A timely reminder....

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trfogey

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Putting this in the General Discussion forum so that more folks will see it.

Everyone -- please be aware that every post that you make here is available to anyone on the I n t e r n e t. Be careful to guard any information that you wouldn't want spread across and misused on that network by passing it along by Private Message here or personal email.

Today, the author of a "book" about ALS made her work available for download to readers of this forum in order to get some users here to review it. I took advantage of the offer and downloaded the file. Within the first 40 pages of that document, I discovered several illustrations that were screen captures of posts that were made on this board. No identifying information was obscured in the illustrations, and usernames were given in the text to expand on and clarify how the post fit into the case the author was making. One of the users whose post was captured is still active here, as of last week.

Upon discovering these screen captures, I reported the author of the book and her link to our board administrators and David has removed several posts from that thread.

The author's use of those posts was a direct violation of the copyright provisions of ALSForums' Terms of Service.However, a patient 'Netsurfer could have gathered all of these posts using a simple G--gle search. This person got caught because they were obsessive and fanatical enough to want to promote their cause here and didn't think anyone would notice what they had appropriated from here without the required permissions.

So be careful how much personal information can be gathered up here and correlated with your user name. And remember -- what you say here might just turn out to be grist for someone else's mill.
 
trfogey, thanks for taking the time to check that out and for watching out for all the forum folks. Your efforts are appreciated.
 
Thanks TR I only had time to get to page 10.

AL.
 
Thanks TR. We all appreciate your detective work.
 
Thanks TR for the heads up and watching out for us. We get comfortable talking to friends and forget the dangers that lurk.
Linda
 
And also be aware that sites like Patients Like Me can collect info and sell it to the insurance companies... at least that's what I've heard, so correct me if I'm wrong here.
 
Thank you TR for reminding us of the ease of public information gathering. We do get complacent about what we put out among the world. Good job.
 
We don't deal with or promote Patients Like Me.

AL.
 
I apologize if this isn't the place for this, but this thread made me take a second look at my very first post. I realize now that I put personal information in that post regarding my ongoing road to diagnosis that I don't want others outside this forum to see. What action, if any, can I take to remove the thread or perhaps revise it in such a way that doesn't provide so much information?

Thanks.
 
Trfogey thanks for looking out for everyone here on the forum. Much appreciated!
 
Patients like me was discussed at a recent epilepsy conference in Rome. My husband was astonished to find out how much the information on the site is used by the medics. Not altogether bad, if they were getting good and reliable statistics, but all the information is just hearsay and peoples opinions about their conditions etc.
 
I found her website (not hard to do just search) and even there she has a link to ALS and lyme connection which takes you to a page of nothing but forum posts from this forum and another ALS forum and as Trfogey said she just copies and paste's the posts and some even include the profile picture. She calls that research?
 
I am not on twitter but if anyone is they should send a tweet to ALSuntangled about her website because whay she puts out as research and the way she portrays it as factual is scary.
 
I found her website (not hard to do just search) and even there she has a link to ALS and lyme connection which takes you to a page of nothing but forum posts from this forum and another ALS forum and as Trfogey said she just copies and paste's the posts and some even include the profile picture. She calls that research?

Yep, I found all that too, TedH5. I sent a note and a copy of the "book" to to the administrators of that other ALS forum (which we also don't promote here), with a suggestion that they follow up by evaluating whether or not EU online or health information privacy protection regulations were violated in that at least one of the screen caps was a post from an EU country citizen.

And, from the bit of research that I did into their domain registration, there is a possibility that their site is being hosted in the US, which brings US copyright law into play since the unlicensed reproductions are being served from a US location.

So, we have potential liability for copyright violations in three different legal jurisdictions. No wonder the author cried yesterday. Best of all, she can't plead ignorance of copyright issues, because she reproduces an article from a medical journal (by scanning it into an image file and pasting the image file into the "book") and claiming that the image file was a "fair use" of that journal article. So, not only is she (and her co-author husband) an intellectual property thief -- she's a lazy thief.

Oh, what a tangled web we weave....
 
Im glad you've got our backs, Allen.
 
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