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» LymeNet Flash » Questions and Discussion » Medical Questions » IDSA's FB page - UPDATE with IDSA's response

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Author Topic: IDSA's FB page - UPDATE with IDSA's response
17hens
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Can you believe they're asking?

Check it out!!

Then reply!!!

https://www.facebook.com/IDSociety/posts/357764004239867?cmntid=35779159%E2%80%8B4237108

[ 01-09-2012, 05:25 PM: Message edited by: 17hens ]

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"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

Posts: 3043 | From PA | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
everythinghurts
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Thank goodness! I hope everyone that visits this site will let them know to educate the medical community on Lyme.
Posts: 84 | From New Jersey | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
jeffinca11
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UP
Posts: 165 | From lymeland | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
Dekrator48
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The last time I looked there were 833 comments!

(They will remove any that seem derogatory, and they have removed some.)

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The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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Larae30
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I feel dumb because I posted a long thing and then got scared and deleted it because I didn't want them having my name and then my fiance told me that even though I delete it, it doesn't delete from their end...fail haha

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Treating lyme, bart and babs

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BuffyFan
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why wouldn't it delete from their end? if I delete something from a friend's wall, they just get a noticet hat I posted something, not what it said.(??)
Posts: 287 | From somewhere | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
In19944
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I posted and asked all my informed friends/family to as well. I don't see any harm if they have my name. Are they going blacklist me at hospitals?

I understand people want to keep their privacy but since we aren't exactly dropping like flies in a plague like scenario, there's nothing else to do but scream and yell.

Posts: 184 | From taking pills | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
hammer
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They deleted my post. It was not hostile nor had foul language. I simply stated that I didn't believe every member of IDSA was corrupt and I suggested they watch "Under Our Skin", follow the facts given in the movie, do their own research and make their own informed decision.
I also stated that it was time for members to stop "playing nice" by going along with the outdated, corrupt guidelines. I guess I hit a nerve!

Posts: 69 | From Birmingham, AL 35242 | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
Tracy9
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This is all over the Facebook Lyme Community. People are contacting their local news media, copying all the comments before they can get deleted, etc. I believe it is up to 1500 comments now. Naturally the questions was posed to it's members!

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NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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17hens
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IDSA Response to FaceBook postings:

Thanks for reaching out to IDSA for comments on the recent Facebook comment campaign about Lyme disease in response to the question What would you like to see from your society in the coming year?

IDSA is an active, member-driven society and as such, this question was intended for the 9,000 or so IDSA member physicians, researchers and healthcare providers who are concerned about the full range of infectious diseases including drug-resistant infections, influenza, hepatitis, HIV/AIDS, tuberculosis and other life-threatening diseases.

IDSA absolutely remains committed to providing the best treatment possible for all patients, including those diagnosed with Lyme disease.

It is in the best interests of patients that we rely on scientifically valid medical evidence to inform our treatment guidelines.

As recently confirmed by an independent panel of medical experts, our Lyme disease guidelines represent the best advice that medicine currently has to offer.

IDSAs most recent clinical practice guidelines on Lyme disease remain current.

All of our guidelines, including that for Lyme disease, are reviewed on a regular basis to determine the need for updating based on any newly available (and scientifically rigorous) evidence that would warrant a change.

The IDSA website will indicate when the guideline is being revised or updated, along with an estimated timeline for completion.

Despite accusations by some to the contrary, it is simply untrue that the panel members who worked on our Lyme disease guidelines had conflicts of interest.

All were completely transparent and none of them stood to gain from recommendations in the guidelines.

In fact, they would have benefited more from recommending long-term (and expensive) antibiotic treatment.

For more than a decade, IDSA has listened to input from physician and patient advocates from the chronic Lyme community.

The Society has participated in discussion panels in scientific and community settings, welcomed presentations at our scientific meetings, responded to hundreds of calls and letters,

given hundreds of media interviews and successfully resolved a legal challenge to our practice guidelines, which resulted in the decision by a special review panel that the IDSA guidelines are medically and scientifically valid.

The answer, therefore, to whether or not the IDSA will pay attention to the comments on our Facebook page and the feelings of patients in general is clearly yes.

Providing guidance for good patient care has always been and will continue to be a cornerstone of our Societys mission.

Relying on science and medical evidence is the best and safest way to achieve that.

Thank you,

Diana Olson

Vice President, Communications

Infectious Diseases Society of America

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"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

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Pocono Lyme
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IDSA is an active, member-driven society

ILADS is patient driven.

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2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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David95928
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1990 Comments.

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Dave

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lucky8711
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So disappointing....but not surprising.
Posts: 80 | From RI | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
CountryMouse
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At least they admit that Lyme is CHRONIC, that's a step I didn't see before [Wink] . Course the rest is a farce...

"For more than a decade, IDSA has listened to input from physician and patient advocates from the chronic Lyme community."

Is someone posting a response to their comments?

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Country Mouse

6/2011 IgX:
IGG: 31 IND, 41+++, 45+, 58+
IGM: 31+, 39 IND, 41 IND, 83-93 IND
Band 31 confirmed to be Lyme epitope by Igenex 7/2011

8/2011 IgX: POSITIVE
IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+
IGM: 31+, 34 IND, 39 IND, 41++, 83-93+

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seibertneurolyme
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I don't do facebook so did not comment. But thanks to all that did make comments.

Hubby had a phone conference with his LLMD today. The doc wanted to know if we had read any of the comments posted. Just wanted everyone to know how much the docs do appreciate patients who get involved in activism.

Bea Seibert

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jwall
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I definitely posted something. Everyone here should go on their wall (if you do FB) and post a comment. Their response was like a slap in the face (no big surprise), but those affected by Lyme are still going strong with comments and the comments are excellent!
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seekhelp
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All the posts in the world won't change their minds. It's futile. Like they don't know already? I respect all the activism, but why would comment 19,234 sway them more than comment 725 or 24? They are so clear that they believe they are right and THE authority on all Lyme.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
pmerv
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No, they won't change their minds just because we send a few emails, but it's not futile. If I thought that, I give all this up and go back to my garden.

This campaign puts the spotlight on them yet again. Notice they felt constrained to respond. They trot out their same talking points again. They don't have anything else. Where's the beef?

Before the AG civil investigation, the IDSA didn't even bother to respond to us. Now they do. They are afraid of what we might do next.

Every time they speak, it gives us a potential opening to attack them again. I can see numerous points in Olson's letter we can challenge. Some are laughable.

We have to make the most of every opportunity we have. I just know I have to fight injustice any way I can and as long as I can.

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Phyllis Mervine
LymeDisease.org

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hammond
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If you were a member of a private country club (we are all members of our insurance organizations) and if the butler started to deny you access to the facilities, would you continue to petition the butler and the manager? Or would you bypass them and go the presidents office? Or would you go to the Chairman of the Board?

The United States Congress is the ultimate authority on insurance regulation within the U.S.

I have provided extensive proof of chronic Lyme to "famous" individual members of the IDSA in the form of labs and extensive residency proofs and cdc confirmed wb off the charts, cd 57 off the charts with remmission periods documented and blah blah blah....... dating from 1986. One uber famous doctor verbally retroactively negated another suuuuuper famous Dr.'s own charts! Acknowledging IDSA's existence only hinders our cause. I think the best idea is to focus on congress and IGNORE IDSA. Just my opinion.

Posts: 65 | From oregon | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
   

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