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ISDA Lyme Disease Guideline Project Plan

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Posted 3/10/2015 1:47 PM (GMT 0)
Ok, can't post the link. But it's open for public comments through April 9th on the ISDA website
Posted 3/10/2015 4:32 PM (GMT 0)
Did you mean IDSA? Infectious Disease Society of America?
www.idsociety.org/templates/content.aspx?id=32212267305

And was that what you were hoping to post?
Posted 3/11/2015 9:23 PM (GMT 0)
Changing the guidelines will do nothing. Without a test that can determine the cause of the disease or a cure the guidelines are useless.
Posted 3/11/2015 9:42 PM (GMT 0)
Really? How can you call treatments that heal people useless?
Posted 3/11/2015 10:39 PM (GMT 0)
I think applewine was calling the "guidelines" useless, not the treatments.
Posted 3/11/2015 11:29 PM (GMT 0)
Whew! Thank you for clearing that up, sknight!
Posted 3/12/2015 12:17 AM (GMT 0)
scool
Posted 3/12/2015 2:09 PM (GMT 0)
Thanks for posting the link Traveler. The guidelines may be useless but if there is a public comment period, shouldn't we be making comments? Just a thought.
Posted 3/12/2015 4:09 PM (GMT 0)
I started to, but I think having chronic Lyme and promoting ILADS over IDSA may be something they consider as 'having a conflict of interest'?

However, anyone having interest in answering anyway, please do! devil
Posted 3/12/2015 5:06 PM (GMT 0)
This was posted on the LymeParents group:


From The May Day Project:

Last night, The May Day Project hosted a webinar, the purpose of which was to discussing the IDSA's current public comment period, and to suggest methods for addressing the IDSA with scientific facts. The May Day Project has asked their patient advocate supporters to withold making comments to the IDSA until after they have seen the webinar and to support their comments with science. The webinar was recorded and will be available later.

WEBINAR- Facilitating Progress With The IDSA: Suggested Practices For Their Public Comment Period

https://www.facebook.com/events/368336056687368/ https://www.facebook.com/events/368336056687368/
Posted 3/12/2015 5:12 PM (GMT 0)
I don't suppose anyone has any highlights or notes from that webinar?? That video is over an hour long - sorry. I've got too many things going on in my house right now to be able to sit still and keep my concentration on just one thing for that long!! LOL!
Posted 3/12/2015 5:55 PM (GMT 0)
I didn't watch it, either. I do like their point about making sure to make science-based comments. It's far to easy for us as patients to make emotional- and anecdote-based arguments, which, while certainly valid, won't win over any skeptics in the medical community.
Posted 3/12/2015 8:31 PM (GMT 0)
I completely agree with you Nosila! I'm battling that in trying to get things changed in my own state.
Posted 3/13/2015 1:31 AM (GMT 0)
Quote Traveler: I started to, but I think having chronic Lyme and promoting ILADS over IDSA may be something they consider as 'having a conflict of interest'?

However, anyone having interest in answering anyway, please do!

----------

And being an IDSA board member while having financial ties to pharmaceutical companies isn't a conflict of interests....???

lol rolleyes
Posted 3/13/2015 8:49 PM (GMT 0)
I agree, sknight!! LOL!!!
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