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IDSA picks Lymeless token patient for new guidelines

Posted: Mon 16 Mar 2015 13:52
by ChronicLyme19
This should make your blood boil:
In 2011, the Institute of Medicine announced sweeping reforms, which included a call for patients to be at the guidelines table. Thus, the IDSA’s decision to include a patient is not surprising. After all, the IOM specifically pointed to the IDSA Lyme guideline development process as an example of what not to do. So which patient representative did the IDSA choose for its Lyme guidelines panel? Someone the Lyme community has never heard of. This was immediately clear. But when we contacted her last week, she also advised us that she knows nothing about Lyme, has never had Lyme, and has no knowledge of it or the interests and concerns of those who have the disease.
LYMEPOLICYWONK: The IDSA chooses a token patient for its new guidelines revision process
Lorraine Johnson, JD, MBA
http://lymedisease.org/news/lymepolicyw ... ocess.html

Re: IDSA picks Lymeless token patient for new guidelines

Posted: Mon 16 Mar 2015 14:59
by duncan
It appears to me, if this is accurate, that the IDSA doesn't think too much about the IOM's recommendations. Or ILADS. Or the opinion of the greater Lyme patient community.

Or maybe even public opinion in general, since any non-Lyme individual that reads about this likely will be disturbed by the implications.

Re: IDSA picks Lymeless token patient for new guidelines

Posted: Mon 16 Mar 2015 15:59
by ChronicLyme19
This is a big middle finger from the IDSA to the Lyme Community. :evil:

Re: IDSA picks Lymeless token patient for new guidelines

Posted: Mon 16 Mar 2015 16:14
by duncan
Yep, it is over the top, isn't it?

That's why I kinda like it. This should be paraded for all the press to see: This apparent contempt for the professional recommendations of a sister agency, and what feels to me, personally, as malice toward patients its members are meant to serve.

The cavalier and demeaning interpretation of placing a "patient" on the panel - and to seem to comply - but in actuality just equivocate, and put a non-representative person never sick with Lyme...As if it were little more than word play, with nothing more at stake than a move of a piece in a child's board game, instead of the fractured lives of sufferers and their families hanging in the balance.

Someone should draft a press release and blast it to major press outlets.

Re: IDSA picks Lymeless token patient for new guidelines

Posted: Tue 17 Mar 2015 9:24
by hansemand
I believe no word is strog enough to characterize this latest expression of cynicism and inhumanity by IDSA. What can be done? Very Little . But if you havent signed the Tuttle petition, please do. (everybody can sign)
https://www.change.org/p/the-us-senate- ... a-and-aldf

Re: IDSA picks Lymeless token patient for new guidelines

Posted: Tue 17 Mar 2015 13:32
by ChronicLyme19
I have, but that's not a bad idea to share these together. Thanks for the reminder!

Re: IDSA picks Lymeless token patient for new guidelines

Posted: Sun 22 Mar 2015 15:49
by hansemand
Would be great to have parioners forwarding the Tuttle update to friends etc, so that the 26.800 would be joined bymany many more.