Concerns about the Prostatitis Foundation (PF)

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Concerns about the Prostatitis Foundation (PF)

Post by webslave »

2021: Update: The horrible Prostatitis Foundation is now defunct. This is now an historical interest thread

2015: Update to my concerns about the Prostatitis Foundation are now summarized at the end of this thread :mrgreen:

Every day men arrive at this forum totally confused after reading all sorts of nonsense and misinformation about prostatitis/CPPS at a long list of behind-the-times websites all over the Internet.

One major reason for this is that the Prostatitis Foundation (PF) website (prostatitis--dot--org) refuses, for reasons unclear, to link to this discussion forum, even though we have an essentially non-commercial forum run by sufferers themselves! But the PF do have links to prostate cancer sites!

It is time to lobby the Prostatitis Foundation to take more notice of us, and include links to this website. Mention your displeasure, as a patient, at being ignored by the only organisation supposedly representing prostatitis patients in the USA.

Here is the full list of people controlling and supporting their website. Simply copy and paste the full list into your email's "To:" field (no need to send many different emails) -->

[email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected]

You can also call Mike Hennenfent, head of the PF, to ask him personally why the Prostatitis Foundation is not working diligently to network with all websites discussing this issue. His number is (309) 325-7154 or (309) 325-7184.

Thanks for helping to fight the good fight! :simsim:
Last edited by webslave on Mon Nov 06, 2006 7:13 pm, edited 6 times in total.
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Post by MastCells »

I have sent a complaint to the Prostatitis Foundation (PF) regarding their refusal to link to our website. :yelling: I think everybody else who has been helped by these message boards has the duty to do the same. If enough people complain, maybe the PF will give in. Let's find out if they really do care what we think. After all, they're supposed to represent us.
Last edited by MastCells on Sun Feb 22, 2004 8:33 am, edited 1 time in total.
This is not medical advice. Please consult your physician.
MS

Post by MS »

Good point Mark. Prostatitis.org is a good site for patients who have bacterial prostatitis, but the site seems to de-emphasize nonbacterial prostatitis. I do not understand why they don't link to the discussion forum either. I will send an email also to see why.

MS
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Post by MastCells »

This is outrageous! Read the response I received from the supporters of the PF! :mad:
From: "Hickman, Clark J." <[email protected]>
To: <[email protected]>; <[email protected]>;
<[email protected]>; <[email protected]>;
<[email protected]>; <[email protected]>;
<[email protected]>; <[email protected]>
Sent: Friday, July 25, 2003 6:26 AM
Subject: RE: The Independent CP/CPPS/IC Discussion Forum


Please ignore these messages that you've received yesterday and today.
Someone apparently has a beef with Mike Hennenfent or something and that
doesn't concern us or the work we do supporting those who call us. Sorry for
this intrusion, but the modern world is full of gripes and politics. I hope
it doesn't become a nuisance. Just ignore these and delete them. Mike will
deal with them.

Clark J. Hickman, Ed.D.

-----Original Message-----
From: [email protected] [mailto:[email protected]]
Sent: Friday, July 25, 2003 12:07 AM
To: [email protected]; [email protected]; Hickman, Clark J.;
[email protected]; [email protected];
[email protected]; [email protected]; [email protected]
Subject: The Independent CP/CPPS/IC Discussion Forum



Dear Sirs,

As a moderator at https://www.ucpps.men/forum and an American prostatitis sufferer, I must admit that I find it *very* insulting that prostatitis--dot--org will not link to our independent forum. Our website is one of the busiest ones dealing with CP/CPPS on the internet, and I and other volunteers dedicate a great deal of our time to offering support to those that need it.

Please, contact Mike Hennenfent of the Prostatitis Foundation, and ask him
why he will not provide a link to our site. Our aim is to help prostatitis
sufferers. We can get to more people and help them if we are linked to
prostatitis--dot--org.

