TOUCHED BY LYME: IDSA learns what it means to “go viral” on Facebook
IDSA gets an earful from Lyme patients on the organization’s Facebook page. But will they pay any attention?
On January 4, a handful of Lyme patients in different parts of the world happened to read the following question posted on the Facebook page of the Infectious Diseases Society of America: What would you like to see from your society in the coming year?
The first to reply was Todd Meese of the United States, who wrote, “How about a cure for Lyme disease?”
Second was Joanne Drayson, a Lyme patient/advocate from the UK, who chimed in with, “An honest review of the Lyme Disease Guidelines looking at the science presented at the IOM workshop and acknowledging that all is not known about this emerging complex disease with its many co infections.”
Jaisibel Sullivan of Kansas said “Some honesty and understanding about Lyme would be at the top of that list.”
Then, it was off to the races. These comments from Lyme patients showed up in the Facebook news feeds of their friends, those friends made their own comments, and well…that’s how Facebook works.
When I went to bed last night, there were almost 300 comments from Lyme patients on the IDSA page. When I woke up this morning there were over 400. More than 500 as I write this now.
Most of the postings refer to the IDSA’s Lyme treatment guidelines, and the negative effect those guidelines have on Lyme patients. The comments I’ve read have generally been respectful in tone. Apparently, some were not and have been removed.
The person running the IDSA Facebook page alluded to that, making the following post: “IDSA wants to encourage open dialog, however, please note that personal attacks against the society or its doctors, foul language, and other abuse will not be tolerated on our Facebook wall. IDSA takes Lyme disease very seriously, for more information visit: http://www.idsociety.org“
I also don’t condone “personal attacks against the IDSA or its doctors, foul language and other abuse.” Yet I understand the deep well of resentment that can give rise to them. The IDSA may claim that it “takes Lyme very seriously,” but the patient experience is very different.
Patients are routinely denied appropriate medical care for their serious illness because their IDSA-influenced doctors and insurance providers follow the IDSA Lyme treatment guidelines. Lives and families are destroyed based on the IDSA guidelines.
The media specialist who’s running the Facebook page may say that the IDSA “wants to encourage open dialog,” but if true, that must be a brand new policy. Up until now, IDSA has done everything possible to exclude patient voices, input from doctors who treat chronic Lyme, and information from legitimate Lyme researchers who have discovered information about Lyme that the IDSA finds inconvenient.
Recent articles from some of the IDSA’s top Lyme guys even call Lyme patient advocates a “threat to public health.” (Gee, IDSA, is that an abusive statement about me?)
Last year, the Institute of Medicine said it was essential for medical guidelines to take patient viewpoints into account. Up until now, the IDSA has never done that.
So, here’s your chance, IDSA. Patients are coming to your Facebook page and sharing views that you invited them to post. Most of them are keeping their language clean. Will you pay any attention at all to what they say? Will you listen for the pain behind their words?
How about a revise of the IDSA guidelines, in an open process that allows all stakeholders a place in the discussion?
I’m willing to hope the New Year will bring some softening to your anti-Lyme patient stance.
But I’m not holding my breath.
Click here to comment on the IDSA’s Facebook page.(Must be a member of Facebook to do that.)
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
I'd like to use the Master's degree I just earned. I'd like to go back to before the seizures put me on life support and prevent the brain damage. I'd like to be a normal twenty-something, for that matter I'd like my childhood back as well. What young person would prefer being sick in bed over going out with friends? This needs to change.
HOW ABOUT A CURE AND A VACCINE AND ADMISSION THERE IS SUCH A THING AS CHRONIC LYME BY THE AMA and PCP who know this to be true and insurance to cover treatment.
Ty Dorothy – for always leading by example. I have been reading over the IDSA 'mission' statement and plan to comment on their link at their invitation once I feel prepared to do so. There have been so many integral, factual, imperative posts. What an outstanding rallying of human beings, each one worthy of the dignity and respect that their voice of suffering now merits. In the meantime, I would like to use your blog as my link to forward on my FB page. Borrowing with gratitude. Blessings always, ~d
I posted 6 posts on Mycoplasmas, re-surfaced latent virus', How macrophages and NKT4 cells are damaged causing cancers and fungal infections and EVERY ONE OF MY POSTS WERE DELETED.
Well over 1,000 Comments from Lyme Victims to the IDSA in 24 hrs!!
Contacting all media possible. Please help!
"A Threat to Public Health" – for (PAIR) (patient advocacy of individual rights) for International Lyme and Assoc. Diseases Awareness, Education, Diagnosis, Surveillance, Treatment and Research –
An infected birthmother, (RN), prosecuted (6) years – "a direct and/or indirect threat to her two minor daughters, herself, and others" – denied rights, privileges and immunities of health services dignity, respect and choice under (ILADS) and (ADA) federal law.
