TOUCHED BY LYME: Serving up IDSA Facebook comments to Congress
“The Devastation of Lives and Lies: Those with Lyme disease and related chronic infections respond to the Infectious Diseases Society of America’s (IDSA’s) request for comments,” is a 274-page document prepared by patients and sent to Congressional Members, Congressional Committees, CDC, State Legislators, the President, and the media.
On January 4, 2012, the Infectious Diseases Society of America posted the following question on its Facebook page. “What would you like to see from your society in the coming year?” The organization’s PR people intended the question for their professional membership. Instead, Lyme patients throughout the US and around the world took notice and leapt at the opportunity to speak out against the IDSA’s Lyme treatment guidelines.
Now, a group of patients has compiled 2350 of the postings into a document they’ve entitled “The Devastation of Lives and Lies: Those with Lyme disease and related chronic infections respond to the Infectious Diseases Society of America’s request for comments,” which they are distributing to Congress and other officials.
In its introductory statement, their report says:
Within days we had posted over 1,000 comments, though many of us had our posts taken down by the IDSA and are now blocked from posting on its wall. Word of this unique opportunity traveled swiftly, and went viral within the Lyme disease community globally, within the first week of posting.
How? Since we saw many of our posts being removed, we set up a parallel Facebook wall to copy everyone’s posts onto, and we monitored the IDSA’s wall daily for several weeks, 24/7, in shifts. We then gathered up as many comments as we could to form this document (which contains very minimal editing), took up a collection for printing, and we are now bringing it directly to you.
Why? Because we need answers, we need the truth, and we need to have our lives and dignity restored. Too many lives have been devastated. Too many have needlessly died. The despair in this document is palpable. Please help us.
Click here to read the document in its entirety.
This project resulted from the combined efforts of Bambi Albert, Alan Burdge, Joy Burdge, Timothy Grey, Tammy Hildebrand, Lisa Hilton, JWJ, Todd Meese, Nina Moore, Lucretia Perilli, Kathryn Richards, Beth Erin Warnick, and Jessica Wheeler. I salute them for a job well done.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at firstname.lastname@example.org.
- February 29, 2012 at 9:27 am
Kudos and many thanks to this dedicated group… your efforts are appreciated!
- February 29, 2012 at 2:50 pm
I know atleast 6 women who have been affected by this awful disease some so badly they have lost movement in body parts. They need surgery or are on strong medicine. They never knew they had a tick on them, no signs of one, no bullseye!Some were told there was nothing wrong with them until they persisted!! All these women are young and usually active but this has slowed them down. A woman at 37 should not be in diapers because the only medicine they have left to try to treat her causes her to lose all control of her bladder,she can not tend to her 2 young children!
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- February 29, 2012 at 7:10 pm
I salute them as well!! Thank you so much.
- February 29, 2012 at 8:43 pm
At your service!!
- March 1, 2012 at 3:38 am
I am not sure what this will achieve… Instead of moving to the middle ground both sides are digging in.
- March 2, 2012 at 6:08 am
For someone to say both sides are ‘digging in’, is quite absurd and totally out of touch with what has been going on with the IDSA. The REALITY is that one side has people DYING, not to mention many thousands suffering needlessly, while the other side is pocketing money from insurance companies by a decades-long campaign of denying patients proper treatment. This has been proven, in court in 2008 by the CT State Attorney General’s office. The lyme community is not ‘digging in’ – the only way they have been digging in is in the form of a coffin six feet under. They have been suffering, dying and going homeless for decades now and it’s high time that the truth be exposed to our government leaders to stop these crimes. Over 2,350 comments is not ‘digging in’, it’s a cry for help from very real sufferers for our leaders to put the handful of IDSA criminals behind bars where they properly belong forever. They are personally responsible for the deaths of hundreds, if not thousands – and I knew five of them personally. This shouldn’t be happening in America. Countless thousands more Americans will suffer needlessly until there is proper JUSTICE. So, please do not insult these long-suffering people with an uninformed quip that they are ‘digging in’. Remember, you could be bit by a tick tomorrow and you would learn, in time, that you would be right there with us 100%. The lyme community INSISTS on unconditional surrender by the IDSA’s governing body. Our lives – LITERALLY – depend on it. Maybe you should read up on what’s been going on for many, many years before judging us.
- March 1, 2012 at 7:37 am
Thank you so much TO EVERYONE fighting for us. THANK YOU!!!
- March 1, 2012 at 7:51 am
Just want to say a “big thank you” to all of you who contributed to this project!!!
Hoping this will open some eyes, ears, and HEARTS to bring about change in the diagnosing and treatment of lyme disease and other chronic illnesses. You guys and gals, ROCK !!!! Thanks again!
- March 1, 2012 at 4:11 pm
Thank you… a huge heart felt thank you. I am a year into IV meds and still getting my ass kicked. You guys are true heroes in making sure all of our cries for help were heard and not deleted or ignored. Thank you <3 <3 <3
- May 20, 2012 at 6:56 pm
It has been how many years since lyme disease was discoverd? If these people have done nothing thus far they are not ever going to.I want to know what it is they are hiding? I feel it should be up to the patients how we should be treated, and like many other diseases people are treated evryday with all kinds of medicine is that not harmful and have effects in its self,I honestly dont understand what their deal is,and i think its pitiful that people have to drive 100s of miles away to be treated, everyone should be allowed to be treated in every state. this is all about that big green dollar bill, god forbid if them or one of thier family members gets lyme disease… ripping people off is what their doing and they know it, the only disease i have ever heard of that you cant and are not allowed to be treated for.
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