Darn! Lost my post tryiing to look up the spelling of a word. Let me use it right now before I forget. Patients Like Me has a guargantuan following. PLM doesn't hide that they use some of your information for marketing purposes; you can read it when you register. PLM is more for social networking, and that has a purpose in the lives of the chronically ill.

harley, I agree that we should not "bash" any site, but we should warn of inform others about sites doing this. For a while PLM was hitting big time news - CNN, Wall Street Journal, etc. with their "story" of bringing patients together and allowing them to compare their treatment regime with others. Sounds harmlelss - until big BAD pharma gets into the picture (remember, I don't think ALL are bad). They will base sales on what folks are using or use it in some other way for marketing. I don't like that.

PLM has been laying low more recently - not sure why - maybe somebody tried to sue them. I dunno.

But I love this forum (I used to love BrainTalk, but it is really dead now. I tried pososting several times and nobody fixed it. (sigh) Her you can disagree with each other - voice your opinion - and come out buddies.

Maybe we have "matured?"

Peg

I type this knowing full well that I will be trashed for doing so...

Okay, I usually keep my mouth shut in here for reasons of my own! I have not contributed in NT for a very long time.

Has anyone of the thread considered that,
1) the membership of the MANY PLM forums (listed here on their home page) are there because they are seeking information, education, have problems with their disease, etc., etc.
2) there is no requirement about completing any information about anything; the Profile. Completing the Profile is NOT required.
3) Not everyone who has PD knows of NeuroTalk, where apparently all the "smart" and "intelligent" people reside.
4) some people come into NT, but feel that this board is "over their heads" intellectually...I have tried many times to get new people into NT, but some find it a bit intimidating, especially when there are off topic arguments, etc.
5) yes, pharma has a part in the PLM for-profit environment. Here is the link to the page about that. I took the time to find it.
6) yes, like many of us who use the internet, members of PLM may ot always read the "fine print" while registering themselves and maybe even if they do, do they understand what they read. How many of you read the "I have read and understand" statements when registering for anything on the internet. Could it be that PWPs who register for PLM are simply seeking a place where they can find people like themselves. HOw many of them actually read the "I have read and understand" statement? I have no idea.
7) this is not a perfect world; motives are not always appealing.

I also don't like that PLM is a for-profit company, but they are. I too don't care for the information that they share about their membership. Nor the fact that Pharma can read the boards.

I looked up the PLM Blog on Google and found that the current blog item is "What Data Do We Sell? A Continued Discussion about 'Data Scraping'”
Posted by bheywood[Co-Founder, President and Director] | October 21, 2010

The Blog does allow for comments to all blog posts and I can see that this particular topic on has 1 comment. Care to make a comment of your own, or simply continue to trash the entire membership of PLM here in NT?

What is most important about any PD board?...we are all patients and caregivers. The members of PLM are also patients and caregivers. They, as we, are ALL seeking something from a forum/board, confirmation that there are others in this big wide world who are just like themselves, and hope to find them in this big Wide internet.

How sad that many of us don't see the big picture...helping others by answering questions, giving advice, correcting misconceptions about PD and all that is involved with having PD. If you have the information being sought by another person, do you share it or keep it to yourself?

So, before you throw stones at someones elses glass house....

Forum/Boards are not all about advocacy (a very important part of the PD community,) not all about science.

I am certainly not advocating that anyone here go to and become a member of PLM. That would not be a good thing for me to do.

Hopefully the administration of this board will get my point and not delete this post.

Digger,
Well said. You state your case honorably and well.

The PWP connected to that site benefit well from it, I am sure, and it may go somewhere great.

What set me off personally was that I had tried for a very long time to get the most basic information from Pharma, such as the "global sinemet shortage", but Merck declared it "proprietary information." And the AMGEN GDNF volunteers had great difficulty getting true information about the decisions that had been made that affected their lives greatly. A large part of the game Pharma is playing is the "information is power" concept - drug companies know a lot and drugs consumers know very little.

And I gave up looking further after having a look at the story of the 200 schoolchildren in Nigeria used to test a Big Pharma drug; 11 or 12 children died; 150 have permanent brain damage and arthritis-like symptoms. Any shred of trust I had in Pharma was gone.
Does Pharma really want to know what PWP think or what we are going through or what we think we need or what should be done? There are many PWP willing to answer all their questions and help them gather whatever information they need. As equals, as partners against this disease, as honest citizens working for a cause. But at the big PD gabfest in Ottawa some years ago, scientists walked out of the room is PWP were allowed to enter.
It's a one-way street.
So when i read that four companies are having a legal struggle over information provided free of charge to them by PWP volunteers, and what they are arguing over is who has ownership of PWP information that they are "scraping" from a free public PD forum; and "scraping" is the word they use - I figure they are the ones who need to get "scraped".
Who ends up owning the information? Big Pharma. If the company that hired two other companies to "scrape" would complete their study and share their analysis with PWP - that would be fair; not a chance that will happen.
The time I spent trying to get information about Merck getting dumped by their supplier of an ingredient in sinemet, apparently part of the Schering-Plough merger deal has certainly changed my thinking. I trust Big Pharma as far as I can throw them.
So when companies are hired to "scrape information" from your website or this one or any other one, the hair rises on the back of my neck for sure. They are gathering huge quantities of personal information, and the history of Pharma in treating PWP pretty much guarantees they will eventually find some way to misuse it. It is not easy, but every new development seems to create new ways for them to damage human lives. Then, alter the evidence, change their story, and stonewall.
Pharma has a trust problem. Did they really have to pay people to register on PWP forums and PWP websites to troll for information? If they want to know about us, how about a discussion sharing information and expertise and opinion and desire. They don't need to send us their scrapers or their trolls or their spies; we are not at the bottom of the barrel to be scraped, and unlike Pharma, we having nothing, nothing, nothing to hide.
Who owns the information? Highest bidder.
How about making all PD information totally public and free at all times? Especially when it was gathered and created free of charge by people suffering from the disease.

