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The weird forum called Psoriasisclub

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The weird forum called Psoriasisclub
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,593
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#1
Fri-11-02-2022, 20:31 PM
In fact the question is: “Why has Psoriasisclub the nature that we see?”

I think there are a lot of factors that play a role in the nature of Psoriasisclub.
I visit other forums some times, of many kinds and types, e.g. photography, motorcycles, sometimes a technical forum though they are hard to understand, etcetera.
They are mostly helpful also, but have a different atmosphere.

Sometimes I visit facebook psoriasis sites, facebook is kind of a fehtherlight streaming forum with a very low span of attention. And over there I read a lot of nonsense and weird idea on psoriasis. There is a forum of the dutch association, where I sometimes post. They are reasonably good, but there is not so much activity.

So that winds back to partly what Forest said about psoriasisclub concerning adverts and integrity. But there is more to psoriasisclub.
There is knowledge and experience over here. The members together have gathered immense experience, without forcing that experience to others. They tell other members with questions about their personal experiences with medication or show the way to members that do have experience.
It is a factor that is greatly missed by industry.  Yes there is scientific research and statistical proof, but to gain real insight you must dive in to personal experiences.

The strong point is that psoriasisclub has grown into a group of knowledged and friendly friends, spread out over the world, who have never met each other, mostly have never seen each other, but still are friends.

The club has, thanks to Fred, a number of simple rules where above all the rule is to respect each other, and for some reason that really works very well with psoriasisclub.

The club also thanks to Fred, has always the newest news facts about psoriasis and Psoriatic Arthritis. I have never seen that anywhere else. I even know that e.g. in the Netherlands the medical inspections (IGJ) has the weird philosophy that this kind of news should not given to patient as not to give them too much hope. Now that is a weird philosophy.  Big Grin

The club also has a lot of humour and interesse in each other’s life outside the psoriasis life. Half of what is posted is not about psoriasis but about a lot of other things in life, where we all have our opinions about, sometimes very different and the way that we discuss that has already learnt me lot of things and sometimes changed my view to things that I was sure of.

And last but not least the club has a great Staff…  Whistle  Kind of weird combination… a cow girl from the States, a fossil seeking gentleman from England, an English speaking hermit living unfindable in the country of France and a Dutch motorcycle girl dancing through life.

But…. It all works.  Big Grin  and I bet this is not all that can be said about psoriasisclub.
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,201
Threads: 3,902
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#2
Fri-11-02-2022, 21:02 PM
Nice feedback Caroline, it sums the place up well. Big Grin
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Kat Offline
Take my advice; I don't use it anyway.

100 + Member I Just Cant Stop !
Posts: 9,829
Threads: 84
Joined: Aug 2014
Gender: Female
Location: GA
Psoriasis Score: 3
Treatment: Clobetasol Topical
#3
Fri-11-02-2022, 22:26 PM
Yes it does
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,201
Threads: 3,902
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#4
Fri-11-02-2022, 22:31 PM
(Fri-11-02-2022, 22:26 PM)Kat Wrote: Yes it does

shake
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#5
Sat-12-02-2022, 13:15 PM
Brilliantly written Caroline and very accurate in the description . The forum is unique and I have visited other psoriasis forums in the past, but have soon left them when I read some of the less than constructive posts and lack of respect to new members with what seem like simple questions whilst in them
. Here we are encouraged to post to keep the forum active and attractive to new members
There's never a request for contributions to the running of the club and there are no outside influences to influence the direction the club goes and spammers rarely get past the forum guards
It is a different kind of forum with psoriasis its main purpose but many friendships have formed and we can talk about anything in the off topic section and know a lot about members lives away from psoriasis .
It's a fun place to be and probably the most supportive group I have ever joined
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,201
Threads: 3,902
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#6
Sat-12-02-2022, 13:46 PM
(Sat-12-02-2022, 13:15 PM)jiml Wrote: It's a fun place to be and probably the most supportive group I have ever joined

Ad with the benefits of a bar and coffee shop. What more could one want.
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#7
Sat-12-02-2022, 14:22 PM
(Sat-12-02-2022, 13:46 PM)Fred Wrote:
(Sat-12-02-2022, 13:15 PM)jiml Wrote: It's a fun place to be and probably the most supportive group I have ever joined

Ad with the benefits of a bar and coffee shop. What more could one want.
Indeed the bar and Coffee shop are always great meeting places to relax
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D Foster Offline
“You only live once, but if you do it right, once is enough.”

100 + Member I Just Cant Stop !
Posts: 25,286
Threads: 17
Joined: Dec 2014
Gender: Male
Location: East Yorkshire
Treatment: Stelara 90mg and G&T
#8
Sun-13-02-2022, 11:47 AM
It's unique because somehow a group of misfits have joined together and get on , have things in common , started and run by Fred whom is more unique than most. Everyone gets on and have mutual respect to one another and because they are from all over the world and Norfolk it makes a great forum.
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,201
Threads: 3,902
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#9
Sun-13-02-2022, 12:44 PM
(Sun-13-02-2022, 11:47 AM)D Foster Wrote: It's unique because somehow a group of misfits have joined together and get on

What shame the world can't do the same.

(Sun-13-02-2022, 11:47 AM)D Foster Wrote: all over the world and Norfolk

85
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Caroline Offline Author
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,593
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#10
Sun-13-02-2022, 21:17 PM
(Sun-13-02-2022, 12:44 PM)Fred Wrote:
(Sun-13-02-2022, 11:47 AM)D Foster Wrote: all over the world and Norfolk

85

Big Grin Big Grin Snigger
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