> >
> > -Kat