Non biased psoriasis information is winning

[Fred]

After my report about Psoriasis 360 closing it's FB site and my thread Should Drug Manufacturers run help websites for psoriasis? I'm pleased to see the following information I have found today.

After Facebook's decision on August 15 to enforce open walls on the site's pharma pages, companies had two options: close down their pages altogether, or let the public openly comment on their products.

FDA issues may deter drugmakers from engaging in social media.

The firm was the latest among several drugmakers to do so following the social network's decision to enforce rules requiring corporate-run pages to allow comments.

It's like setting up a Twitter account and shutting it down because people are sending in comments.

Industry needs to differentiate as to when a company becomes responsible for certain activities, Is providing a platform enough to convert something into advertising?  

So it looks like things are changing, and the big companies soon won't be able to push stuff to us by means of an online support group. Here at Psoriasis Club our members can say what they think of the treatments they are using without fear of upsetting the sponsors. We don't have any, we are self funded and what people say is their own personal opinion.

Oh I almost felt like an Old Hippy then. Power To The People The Times They Are A Changing.

[Caroline]

Yes, the times are changing.
But beware! Specifically the media industries ánd some governments (VS, VN, France, Dutch, and of course all dictatorial states) are searching for ways to control the Internet.
See for instance the SOPA, PIPA and threatening ACTA treaties and laws. For now social media have halted these laws, but the powerful keep on pushing, trying to get justice on their side.
Trying to use arguments of intellectual property going above fundamental civil rights, using terrorism, using childporn, all to install controlling tools on the web.
And that finally with the intention to get a grip on what is said on the Internet. On what we say about our pharma.

I think we should take care a lot.
Give attention to what is happening in the great wide, but limited viewed, world of politics.
And be there and react !!!

My 10cts

[Fred]

I think we should take care a lot.
Give attention to what is happening in the great wide, but limited viewed, world of politics.

So what's the options? we keep our mouths shut in the hope that SOPA & PIPA will just blow over! or we keep giving our voice as individuals and let people see we are not frightened of the big companies. I have not put anything on this forum that is against any EU law and would remove any post that contravenes EU laws. but it's a small non profit forum with members from around the world, and I can't be here all the time so where do I stand. as owner of a forum and living in France I am governed by French law, yet my host is in the USA. So which law should I apply to Psoriasis Club and how can I possibly monitor what is posted 24/7?

What I know of SOPA & PIPA it's a USA thing and it is up to the USA citizens to decide what happens. I'm a EU citizen and follow the rules of the country I live in, and if that means I have to pay a bit more for hosting in France, so be it. I will not be silenced by fear of a big company wanting to stop me reporting information from reliable sources or giving my opinion of what I as a psoriasis patient think of a particular drug.

[Caroline]

Read about ACTA.
Much worse than SOPA and PIPA
Also heading for medicine, seeds, innovation, it is not only Us that count, it is about trade in the whole world that should be honest to all people and should not only make the richer richer and leave the less without medication they need.

It is good if we the citizens are able to say what we want on our medication to firms that produce them.
We should keep it that way, and therefore we have to be alert and look to the future. What almost happened in the US may happen in the EU with ACTA.
Even by the stupidest reasons, you know what Karel de Gucht said today?
He said: "ACTA must be ratified in Europe otherwise we lose our face towards the world."
Now that is some politician. . Disgusting..

[Fred]

Most of the people against ACTA seem to be the ones that want free music or counterfeit goods. Surely if a drug company has spent millions to develop a drug they have the right to protect it!

In my day we campaigned to Ban The Bomb. Did it work? to an extent yes, but man will always find other ways of killing each other. and we move on to the next thing to protest about. I think we should ban SPINNING

[Caroline]

I pay for my music.
And what you say is suggestive, right what the media industries want you to believe. Think out of the box..


BTW Artists have already proven that they earn more money with giving away and doing concerts. The sad thing, for the industries, is that they are not in between anymore.

Personally I care most for the destruction of innovation by patents on the most stupidious things.
Did you know that facebook is already claiming the rights on the term "book"?
Well, that are the things that should be avoided.
If you invent something, really invent, and not just claim a word or a gesture or a button, e.g. the CD, or e.g the cure to psoriasis, or a very good innovation to a motorcycle, sure than you may claim intellectual property right.
But lots of inventions lean on earlier known common things. If we as the world want to have a future than we have to be able to build on history, without letting money we need for innovation flow to Patent Trolls that produce nothing.
Rule 1 for me is: IP ok, but only if you produce something with that IP.

[Troll]

Now now boys and girls aren't we going a bit Off Topic here?

Trolls that produce nothing.

Do they mean ME!

[Caroline]

Haha, sorry for the confusion. No I don't mean you of course, I mean patent trolls. Organisations that buy patents and anyone who uses that patent must pay them. In fact they do not produce anything, they only make production more expensive.

A patent system is useful to protect investments in sincere inventions, the current patent system is way off road. They try to patent everything.

We're not off topic. Treaties like ACTA hit also on medicine. Possibly and hopefully not our medicines, but it surely might.

[Fred]

Trolls that produce nothing.  

Do they mean ME!

Caroline does not me, I wouldn't dare.

@Caroline you will be pleased to see this thread then? Fujifilm to make Humira copy

Edit: -1 to non biased information: Leo Pharma UAE psoriasis support programme