Thank you.
This is not medical advice. Please consult your physician.
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Post by webslave »

They seem so determined to ignore us that I have to wonder if it's a money issue. Usually money is behind this sort of determination and passion.
Last edited by webslave on Fri Aug 01, 2003 7:31 pm, edited 1 time in total.
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tractor316

Post by tractor316 »

I too sent them off an e-mail I will wait for my reply .....
inpain

Post by inpain »

I sent mine in as well
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Post by Paso »

I sent them a letter. I can only agree Mast Cell

/Paso
Age:34 | Onset Age:29 | Symptoms: Suprapubic burning on and off, frequency on and off, Dribbling, | Helped By: PT for sure has helped me, stretching, Baking Soda, drinking lots of water, Omega 3 | Worsened By: Concentrated urine, Coffee, Stress...
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Post by MastCells »

I just sent Mike Hennenfent of the PF an "instant message," since we are both AOL users. I was very polite, and just asked if I could speak briefly with him. He ignored me and just signed off from the internet. How sad. :( Obviously, I feel very passionately about this issue. I think this forum is terrific; it is great because of all of YOU who contribute to it! :-D

If anyone hasn't sent a request to the PF asking them to link to our forum, please do. Activism, guys! It's important! Let me thank all of you who wrote them! I really appreciate it!
This is not medical advice. Please consult your physician.
TK

Post by TK »

In the past, the PF Foundation Website has always seemed to place disproportionate emphasis on the the Infection Theory and Prostate Massage, etc.

But they are not overtly hostile to other approaches, and they do have some good information related to neuromuscular therapy.

My own take on this is that it's sheerly a matter of economics and/or ego. The fact is that, right now, this site has more to offer and a link -- which would certainly serve the best interests of patients -- might slow the counters on the PF site or threaten someone's notion of their own leadership stature.

What a shame! At a time when real answers are emerging and cooperation is required to spread the word, these guys choose to protect their own narrow interests.

I'm afraid it's just another sad, chronic case of Human Nature, Type 3B.
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Post by webslave »

I agree very closely with you on this, TK. I've thought a lot about it, and I really think that for them, it is all about them, and not about the sufferers. If they had the interests of the MEN WHO HAVE THIS DISEASE at heart, this would not be an issue.

:rant:
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Post by webslave »

In the meantime the son of the Foundation's President, who is also one of the Directors of the Prostatitis Foundation, Bradley Hennenfent, has opened his own prostatitis forum where he promotes his Vanity Press (self-published) book with messages like this:

Image

He owns the website where this message was found. I find it pretty shocking, actually. People asking questions at that website are repeatedly advised to buy his book. You are also told not to take things like Quercetin, which has scientific studies proving that it helps men with chronic prostatitis.

So here we have someone who runs the Prostatitis Foundation and has the ear of the NIH running a website containing numerous messages slamming proven phytotherapy, and instead promotes a self-authored book that emphasizes antibiotics + massage (the "Manila Protocol"), which has little or no scientific basis in light of recent studies, such as Dr JC Nickel's study into Levofloxacin versus Placebo in men with Chronic Prostatitis / Chronic Pelvic Pain (found no difference in eventual outcomes) and Dr Lee and Prof. Berger's study (found that one third of both normal men and patients had equal counts of similar bacteria colonizing their prostates).

Does this state of affairs not cause you concern? It does me.

This same Director is known to run another "non-profit" called the Human Cloning Foundation, where appeals are made for funding.

Guidestar.org shows that he has attempted to conceal his participation in this other Foundation. At least it seems that way. I believe there is a Nick Hennenfent involved too.

Image

I don't know how many more "foundations" he runs, but I know he runs a string of websites covering a wide variety of medical topics, as well as sites with titillating sexual content. :money:
Last edited by webslave on Wed Dec 15, 2004 12:25 am, edited 3 times in total.
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Post by MastCells »

webslave wrote:Does this state of affairs not cause you concern?
I find it very alarming! Good detective work, BTW.
This is not medical advice. Please consult your physician.
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Post by webslave »

webslave wrote:... sites with titillating sexual content. :money:
Here's an example (edit: In 2007 this site no longer exists):

Image
Last edited by webslave on Fri May 04, 2007 6:19 am, edited 1 time in total.
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Post by Michael in Boston »

Very sad- people making their identities -personal, professional and in the community based on a disease. And the identity is not necessarily based on helping others (helping others appears in these cases to be a basis for achieving other career goals).

Contrast this with Dr. Wise, who will spend time with ANY sufferer on the phone and in person, is willing to listen to other opinons, is fair in claiming that his methodology is a slow cure without at this time substantial peer-reviewed backing, and only charges a small amount for his time and products as a psychologist (which he earned not on the basis of the disease)

He is not someone with a title that was created on the backs of others suffering. Somoene like Dr. Wise would be happy to be put out of business-the others mentioned here-wouuld lose their identities if we suddenly were cured.

And doesn't Mr H of the foundation know that excessive masturbation creates overexcitement of the nerves leading to flares-shouldn't he be running sites selling relaxation materials rather than sex sites.....
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