My son has excellent Lyme literate docs.
They are not the problem. My son was diagnosed with Lyme in second grade and he is now 22. Thanks to Mr. Spyrokete, and having to get all of these preauthorizations for oral antibiotics, when we have had the same insurance for years. We need to find a way to get the insurances to pay for rocephtin, which many families cant afford.
He has also been battling Neuro psychiatric Lyme.
Insurance would rather pay enormous hospital bills for inpatient hospitalizations, which have untrained hospital staff. I found it astounding that I had to give a crash course in Lyme since he was not in the same hospt as his docs. We moved to a different county.
There needs to be a law that all hospital doctors are trained in Lyme treatment, then they perform a Lyme test while my son is on anti biotic, they see a false neg due to the antibiotic, and want to pull him off.
We need legislation so that insurance does not play God, and do more harm then good.
I don't need an ILADS or IDSA cure… Or even a FDA approved cure as I already have a cure for removing, destroying, killing the Bacteria.
I NEED/WANT ILADS to continue to put information out there, and MOST importantly, I need IDSA, CDC, FDA, AMA, big Pharm to get the heck out of my way!!!!!
Further more…. It isn't that Late stage lyme isn't curable, It is a question on if the damage it has done is repairable!
The number one killer (In my opinion) of lyme disease is the denial that it exist and the possibility that people have it. This is what hurt me! This is what sent me on a 5 year, out of the way, almost no return path.
And if it wasn't for IDSA, and CDC I would have been out maybe a year at the most (or less) and back on my feet living a productive life.
I am most thankful for Igenix Labs, and that we as citizens are allowed to pay out of pocket for real test! But this information needs to be mainstream! Doctors need to be allowed to suggest lyme as an option! Instead of denying it because IDSA/CDC says blah blah blah.
I am bitter because my condition/position could have been avoided!
I however am and will move on and return to a full life because of Rife, and the damage for most part was reversible. However I will always harbor bitterness and saddness for all those who have lost their lives, or to those who have lost the lives of loved ones due to IDSA's and CDC's neglect and corruption involving lyme disease.
There indeed needs to be change, but In my opinion, there also needs to be restitution and a trial/conviction involving IDSA!
Tim the Rife user.
I'm sure they can ignore us just as well in the virtual world as the real world.
Facebook and the internet are changing things…it's not possible for the IDSA to hide once they have an online presence.
Will they shut it down as other autocrats have? I hope this momentum continues and mobilizes the Lyme community. Perhaps a "Lyme Spring" is beginning!
TREAT HUMANS w/ TICK BORNE INFECTIONS AT LEAST EQUAL TO 'LIVESTOCK' GIVEN EXTENSIVE ANTIBIOTICS (for profit) – IN PREVENTION OF SEVERE CHRONIC DEBILITATING DISEASE, EVEN DEAD "STOCK"!!!
1. Court wins at all levels
2. A couple influential politicians
3. Well known Hollywood stars active
4. A tick disease game
5. Multi-Asssociations colaberatives
6. Streamlined medical protocols
7. A magic pill
NOT Only am I going to suffer from this disease most likey the rest of life with hopes of remission, that the MD's (25+) misdiagnosed me, that the state has given licensing too, I am very sick but my child and husband aso has to go through this horrible disease. Then I blame the NY CDC testing being so spotty that my resuts came back negative so all md's acted according MISDIAGNOSING ME, after 3 years of treatment (2009-now)I am holding it at bay, not even close to where my heath was before I got the disease and child doen't remember a heathly Mom (got sick in eary 2000's infancy). So this disease doesn't only take away a good healthy person from the home but aso income that can be going towards college – food – etc as insurance decides not to pay after 28 days acording to IDSA guideines. Boy IF one of you from the IDSA or Congress coud walk in my shoes for a day! Something needs to change – we the people need to make the change.
This has not gone "viral". It's just a facebook page. Viral means it hits other media outlets.
You want this to go viral? Get this to the mainstream media. Call NBC, get it on the news. Do what you can in your local area because believe me, they will soon close this down and all of our comments will be deleted. It will be like it never happened.
MAKE THIS THING REALLY GO VIRAL!!!
I have already given complete proof of chronic lyme to top/famous IDSA Dr.'s (complete records/cdc pos. then complete remission with lab work, then ten years later cdc pos while living in concrete jungle/complete cd57 off the charts 10 years apart/ residential records with proof/ etcs….._) and exchanged lab results, e-mails etc…… with IDSA Dr.s and it is pointless. Dead end. They are all mugals period. Waste of time.
Get active locally and with Lyme organizations. Don't waste your energy on IDSA. Ignore them. Giving them media attention is a bad idea. They must be circumvented. This is all a bad idea! Go AROUND the road block. Nothing to gain here.