A timely reminder....

[limegreenphysicist]

That is what my family and I are wondering...can I take legal action because she put my face and my husbands face in her book without permission and could publicize my health information that I have done quite well to keep private outside of the ALS Community. What are my rights? I was so upset last night bc I don't want an influx of Lyme-goobers using me as an example of this fantasy she has conjured up in this book. And the way she displayed my post was out of context and rude in her commentary.

 

[Alyoop]

Try and contact her. Maybe you could ask for it to be removed. Funny how she can say what she likes, but it's difficult for the people involved to stick up for themselves.

 

[limegreenphysicist]

Hey Aly,

I just did that...very tactfully told her that my feelings were hurt and I felt dehumanized having my face and my diagnosis exposed to whoever and whenever. I adviced her that she needed to remove it and any other posts from this forum. I look forward to her response. I did not attack her or her papers validity..I just said as one human to another I'd appreciate the gesture of not using any posts.

 

[olly]

i do know that health records are private property.
over here in the uk we dont have access to our health records unless we apply to view them and then we have to pay a fee, there is a debate at the moment about putting uk health records on the internet so patients can review them but there is concern that this could be misused by others.
someone can not use your picture in a book or film ect without consent,that is the law.
we should campaign against book and the publishers...........as if we have nothing better to do or less worries.

 

[limegreenphysicist]

She just replied and said she is removing access to the book and will take my picture out of the book. She just needs to abandon the whole thing bc its ridiculous but hey everyones a scientist online.

 

[Alyoop]

That's good news Kelly. What a relief. No more photo avatars. I am going to change mine as soon as I get to my computer. We have all learnt a valuable lesson.

 

[TedH5]

I received a response earlier today from Dr. Glass and he also forwarded it to Richard Bedlack, whom Dr. Glass stated to me is the driver behind ALSuntangled. Just a few minutes ago I received a response from Dr. Bedlack, which I am pasting below:

"Dear Jon and Ted, thanks for bringing this to my attention. ALSUntangled will definitely be taking this on in 2012. Stay tuned!"

 

[brooksea]

I can still access the download and all she did was blur your pic a bit, Kelly!

I finally had to quit reading the nonsense! She posts patients' comments as evidence/research!

 

[HelenL]

Yeah, it is definitely poorly written even when she was actually doing the writing, but most of it seems to be cut and paste to try to make whatever point she wants. And this is from someone who spent months trying to get diagnosed with Lyme 'cause I had to have that instead of ALS, right? Not... I went on an antibiotic for more than a month to see if it would help, and the only difference I found was... nothing I can remember.

I have the book that she doesn't reference (as far as I can tell), written by a medical writer who had Lyme in her family, called "Cure Unknown: Inside the Lyme Epidemic" which touches upon the ALS connection and the doctor she mentions and quotes at liberty. I do think there is some connection with SOME patients, but is not the "cause" of ALS by any means!

 

[olly]

who is this person? where can you see this book on line?
i did see a thread some days or so ago about a book but did not take much notice..........can't find it now.

 

[HelenL]

Olly, I tried to send you a pm (as I don't want to post her name here), but can't due to your settings... I think her posts were removed to stop her from quoting our site more and more? Not sure, but if you want, pm me and I'll send you her pdf. BTW, her website is ridiculous in itself!

 

[olly]

will do that helen,thankyou.
just curious,is she a publisher or doctor? or is it more personal to prove a connection?
i dont write anything here that my doctors,family ect dont know about.........nothing to hide,my life is like an open book but still to use what any of us a wrote here without asking is wrong.

 

[patricia1]

I googled my name and found quotes I made on the forum .I wondered how that happens
Pat

 

[trfogey]

will do that helen,thankyou.
just curious,is she a publisher or doctor? or is it more personal to prove a connection?

According to her other website, she is a nutritionist and her husband has a PhD. in chemistry. From something that she wrote on the ALS site, she may also have been infected with whatever the European version of Lyme disease is (tick-borne illness of some kind).

I g--gled my name and found quotes I made on the forum .I wondered how that happens
Pat

David has done a lot of work on this site to make it very attractive for the G--gle search robots. The fastest time that I've ever seen for a post here to be picked up and made available on G--gle is 9 minutes, which I'm sure pleases David quite a lot.

The thread here has been taken down, which is somewhat unfortunate because observing the difference between her reconstruction of the thread and what was actually said to her in the thread is quite enlightening about her thought processes and her motive.

 

[HelenL]

Yeah Alan, I read that page on her website too, too bad she feels that only she gets to make comments, and wants the last word. I did download the pdf, and though I actually agree with the premise that some ALS can be confused with Lyme (you know that from my other posts), she didn't do any of the research that can actually prove her claims... it's poorly written, and using someone else's work/images without permission is still stealing, whether or not you put in a link to the original site. You have to get something called "permission" to use copyrighted material!

I did download the "book" and leaf through it, and wasn't impressed with the data or its presentation.

Happy New Year!