Please Contact your State and Federal Representatives!

General Discussion Media & Awareness
#1

We have people trying to contact the media through various avenues, but I havent heard anyone trying the political route yet. At least worth it is worth some effort.

Link to the House of Representatives page… upper right hand corner you can put your zip code to find your Rep.

house.gov/representatives/

Link to the US Senate’s contact page.

senate.gov/general/contact_information/senators_cfm.cfm

This page has links to contact Federal, and State elected officials including the President and State Governors.

usa.gov/Contact/Elected.shtml

Right out of college I worked 2 years for a elected official as a committee clerk. I will try to put together a template letter (and post it in this thread) you can send to your elected officials just fill in the blanks with your corresponding information.

Lets get going!

#2

Perhaps you could also link us to the site that tracks campaign donations so people can check who funds their representative’s campaigns?

#3

opensecrets.org/

I think this site should do the trick but I haven’t looked into too deeply.

propublica.org/

This site is run by a non-profit that tracks payments made from pharma to individual doctors. I don’t know how reliable it is though, because I have searched several doctors that were very likely candidates for receiving money from Merck and nothing has showed up.

#4

I wrote to mine. Will write to my senator too.

Anyone else on board? Candida conversations are becoming a little stale.

#5

If anything, the candida is just a another effect not a cause of the condition.

#6

When I mention candida, I’m expressing shock and outrage that people would rather argue that PFS is a bad case of fungus (really, WTF??) than actually reach out to the media and scientists for help.

#7

Yes, we’ve discussed this. Its pretty ridiculous.

#8

Its a very good idea Broken_Pecker.

Any conclusion to this post.

Is there anyone trying to contact? If Yes, my suggestion is to contact all 50 state representatives in a pretty much at the sametime (say in a single week) and also including a copy to the media.

This brings in some kind of discussion among the reps at least offline. Im sure, if there is media element, there will be some discussion.

Lets all please take it a bit serious and try to have it done by the end of 1st week of March.

Unless we act, noone reacts. We should put in every effort that brings aid to PFS foundation.

#9

The problem is that most guys here would rather sit behind their computer screens and self medicate than work on getting attention to the problem. Which is really the only way we are ever going to get official medical recognition and hopefully help.

#10

Very well put. I’m sorry you have to be here, but it’s good to have someone with brains and desire to take action.

And there are 435 State Representatives.

#11

I couldn’t agree more. I want to raise more media interest in the UK but have yet to receive any support from this forum in my quest to do so.

I know the foundation is doing its part and that things are at least moving forward (albeit very slowly) but if I came across the PFS Foundation website online I would be struck by the lack of activity (especially if i approached the site as an outsider sceptical of PFS).

I fully understand that we have no financial backing and that it is only through the hard work of people willing to spend their free time and resources on the Foundation that it is even up and running. Make no mistake that i am grateful for this but I’m still worried that we’re not working together enough to get the real exposure that our condition requires and deserves.

Most of us have been waiting for the roundtable in Italy to occur but now it’s come and gone and I feel the event has not had the impact I was hoping. What’s next? Where are we going from here? I know things are probably going on behind the scenes but I don’t feel that we’re making significant progress.

How can it take so long to get the powers that be to listen and take action? Why has Merck not been sued or held accountable? What has to be done to make this happen?

As for the Foundation we really need an indication of how much money is required for each research initiative and how much has been donated thus far. At least this will make the Foundation website show some signs of activity and give us something to monitor progress with. I also think this will encourage members to donate.

I don’t want this post to just be a rant. I want us as a collective to pool together and continue to push forward. So someone in the know please
tell me what the next step is. When is the next research initiative expected to take place? What are we waiting for in regards to being in a position to prove that Merck should be taking responsibility?

The majority of forum members seem to be American and so while I can’t contact my State and Federal Representatives (as I’m from the UK) this is something I feel all US members should do. I implore everyone effected by this condition to be more proactive and to do everything they can to highlight our plight. This is the only chance we have of solving this terrible situation. Please don’t wait for others to do the work for you. This condition is detrimental to us all and we don’t have enough members to sit idly by and wait for someone else to do all the work for us. We must work as one.

#12

very well said Coming to terms.

I understand everyone wants to get the things fixed from his own end and tying different treatments for himself. But, again, as everyone knows we dont have a concrete treatment option for all the symptoms.

However, at the same, if we can just spend few extra minutes to send out some communication to state reps, It surely would make an impact.

Lets cry out all our problems to them…lets present the suicides that happened.

If media team can bring in national newspapers such as Nytimes, more people would read our problems and brings in more awareness and If one those requests for the funds, it surely helps us.

If there is a way, we can reach all the members of this forum, I request admin to send the communication to all the members to send out an email to state reps.

We dont deserve to be in this situation for more time guys. Lets please help ourselves.

Thanks.

#13

Merck is being sued… in the US and Canada at least. Our main problem seems to be that our condition or at least the more extreme cases of it are relatively rare. And since its rare, and relatively “invisible” combine that with that many guys are hopelessly embarassed about it, and totally unwilling to come forward about it… well you have this.

Some of us have been trying to urge others to get media attention but its difficult when even some of your own fellow sufferers are adverse to any media actions you take…