A timely reminder....
- Thread starter trfogey
- Start date
-
- Tags
- als book information work
- Status
trfogey
Very helpful member
- Joined
- Jan 31, 2008
- Messages
- 2,043
- Reason
- PALS
- Diagnosis
- 07/2007
- Country
- US
- State
- NC
- City
- Raleigh
limegreenphysicist
Distinguished member
- Joined
- Feb 19, 2010
- Messages
- 228
- Country
- US
- State
- Alabama
- City
- Auburn
I feel so violated...this psuedo-scientific propaganda is ridiculous but as I say in my research with nothing you can prove anything. Im just upset because I thought we were all safe here to talk about our situations and I feel like ripping this authors head off and punting it through an upright.
Just to be clear to any newbies that may read this and have or have had lyme disease..there is no scientific link between Lyme's disease and ALS all of it is speculative. And my situation nor those stories shared from other lyme patients should be used as any evidence to support this persons propaganda.
Thank you to those folks who let me know that I was featured in this sad attempt at scientific publication.
Just to be clear to any newbies that may read this and have or have had lyme disease..there is no scientific link between Lyme's disease and ALS all of it is speculative. And my situation nor those stories shared from other lyme patients should be used as any evidence to support this persons propaganda.
Thank you to those folks who let me know that I was featured in this sad attempt at scientific publication.
Alyoop
Very helpful member
- Joined
- Jul 5, 2010
- Messages
- 1,796
- Reason
- DX UMND/PLS
- Country
- NZ
- State
- NZ
- City
- NZ
We have ALS and no Lyme in this country, how do these people fit countries like mine into their theories. I have asked this question before, but never had an answer, funny that.
America is not the centre of the universe, other countries exist, really they do.
America is not the centre of the universe, other countries exist, really they do.
TedH5
Very helpful member
- Joined
- May 17, 2010
- Messages
- 1,142
- Reason
- PALS
- Diagnosis
- 08/2010
- Country
- US
- State
- GA
- City
- McDonough
This is just an interesting tid bit I learned the other day. I hope that this is not considered promoting another site because tht is not my intention. Patients like me was brought up. I recently learned that the same person who started up ALS-TDI also started up patients like me. I am not promoting or making any editorial comments positive or negative just found it interesting and thought I would share.
trfogey
Very helpful member
- Joined
- Jan 31, 2008
- Messages
- 2,043
- Reason
- PALS
- Diagnosis
- 07/2007
- Country
- US
- State
- NC
- City
- Raleigh
We have ALS and no Lyme in this country, how do these people fit countries like mine into their theories. I have asked this question before, but never had an answer, funny that.
America is not the centre of the universe, other countries exist, really they do.
The authors of this "book" are Swiss.
And they cited many "references" to the incidence of Borrelia infections in places like Europe and N. Africa.
And some of us Americans know that Switzerland is not in America, although I do like Swiss Miss instant hot chocolate mix.
TedH5
Very helpful member
- Joined
- May 17, 2010
- Messages
- 1,142
- Reason
- PALS
- Diagnosis
- 08/2010
- Country
- US
- State
- GA
- City
- McDonough
I downloaded the book...they are making some quantum leaps and portraying them as facts. I guess you can say they are taking circumstatial evidence and portraying it to fit their thesis. Even using people's posts which often are anecdotal at best and using them to support their theory. How they expect any to take them seriously as researchers is beyond me. The most factual part of what I have read so far is when in the beginning they put out the disclaimer they they are not medical Dr's and none of what they are writing should be taken as medical advice and of course they are not responsible if anyone does take it as medical advice.
Alyoop
Very helpful member
- Joined
- Jul 5, 2010
- Messages
- 1,796
- Reason
- DX UMND/PLS
- Country
- NZ
- State
- NZ
- City
- NZ
Well I jumped rather high to presume it was American based..... fell face down in the mud. At least the mud covers my blushing. Ha ha.
I should not judge all Americans based on Americas next top model!
I should not judge all Americans based on Americas next top model!
Katie C
Very helpful member
- Joined
- Aug 1, 2009
- Messages
- 1,563
- Reason
- Lost a loved one
- Diagnosis
- 07/2009
- Country
- US
- State
- CA
- City
- San Jose
She now has an entire page dedicated to her unfair treatment, and paraphrasing quotes from the forum.. then linking back to here. I dunno. Maybe she'd feel better if she got those fillings removed.
trfogey
Very helpful member
- Joined
- Jan 31, 2008
- Messages
- 2,043
- Reason
- PALS
- Diagnosis
- 07/2007
- Country
- US
- State
- NC
- City
- Raleigh
Blushing accepted, Aly.
