Doctor Campaign: Subscribe to PFS Foundation List...

General Discussion Media & Awareness
#1

While the results of clinical research will be a critical step in generating awareness of PFS within the medical community—and spurring additional research that eventually leads to effective treatments for the condition—it’s equally important for our doctors to be aware of the work the PSF Foundation is doing on a month-to-month basis.

As such, please do everything in your power to get your doctor(s) to subscribe to the foundation’s mailing list. They can do so on the homepage of the PFSF site:

pfsfoundation.org/

To share an anecdote about how effective this can be, I recently sent one of my doctors the link to the Brigham and Women’s Hospital study…

pfsfoundation.org/news/clini … affiliate/

This doctor is a department head at one of the most prestigious hospitals in America. She never treated me for PFS symptoms, but I informed her of the condition a few years back and she has long been sympathetic. And as soon as she saw that BWH was undertaking a major clinical study, she emailed me to say that (a) not only would she never again prescribe finasteride for hair loss, but (b) would advise her colleagues to do the same.

Even if your own doctors are not as humane as my doctor, few of them will want to be left holding the bag when research proves a causative link between finasteride and PFS—if only to avoid malpractice suits and patient ill will.

So, please, don’t be shy, get your doctors to opt into the PFS Foundation newsletter asap.

Thanks.

#2

Good idea we should also sign up media organisations to the mailing list.

#3

Certainly. If anyone knows any members of the media, encourage them as well to sign up for the PFSF newsletter.

The more that our three constituencies – PFS patients, the medical community and the media – know, the better off we all are.

Because the key player in this growing epidemic – i.e., the company that manufactures the drug – is not doing its job of helping clean up the mess.

So we must take the issue out of the courtroom and into the streets.

#4

PR - this is a great idea!

#5

Guys,
I think this is the appropriate thread for saying this. I just wanted to say how important this community is for our cause. We are literally making history, believe me. If it weren’t for this group nothing would have happened - and with this I mean 90% of the guys here wouldn’t even know they have PFS. We’re facing a HUGE company and 2/3 of the medical community. We’re funding a foundation to research our condition to finally spit it all in their faces.

This is no comfort for anybody here, I know, but I think we should remember this fact once in a while to stand tall with our faces up.

#6

Here, here, Gmmoura!

Let us learn from the likes of Mahatma Gandhi and Martin Luther King, Jr. to stand peaceful yet unified, proud, educated and unrelenting in this fight against a heinous injustice.

Merck knows it is wrong. The FDA knows it is wrong – and that Merck is wrong. And thousands of PFS patients and their friends and loved ones the world over know that both parties are wrong.

Now, little by little, the general public, the media and the medical community are coming to the same realization.

At some point in the next few years, Propecia will be as infamous as Thalidomide…

en.wikipedia.org/wiki/Thalidomide

…and Merck will have to spend another decade trying to sweep the remnants of the epidemic it precipitated under the rug, just as it does today with Vioxx.

Meanwhile, please do continue to educate your doctors by getting them to sign up for the PFS Foundation newsletter:

pfsfoundation.org/

1 Like
#7

I’ve sent the research link to my prescribing doctor already. I can’t wait to hear his response - up to this point he hasn’t believed in PFS. Medical minds are slowly changing…

#8

Thank you, jorbie.

As for other forum members, please do the same:

First, call you doctor’s office and ask for his/her email. Then email the link to the PFS Foundation home page along with a note asking him/her to sign up for the newsletter.

If they refuse to give you the email address, get his/her mailing address and send a printout of the PFS Foundation home page and news announcement of the Brigham and Women’s Hospital research study, along with a polite note saying something to the effect of, “Dear Dr… I thought you should know that Harvard’s teaching hospital is undertaking a major clinical study of PFS, a condition that, as you know, I suffer from. Please sign up for the PFS Foundation’s newsletter.”

Better yet, make an appointment with your doctor and hand him/her the materials in person.

The only reason on earth that your doctor may not yet have this important information is that you have not taken the initiative to get it to him/her. Forget about the FDA, forget about attorneys, forget about pharmaceutical companies. Each of us has the power to go directly to the prescribing source and educate him/her.

And as I have said, your doctor may be condescending to you in terms of his/her perceptions of PFS, but trust me, he/she probably isn’t arrogant enough to say:

“Ahhhh, Harvard. What the hell do they know about medical science?”

#9

I tried many times to get my doctor to read what other doctors like Dr. John Crisler had to say about PFS but he wouldnt listen to anything I said and kept insisting that I see a physiatrist.

Most doctors seem to think that if an illness is not in their medical text books then it does not exist.

I think we would be better trying to get our message out to the media as most of the medical community dont want to listen.

#10

I understand, Mark. And the word IS getting out via the press on a fairly steady basis:

pfsfoundation.org/media/

So if your doctor has not seen any of that, print out a pile and include the announcement of the Brigham and Women’s Hospital clinical study and bind it all together and hand it too him.

If he still says you’re crazy, tell him you will be (a) changing doctors immediately and (b) but will be back in his office the results of the BWH study next year.

Also ask him if he thinks Harvard’s teaching hospital is run by a bunch of quacks. And…

…ask him if he will put his opinions about PFS in writing on his letterhead – saying that the condition does not exist.

That will give him pause, because in the back of his mind he’ll wonder if he could be liable for malpractice at some point. So I bet he will NOT write you such a letter. But he will get the point.

Remember: there is 100% certainty that PFS is real and devastating. Now we just need a little time to bear that out.

#11

My reply to people who are skeptical that we are really sick - go get a prescription for Propecia and take it for a year(how long I took it) if you believe Merck instead of me.

#12

Agreed – I have long thought the same thing.

If Propecia is “safe for its intended use,” I would love to see any doubting doctor, any defense attorney and certainly any Merck employee take the drug for even one month.

That would be a convincing show of confidence.

But it will never happen.

#13

Don’t those Bosley assholes have a public e-mail? We should all add them subscribe to the PFS Newsletter.

#14

Yeah…they should be held accountable as well. Just need someone to find a cure.

#15

Good to see more and more members reading this post.

I have said it before and will say it again, it’s only a matter of time until the scientific truth about finasteride comes to light.

So when you talk to your doctor, do not ASK him what he thinks. TELL him the facts – that clinical studies at major institutions are under way and that if he is true to his medical degree, he needs to sign up for the PFS Foundation newsletter asap to keep apprised of this issue.

If he refuses, tell him you are changing doctors immediately and also filing a complaint against him with the AMA. He will be on record for ignoring key developments in medical science.

I am 100% serious here. Why should you pay a doctor who, in 2013, is essentially saying the Earth is flat?