a volunteer to do a story.

[Meshal]

In one of my reddit posts, a journalist from a press agency in the UK was interested about my condition, and asked me If I can do a story about how I knew about POIS and the suffering. I agreed but then he asked me If It's ok to put my photo as well with the story .

 As he said: "For us to be able to send the story out to media organisations they will need a name and images so that it doesn't look like a made up person and so people are able to relate to the story.", I kinda agree with him, but at the same time It's difficult for me personally to just put my face as the guy who has this disease, I barley told my parents and I'll look like a pathetic If everybody I know knew about this. I told him that I'll post this in the forum since we all got almost the same thing. maybe one of you guys is ok to do it.

Although he mentioned: "If you were able to send us some images of yourself we can offer you a 50/50 split on what we make on the pictures - I'm not sure if that changes your mind?" I really couldn't tell what he actually mean but still not enough.

the journalist: harrietwhitehead@mercurypress.co.uk
their website: mercurypress.co.uk

[Quantum]

Hi Meshal,

In October 2016, a web journalist came here to POIScenter and wrote an article about POIS from questions he asked to some of us, through e-mail.  He made contact through e-mail only, and never asked for our real names, and neither for a photographs.  You can see his article at https://melmagazine.com/these-guys-will-do-anything-to-avoid-coming-279fc4eb1a8b .  You can also see how he proceeded, by registering and creating this thread:  http://poiscenter.com/forums/index.php?topic=2364.msg19749#msg19749 .

I am the one called Jeremy in the article, which is not my real name.  Mr Blum never asked for my real name, and never saw my photograph.  He send me questions by e-mail, and I answered him by e-mail, that's all.  And, if you read carefully the article, he does mention that I replied to him by e-mail, so he has been very professionnal and clear about his sources.  And, I used an e-mail address that does not have my real name in the address, so that this journalist had no way to learn about my real identity.

So, see for yourself how you feel, but know that if you do give your photo, all you family, neighbors and friends will know about your POIS, and even strangers may recognize you... personally, I would never do that !  POIS is already a burden, no need to add to it.  This journalist that is contacting you does not seems to understand the consequences of what he is asking for.   

Well, just my opinion.  But be sure to protect yourself, Meshal.  Some journalists may be very greedy, and may not care about the consequences in your personal life once their article is out.  I do not say this journalist is, I don't know him, but  what I do know is that informing people about POIS does not have to be done in a way that would cause problem to any POIS sufferer by exposing his privacy to the world - we have the right to stay anonymous.

You can show him the link about the 2016 article, and argue that a good article is possible to make, even without any photograph or real name.

[Observer]

Wise words, Quantum.

As someone who has decided to appear twice in the media, I think you should not accept the proposal. Well, if I were you I would do exactly the same.

I only decided to reveal myself because I was feeling very confident about it and moreover, I was not feeling POIS effects anymore after discovering niacin so it was more like a "Ok, I have this condition which I can now completely manage but I have been suffering a lot because of it and I would like to help other people with it and  fund a complete research"; something that I would never have done in my worst POIS years   (Well, I never talked about it to anyone since I was afraid they would think I was crazy or that it was all on my mind,so you can figure it). I guess this was the second reason which helped me to "come out of the closet": In POIS it is almost impossible for everyone who has it to have an stable and calm mind to talk about this issue.

However, after these two appearances I refused to take part in more interviews -even half-anonymous because people could relate my experiences- since I didn't want to be the "POIS guy". People need to know that there are normal people suffering from it, and this can be done in multiple ways, without resorting to reveal your identity.

[Meshal]

Hi Meshal,

In October 2016, a web journalist came here to POIScenter and wrote an article about POIS from questions he asked to some of us, through e-mail.  He made contact through e-mail only, and never asked for our real names, and neither for a photographs.  You can see his article at https://melmagazine.com/these-guys-will-do-anything-to-avoid-coming-279fc4eb1a8b .  You can also see how he proceeded, by registering and creating this thread:  http://poiscenter.com/forums/index.php?topic=2364.msg19749#msg19749 .

I am the one called Jeremy in the article, which is not my real name.  Mr Blum never asked for my real name, and never saw my photograph.  He send me questions by e-mail, and I answered him by e-mail, that's all.  And, if you read carefully the article, he does mention that I replied to him by e-mail, so he has been very professionnal and clear about his sources.  And, I used an e-mail address that does not have my real name in the address, so that this journalist had no way to learn about my real identity.

So, see for yourself how you feel, but know that if you do give your photo, all you family, neighbors and friends will know about your POIS, and even strangers may recognize you... personally, I would never do that !  POIS is already a burden, no need to add to it.  This journalist that is contacting you does not seems to understand the consequences of what he is asking for.   

Well, just my opinion.  But be sure to protect yourself, Meshal.  Some journalists may be very greedy, and may not care about the consequences in your personal life once their article is out.  I do not say this journalist is, I don't know him, but  what I do know is that informing people about POIS does not have to be done in a way that would cause problem to any POIS sufferer by exposing his privacy to the world - we have the right to stay anonymous.

You can show him the link about the 2016 article, and argue that a good article is possible to make, even without any photograph or real name.

exactly, this is what I thought when he tried to persuade me to send a photo and how is it going to benefit the article. but I think his organization is not that popular, and in order for your organization to be very fast you have to "not care" about others. I only posted this to see If someone actually willing to, which I don't think so. as you said POIS itself is a burden. we rather cure it first then I will make a movie about myself If you want to .

I'll try to convince him about it. after all I have to spread the knowledge.