posted
The Lyme movement, including this forum and specifically named LLMDs and the Igenex lab, is being attacked and denigrated on a public Facebook page called Invest in ME.
IinME is a UK charity which is one of the best hopes for ME/CFS patients in that they have never bought into the idea that ME/CFS is a ``psycho social `` illness, and they are dedicated to calling for proper biomedical research. It's an important page there on Facebook, with over 1,700 ``likes''.
It's very good that they are allowing the debate to proceed, maybe because the original post is all about a very well-respected CFS/ME advocate having begun to post on his own blog about Scott Forsgren's web site with its recent info re Dr S:
The person quoted below is clouding all of the issues and trying to make ME/CFS patients give up on the idea that some of them, or indeed many of them, could well be infected with Bb
What makes me most concerned is that although the chap seems to have a great deal of scientific knowledge yet he also has a certain nastiness in the way he writes. And a secrecy about himself too, as he has declined to answer questions as to what scientific or medical training he has.
This type of thing is new to the UK.
I've never seen such a determined effort from someone who supposedly gave up on the fact that he had Lyme over 10 years ago, but has nevertheless kept himself up-to date on the very latest Lyme happenings and research.
Please read the thread, which is the only one there on the Facebook page with hundreds of comments.
Some of you with knowledge of the science may wish to ask to join the page and help to add to the voices speaking the truth. It would be much apperciated - thanks
This is one of the nasty comments below, but there are many others that sail close to the wind re libelling LLMDs and Igenex and 2 UK doctors.
<<Mike Green: PS look up the article "Chronic Relapsing Neroborreliosis" where treatment response was charted weekly in response to antibiotics. Response was almost immediate. This article is by a pro-lyme disease doctor.
Please, everyone, look up the hard data and follow the evidence. If it works or helps you, that is great. But this whole lyme thing is an utter can or worms with so much misinformation, most of it from a fringe group of American doctors. Bill Harvey once claimed the entire world was infected with lyme disease through congenital transmission. We need some perspective. I fell for the lyme thing myself, and I have friends that chased the idea they had lyme to the extent of almost killing themselves with heavy duty drugs, they have never been the same. 11 March at 16:34 �>>
There is a lot more like this, quite often with sweeping statements that are not backed up by references, yet references are given for other things.
Best wishes from Andromeda
[ 03-20-2012, 10:18 AM: Message edited by: Lymetoo ]
Posts: 180 | From UK | Registered: Nov 2005
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posted
His Facebook image (with no details of his hometown or any personal data) is just a picture of a reclining frog, and he used to be known as Kermit FrogSquire.
He doesn't sound ill, to have kept up the pace of his posts.
He says something about the microscope he just happened to have, was a "standard research microscope" - not many people have such things - yet he will not admit to any qualifications.
It would not be held against anyone to not have any degrees and so on, I'm sure of that in our forums, as many patients have actually taught themselves a lot since they began the fight for their health. So why does he not say either way?
Andromeda
Posts: 180 | From UK | Registered: Nov 2005
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
These people have appeared on other forums. Not ever sure how many there are, one posing as several, or what. Some have bought into a named illness and don't want any defections from that group. Others may have tried lyme treatment and didn't ever understand that it can be incurable. Still others are sociopaths preying on sick people. And if there are moderators of a forum, they may be researchers or patients who also don't want any defections from a group. To discouage people from finding the real cause of their illness is disgusting.
Take your pick. I don't think it is possible to change any of the above types. If you want to try to help others with more accurate information to counter this crap, you can. I don't do this anymore. Too tiring. Some of the readers of this stuff do see thru it, some are too innocent to do their own thinking.
Seems to me that defamation is still a legal crime, whether it is done on the internet or in person.
Posts: 2888 | From USA | Registered: Mar 2004
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I went and read Scott Forsgren's write-up of Dr S in VA - it's a good write-up - I recommend it!
Posts: 13116 | From San Francisco | Registered: May 2006
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