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General Discussion Media & Awareness
#1

Hi Guys,

I’ve been in contact with a journalist who is going to run a piece on PFS (UK) he would like a selection of sufferers/view points stories! He also wants a mixed bag in terms of exposure, symptoms and damage. Not necessarily just severe. If included you can remain anonymous if you so wish.

Please PM with your name and telephone contact and I will in turn pass on your details. (Summary of exposure, main sides and damage would be good, though not necessary as the journalist can ask for these when he makes contact).

The important thing is we step up.

Let’s get behind this please.

Any opportunity to be heard should not be wasted.

I don’t imagine being outside of the UK will be a problem.

Regards

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#2

Aup mate, I may be interested to share my experiences if its anonymous. Who does the journalist work for?

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#3

A national so a good readership / coverage @Gord

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#4

This is absolutely a fantastic move ! I think this will be great for the cause and in a paper that’s read by a lot of people .

I would consider being involved however My biggest concern is having this disease assigned to my identity in some way , which I wouldn’t want .
I know that sounds weird but I’m sure you get what I mean .
I wouldn’t want to be associated as the “PFS “ guy or ‘the guy with a dysfunctional cock’ etc etc by the public !

#5

@Forwardsnotbackwards you can remain anonymous he asked about the weight gain side. While I had that for a few years I’ve gone the other way but would be good to have your input with u having that. I expect it will be a few lines from each in reality to support a summary write up of the disease. Though I do respect your decision

#6

what you waiting for? You laying in your bed and waiting for cure? reading forums gonna cure you? sending emails not gonna change anything, if you can’t let the others hear you nothing will be changed. Please push to medias, or protest outside of mercks, things like that gonna help us. Not forums!

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#7

I would like to make use of this oppurtunity, it’s chances like this that will help us.
I PM’ed you :wink:

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#8

I’ve passed on the volunteer details to the journalist, dissapointingly there were only 3!!!. If I was sitting on the outside I’d easily be swayed into the camp of it can’t be that bad if we can only find 3 people who are suffering/willing to talk… We play into the hands of the sceptics??? As stated you can remain anonymous are there anymore that are willing?

#9

I’d be willing to talk to a journalist on the condition that not even they know my identity.

#10

Presumably you can give them whatever information you like. They won’t be asking to see your birth certificate.

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#11

@hopingiwillheal anonymity is ok u can discuss with journalist if he selects/wants to speak to you. He wants a nix

Can you pm me
Your name
Contact number
Country
How long u took it for and when.

I’m only asking for your name for contact purposes.

Regards
And thank you

#12

Hi just to let the few that volunteered know, the journalist has been very busy but will try to put some time aside to get in touch soon.

On the back of the recent publication by Reuters and the Daily Mail this could be great timing a perfect springboard in getting our stories out.

The imminent launch/release of the YouTube stories will hopefully have a great impact/ stir public interest.

If anyone has changed their mind and is willing to participate please PM me.

Regards.

Lazarus

#13

As an update I’ve received contact today from the journalist, he wants to have a call over the coming days with myself and seems very keen. I’m sure he’ll be in touch with those of you who provided details very soon. I’ll provide another update after my conversation. Regards

#14

I’ve spoken to the journalist today he said he will be in contact with those who volunteered this week.

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#15

It looks like the news article will be finalised very soon. Interestingly Merck has sent me a mail today requesting access to my medical records. Very coincidental indeed.

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#16

Are you going to give them access? That is very interesting… keep us updates!

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#17

I’m not Laz but I wouldn’t trust any corporation with that sort of information.

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#18

I’ll think about it !!!

#19

You understand these posts are public right and Merck is reading every word here right?

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#20

As in, I agree with your thoughts but I think you are endangering your position for a potential legal discourse, by stating these things so openly.