Bob,

Big Pharma...just the words can scare a person out of there shoes.

Have you ever seen the film, The Constant Gardener, November 2005? If not, it is about big pharma, the power they have and how it can, and is, abused.

When I read your words, "after having a look at the story of the 200 schoolchildren in Nigeria used to test a Big Pharma drug; 11 or 12 children died; 150 have permanent brain damage and arthritis-like symptoms," I found myself remembering this movie. I just watched it AGAIN last week. It is still on my DVR.

The film does paint a rather dark picture of big pharma.

As to my post above. I know I probably could have said the same in far less words, but when I get going on something that bugs me...I have word overflow.

Is this simply a matter of a generation gap: both chronologically and # of pd years? it would be silly to argue about the forums.....we are probably more advanced and we are ahead in life, in many ways, from where younger pwp are.

It's silly to compare and we need to be where we are most comfortable. Perhaps that's both places. No one should have to be ashamed of who they are or what they want to discuss.

OMG Digger, we should start a separate sub-group of our own: "Early Onset Word Overflow". I suspect it is caused by Mirapex; but whatever the cause, "word overflow" pretty much describes a major part of my relationship with what people refer to as the "real world". (And I reply, "Reality is a crutch".)
Seriously, I have to work hard to shut off the words; the exercises that I am doing with a highly qualified therapist aim at first of all shutting off the chatterbox and finding the non-verbal.
But until we find a cure for word overflow, please continue to word-overflow early and often on this site, and on at least one other site of your own choosing. We may not be able to out-research everybody, but we sure can out-filibuster them.

Well then, you will have to tell me how your therapy turns out.

I don't know about outside of the USA, but here is the USA order the film from Netflix.

It is a good picture of the power one big pharma had over "clinical trials" in Africa. And what the pharma considered Informed Consent and how even that was abused with threats of not being able to obtain medical treatment for any malady.


Oh and I see that I have only 39 posts here in NT, but that is under "digger" Before this I used my first name and had 1,000+ I think. Hence, my comment about not having posted here in a long time for personal reasons.

Agreed! This is the idea behind the National Registry for PD and MS. I just wanted to add that I in no way intended to malign PLM and its members.
Neuro Talk isn't at all "superior" but does have more of an intellectual, impersonal tone, so I can see how some might feel intimidated to post. I agree that we could use more warm, fuzzies around here at times too, but most forums take on a personality or life all their own. I think we are supportive here but in a different vein; by exchanging all our ideas and research, advocacy info, we are empowering one another. It's about taking charge of what you still can do as this disease relentlessly continues to steal from us.

I refer other PWP here for information on supplements or for practical needs and for inspiration. I would be lost if it weren't for reading of Ron, Maxx, and Fiona here actually improving because they are using information shared here to help themselves heal. From what I have read at PLM, they seem to be a good mix of support and information. I guess it all depends on what one is seeking in a support group. For me, information is power.

I also send interested parties here for the advocacy angle. For many, visiting here is an eye opener because many aren't aware that they may even need to advocate for change. Many PWP are not even aware of the Amgen tragedy and should be. You are right that we are all in this leaky boat together. I feel strongly that any newly diagnosed PWP needs to eventually realize that if it weren't for the brave souls who expose themselves to sham surgeries and mistreatment by pharma, we wouldn't have many options at all. They need to be active in patient advocacy to see to it that research becomes translational and global in scope; this is the only way we are going to find a cure. This is one area I feel that Neuro Talk does stand out and shine amongst the forums.

Laura

Digger,
I will try to remain calm enough to watch that movie; it was based on what was done to the children in Nigeria. Truckloads of information are available: Pfizer has stone-walled in court for ten years. But as I began to stare into the dark depths of that story, the Dante's Inferno of 200 children, people close to that story told me that Pharma is stone-walling the trial because it might bring out a whole nightmare: apparently the 200 children are a small example; apparently there are many other cases --- and people have asked me to investigate and write about it.
No. I can't. I started and stopped.
I can't look at that. When I was an angry young man, I used to go after these things. Now I am an angry old man, but only sometimes, and I no longer have the stamina to investigate organized crime in the Boardrooms. It's just too bleak for my morale; it is too depressing. The man they tested 87 drugs on. He had alzheimers and no one would believe him. The examples are endless. I can't live that; I am not strong enough. I can't stare at that for long.
And Digger said this:"Oh and I see that I have only 39 posts here in NT, but that is under "digger" Before this I used my first name and had 1,000+ I think. Hence, my comment about not having posted here in a long time for personal reasons. "
I hope y'all come on back and give us some word overflow. I don't want to be the only blabbermouth in town. And I especially would not want to have said anything here that would have sent you fleeing. You know, because of words.