Ted, this ALS-Lyme stuff has been around for years. In fact, the very first ALSuntangled publication had a debunking of the then-current claims of the Lymers. I attached a copy of the ALSuntangled article to some responses I've made when the Lyme evangelists showed up here in the past, so you might be able to dig that out of the archives here. If you don't find it, send me a PM and I'll send you a copy.
As to the PLM/ALS TDI connection, it was much more open and well-known when I was diagnosed four and a half years ago, but, with the big flow of Augie's Quest and MDA money into ALS TDI, that connection has been glossed over.
I've been a member of both of those forums as long as I've been a member here, so I recognized the screen caps from here and the ones from the ALS TDI forum instantly. In fact, one of the ALS TDI users whose post got screencapped was here on this board last year at this time, convinced that he had ALS caused by a tick bite. After he got tired of arguing with us here, he moved on to those two forums. They don't know he's never been diagnosed with ALS and I don't participate either place much any more, so I haven't outed him. Mainly because he is a likable guy and there are very sharp people at both places to call him out when his mind heads for orbit.
Ted, this ALS-Lyme stuff has been around for years. In fact, the very first ALSuntangled publication had a debunking of the then-current claims of the Lymers. I attached a copy of the ALSuntangled article to some responses I've made when the Lyme evangelists showed up here in the past, so you might be able to dig that out of the archives here. If you don't find it, send me a PM and I'll send you a copy.
As to the PLM/ALS TDI connection, it was much more open and well-known when I was diagnosed four and a half years ago, but, with the big flow of Augie's Quest and MDA money into ALS TDI, that connection has been glossed over.
I've been a member of both of those forums as long as I've been a member here, so I recognized the screen caps from here and the ones from the ALS TDI forum instantly. In fact, one of the ALS TDI users whose post got screencapped was here on this board last year at this time, convinced that he had ALS caused by a tick bite. After he got tired of arguing with us here, he moved on to those two forums. They don't know he's never been diagnosed with ALS and I don't participate either place much any more, so I haven't outed him. Mainly because he is a likable guy and there are very sharp people at both places to call him out when his mind heads for orbit.
Alyoop
Very helpful member
- Joined
- Jul 5, 2010
- Messages
- 1,796
- Reason
- DX UMND/PLS
- Country
- NZ
- State
- NZ
- City
- NZ
Ok, I have g. Gg led her name and feel I'll at the thought that some of you have your faces in her book. It's got to be illegal to do this without permission. It's certainly a whole lot of crock from a person who does not know what research is. I see she has been in tears. I would be in tears if she had published my photo. I wonder if she gave a thought to them. Kelly you must be beyond seething. I really feel for you.
Trfogey, your post just popped up. Thanks for accepting my red face, must be sun burn!
Trfogey, your post just popped up. Thanks for accepting my red face, must be sun burn!
trfogey
Very helpful member
- Joined
- Jan 31, 2008
- Messages
- 2,043
- Reason
- PALS
- Diagnosis
- 07/2007
- Country
- US
- State
- NC
- City
- Raleigh
Let's see...
"great big fuzzy testicles" remark quoted-- check.
"quacktard" remark quoted -- check.
Yep, I'm FM6.
And she has no idea who ALSuntangled is, because she thinks they have a forum that I've asked that she be pre-banned from.
And she definitely doesn't understand how G--gle Ads work.
What an exercise in paranoia and conspiracy theory.
I expect an increase in Lyminators here in the next few weeks, after this little episode.
Gonna be fun.
Is there a daily bag limit on Lyminators, Al? Or should we just tag them for you and David and Richard? Apparently, they are in season now.
TedH5
Very helpful member
- Joined
- May 17, 2010
- Messages
- 1,142
- Reason
- PALS
- Diagnosis
- 08/2010
- Country
- US
- State
- GA
- City
- McDonough
I went ahead and emailed my Neuro, Dr. Glass the links to the site and the book because I know he has done some research for ALSuntangled and asked if he could forward the info to his associates at ALSuntangled.
olly
Extremely helpful member
- Joined
- Jan 10, 2008
- Messages
- 2,743
- Reason
- PALS
- Diagnosis
- 11/2007
- Country
- uk
- State
- uk
- City
- uk
oh boy,this is just so not playing cricket.............anything of mine in that book and i will take legal action and so should everyone else,its unlawful without your permission.
- Status
Similar threads
