Being a Guinea Pig

[JohnB]

Last week I received a letter through the post inviting me to help rid the world of Psoriasis. Now as far as I am concerned this lot are a bunch of charlatans and no way would I end up in their clutches. How they got my details and the fact that I have psoriasis isn't something I want to discuss on an open forum.

But it got me thinking what would it take for you to join a trial.

For me nothing less than a recommendation by my Dermy Consultant and their assurances to the efficacy of the trial would suffice.

[jiml]

Nothing would make me offer up my body for a trial, unless I was really ill with psoriasis and nothing else had worked then I would be the same as you john and would need to be referred by my dermatologist

[Fred]

#1 I would only consider a trial put to me by my dermatologist.

#2 I would not consider it unless it was from a drug maker.

#3 I would want to be given as much information as possible to do my own research.

#4 I am more than happy to give a biopsy or let trainees play with me, but a trial is not something I would be too keen on. I was offered one once but I needed more psoriasis and not to have been on a bio.

I am in favour of trials by drug companies as without them we may not have what we have today, and I am grateful to those that took part but they must be official and regulated.

I'm a bit concerned how your details were passed on but respect your view on not wanting to discuss it. Unfortunately today things have changed for the good and the bad.

The good is that treatments are getting better and psoriasis is becoming more acceptable.

The bad is that the scammers and money makers know that most people with psoriasis are an easy target. They know people will fall for their tricks of so called trails and endorsements.

In closing: Trials of any type should be discussed between dermatologist and patient, the patient has the final say and no way should a patients information be passed on to anyone without consent.

Edit: I forgot to add that Psoriasis Club will never accept recruitment of it's members.

[Bill]

"Help rid the world of psoriasis" sounds much better than "Risk your life so we can profit from a commercial product".

[Kat]

I'm not much on the idea of being a guinea pig.

When the warnings on drugs that are on the market say things like "may cause death" and that's after they've gone past the trial stage.... I'll pass on being the reason for such warnings if I can help it.

Although my favorite warning is "do not take if you are allergic" it's like well DUH!

But no, I don't see me ever taking part in a trial. I'd have to be at death's door to willingly participate most likely.

[jiml]

I'm not much on the idea of being a guinea pig.  

When the warnings on drugs that are on the market say things like "may cause death" and that's after they've gone past the trial stage.... I'll pass on being the reason for such warnings if I can help it.  

Although my favorite warning is "do not take if you are allergic"  it's like well DUH!

But no, I don't see me ever taking part in a trial.  I'd have to be at death's door to willingly participate most likely.

Well said kat I couldn't agree more

[D Foster]

If you can find me a trial for gin tasting then I will be a guinea pig but other than that why would you after all what are you getting out of it except possible problems .

[JohnB]

I'm not much on the idea of being a guinea pig.  

When the warnings on drugs that are on the market say things like "may cause death" and that's after they've gone past the trial stage.... I'll pass on being the reason for such warnings if I can help it.  

Although my favorite warning is "do not take if you are allergic"  it's like well DUH!

But no, I don't see me ever taking part in a trial.  I'd have to be at death's door to willingly participate most likely.

Well said kat   I couldn't agree more

Fair points Kat. Sadly these comments have to go on medication no matter how remote the possibility would be in said action, it's today's litigious environment and the ineptitude of today's society. I mean why would you down a bag of salted peanuts if you were allergic to nuts? Hence the may contain nuts warning.

I still think my decision would depend on the circumstances and information available. I wouldn't rule it out completely.

[Caroline]

It would need very sensible and knowledged people to fight the cause of Psoriasis.
As far as we can see this on the forum and the poll What about genes? , there seem to be two components involved, a genetic component and a ??? component as about half of the members in the poll show a “no relation” component. So there may be something else going on.

It even might be so, that this “something else”, is the cause for some of us and the trigger for the ones with genetic dependencies.

This would imply that the scientists that want to beat Psoriasis must have a very good idea on what they want to do and must have a determined idea on what the cause is of Psoriasis. Recently in the NL news was dr. Thio who said that about 60 genes might be involved in Psoriasis in the next sentence he said that everyone can get Psoriasis. A contradiction?

[Kat]

Fair points Kat. Sadly these comments have to go on medication no matter how remote the possibility would be in said action, it's today's litigious environment and the ineptitude of today's society. I mean why would you down a bag of salted peanuts if you were allergic to nuts? Hence the may contain nuts warning.

I still think my decision would depend on the circumstances and information available. I wouldn't rule it out completely.
[/quote]

Yes, I understand the warnings it's all about the company protecting themselves. But as for people who would knowingly take something they knew they were allergic to.... well I guess I should probably not say what I think about them.


I do appreciate anyone willing to be part of a trial for drug companies for whatever reason they may have. It certainly helps! But I'd have to be pretty desperate before I'd be willing to participate.