A message from Admin

Posted Mon 22 Jan 2024 09.45 by psoriasis association (admin)Mod

Hi All, We just wanted to pop a message in the forums to let everyone know that we are aware of the increased spam messages on different topics of the forums. We do have certain words blocked and a lot of posts have to come through to us before being posted to the forums, but unfortunately, a few have slipped through. We have made our security tighter and the forums are monitored between 9-5 Monday - Friday, so we try our best to stay on top of it. The forums are a safe place for people to share experiences and we have to apologise if anyone has ever felt like the spam messages have stopped them from doing this. We are aware of it. Please continue to use the forums as usual and thank you for reporting any content that you are unsure of. Many thanks, Georgia, The Psoriasis Association

Posted Mon 22 Jan 2024 11.47 by Acrazydoglady

thank you Georgia!

Posted Tue 23 Jan 2024 11.37 by Nelly

Thanks Georgia

Posted Thu 1 Feb 2024 11.26 by Acrazydoglady

hi - if I wanted to contact a Mod - how can I do so?! All I want to say is I think we should remove the dislike button?! This site needs to be promoted as & be positive & I can't believe I've seen so many dislikes against such a variety of comments, this is the last thing we need in our lives - negativity, when we're faced with so much negativity in the outside world! If you don't like something scroll on & have a nice day! For example, I now see someone has disliked my Akkermansia post - someone dislikes that I've managed to get 97% clear 4 years later by being a human guinea pig - how nasty is that?! I was wanting this to resonate with anyone else who thought like this, because we all know that works for one doesn't work for another and some of us are more open to trialling things than others are! If this means remove the like button too, so be it, as a more personal thank you by someone leaving a positive comment means way more. What do you think?! Food for thought!!

Posted Thu 1 Feb 2024 17.37 by lizziep (edited Thu 1 Feb 2024 17.40 by lizziep)

Interesting acrazydoglady - we don't get many dislikes - I agree, but we were inundated with them - and unpleasant posts, when shareholders of Axisbiotix flooded the site - some of them were also users, but not many - they took all sorts of aliases and spent months disliking anyone who challenged them I did notice that you dismissed Axisbiotix in one of your posts - so you may have got on the wrong side of that bunch! If you want to contact the psoriasis moderator, there is an email address at the top of the page.

Posted Thu 1 Feb 2024 20.17 by Acrazydoglady

thank you Lizzie - & wow that's just plain awful!! You know what kindness is our superpower - cape-able of changing the world!!

Posted Fri 2 Feb 2024 08.48 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

I've seen this elsewhere on medical forums when people are trying alternative remedies which aren't backed by research evidence. Some people (and I used to be one of them) will only "trust the science". And some take that further by attacking people trying alternatives. There is a fine line where criticism is important because it might protect people (from a dangerous treatment, or wasting their money on something known not to work) but that should be reasoned criticism, not just a thumbs down. And as to alternatives, increasingly new treatments come from traditional or folk remedies. My partner saw an NHS rheumatology consultant recently who said she should continue with turmeric, ginger, and garlic supplements if they work for her. I also wonder about one of our favourite drugs - ciclosporin - which was derived from a fungus. How did the researchers know it might help? You have to imagine it had been used as a folk remedy for years...

Posted Fri 2 Feb 2024 10.55 by psoriasis association (admin)Mod

Hi all, Thank you for your messages. We understand that it can be discouraging to receive a dislike on your post, especially if it has taken a lot to post on the forums and if it something quite personal. The intention of the like and dislike buttons is so that out forums are interactive and engaging. But we take your points into consideration and it is something that we will think about going forward. We will monitor the buttons and have a discussion about them. We also understand that the posts about certain supplements and products can come across as spam. We do monitor these and do not allow sales of any kind on the forums. Again, if you are concerned about any posts, please report them. If you have any other issues, please email us at mail@psoriasis-association.org.uk Thank you, Georgia Psoriasis Association

Posted Fri 2 Feb 2024 11.02 by lizziep

Thanks, Georgia - I did wonder if the names of the liker/dislker might be shown up as it is in Facebook - although the names are aliases, it can be useful to see if it is the same person all the time.

Posted Fri 2 Feb 2024 12.09 by Acrazydoglady

Thanks Georgia - hopefully twas meant to be a like as I hit things faster than what my internet speed is going & end up doing the completely the wrong thing!! It didn't bother me, but it would have bothered my 20+ year old self, as I'd never have posted again. I soo understand, as we are soo seen as cash cows! @kiloran soo agree & appreciate your honesty! I'm convinced some of us are not cut out for modern day foodstuffs & medicines without consequences! There just aren't enough psoriasis research developments in my eyes.. & no we don't want another USD1300 Tapinarof cream! 🤔

Posted Fri 2 Feb 2024 14.17 by Acrazydoglady

@kiloran - I also forgot to say I'm going to do a post on why I've chosen to be a human guinea pig 30 years after I spent a vast fortune on lotions & potions (remember the internet was just starting - ha ha!!) & we can continue this conversation there if you so choose....

Posted Thu 15 Feb 2024 04.54 by OhNo_NotAgain?

"Posted Fri 2 Feb 2024 11.02 by lizziep Thanks, Georgia - I did wonder if the names of the liker/dislker might be shown up as it is in Facebook - although the names are aliases, it can be useful to see if it is the same person all the time." I would expect that the Modertors can see who posted the likes or dislikes. I do not actually see any value to users knowing who posted the like or dislike, in fact I suspect that it COULD possibly lead to vendettas by some users if that was made visible to all.

Posted Thu 15 Feb 2024 11.41 by lizziep

Yes OhNo_NotAgain? - that's a fair point.

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