Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
RETALIATION!
As predicted, it appears they didn't like the new chronic Lyme disease definition.
And they really don't like the internet groups, like this one, and patient advocates, parents of sick children, Lyme treating doctors and other doctors, labs we use and our volunteer organizations.
May I present the IDSA's latest pile of trash. They can't help but keep attacking and attacking the patients they are suppose to be HELPING! Brain damage?
Keep in mind these are CHILDREN'S Infectious Disease doctors doing this. What horrible representatives of what is suppose to be a "professional organization".
However, in this article it appears they are getting rather mellow in their old age (and horribly monotonous), and/or they can smell all the lawsuits headed their way and they've toned it down a bit.
posted
I looked at the article. It says according to IDSA guidelines. My understanding is that only ILADS guidelines are listed with the National Guidelines Clearinghouse? If so, do you have anything more to say about how everyone can use that fact to our advantage?
I can see it coming - Confronting the Misnomer of the Misnomer of Chronic Lyme Disease - points one through gazillion...
An idea for here - make a Hall of Shame list of the main obstructive doctors, A-Z, with a few bullet points listing their conflicts of interest, that anyone can look at here to learn what's going on and be able to talk about it.
[ 06-15-2017, 03:35 PM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Great idea Robin, I'd be happy to contribute/shame the four illiterate and insulting ID doctors I saw here in Montreal.
Edit: Yes I'm still mad about what they did to me and the suffering they caused.
Posts: 289 | From Montreal, Canada | Registered: Mar 2017
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Robin402850,
I saw your post late last night and was hoping to come back today and explain the NGCH info for you.
I am just burned out right now and don't have another ounce of what is needed to try.
Maybe tomorrow?
And the Hall of Shame- good idea... check this partial list out.
To be on there they MUST have said something publicly that is stupid or beyond stupid. It can't just be he/she dumb doc here or there did this and that.
Reason is I can't verify it and I can get sued for not supporting the negative comments.
Plus, if I allowed personal comments on there, my own list would fill up 50 pages!
posted
What I'm thinking about is having simple talking points about the main vocal perpetrators, like the writers of the IDSA guidelines, against Lyme patients that people can read and use to educate the public about what's really going on.
Like, this doctor's conflicts of interest are: (defense for insurance companies, patent holder, etc)
Don't think we need to list all the doctors since we know they're all being instructed to stand down.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Ok, I started two sites years ago for that same purpose, and to preserve the info that would suddenly "disappear" when needed.
It took a lot of time researching and documenting to compile the info. LOTS of time. Exhausting amounts of work actually.
Both are in big time need of updating. I don't have time, but if anyone wants to do the research, I'll gladly post it on the sites for everyone's use.
We also have charts with patent info, conflicts of interest for each idiot, etc., but that is the older info too that was used for the AG's investigation. It would also require a lot of work to update it.
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