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From Arklatexlyme Staff/ May 26, 2014.

On May 22nd and 23rd, I attended the fourth annual Mayday Lyme Disease Awareness protest.  This year, we directed our voice toward the Infectious Disease Society of America. For two days we gathered outside the IDSA headquarters in Arlington, VA to chant, hold up our signs, and voice our opinion concerning their stance on chronic Lyme Disease, the current treatment guidelines, and their constant denial of the principles of evidence based medicine.


 

Why We Protest Against the IDSA


IDSA’s Guidelines for Lyme Disease:

  • Ignore the principles of evidence based medicine.
  • Discourage physicians from providing treatment to severely ill patients.
  • Dismiss extensive evidence for chronic Lyme disease.
  • Misrepresent expert opinion as science.

The Result:

  • Thousands of patients are misdiagnosed and denied treatment.
  • Thousands remain sick and suffer terribly.
  • Chronically ill patients must pay out of pocket for medically necessary treatment.
  • Thousands of people are devastated financially.
  • Doctors who treat Lyme patients are subject to medical board investigations.

 

Mayday Project organizer and Lyme sufferer, Josh Cutler, wants to make the message perfectly clear so that there is no misunderstanding about what we want from the IDSA.  From his personal Facebook page, Josh explains:

Just so everyone knows, the IDSA will respond with nonsense. We aren’t protesting for the use of long term abx [antibiotic] use

Folks please know we are not fighting for them to give us the OK to use long term abx. While this works for some, it’s not a cure. 

What we want is for them to revise the guidelines, accept persistent Lyme as a diagnoses. This will open the door for people to do research into the chronic form of the disease and hopefully produce a cure.    This is what we ultimately want, not the use of long term abx. While that might help some, that’s not our demand.

It’s a complete revision of the Lyme disease guidelines to accept and acknowledge chronic Lyme.    

Keep this in mind as we continue to storm them. Please keep writing them. Their only response to the news cast was that long term abx are dangerous and an outdated John Hopkins University studied showed that “Chronic Lyme disease” doesn’t exist. 

The protest on the IDSA has only begun. Science will prevail over this nonsense.”

During the protest, IDSA associates refused to talk to the press or make an appearance before our group.  After much negotiation, they allowed Josh Cutler and Allison Hoffmann-Caruana to enter the building .  As our representatives presented the three IDSA agents with documents and a brief narrative of our plight, they said, “We hear you.  We are listening”.  These were the only words spoken by IDSA stewards.

Though the response “we hear you…we are listening” appears to project a sense of acceptance and compassion, we need to remain guarded from allowing generic statements to give us a false sense of hope for a mission that has many miles to go.

Activist Grace Pitschi warns that “organizations and companies who we have protested against often pay lip service by finally saying ” we are listening” or “we are interested in your concerns”.  And then they do nothing as soon as the activists let their guard down. Being an activist means staying vigilent and insistent… and having professional help get solid results.” 

Grace goes on to tell us, from her posting on the Mayday Project Facebook page, “We want to know WHEN the IDSA is going to sit down with us? Where? And who from our group will attend to make sure the meeting is serious and that change is made in writing?  The IDSA is hoping that we will all declare this a victory and go away. We wont! We are stronger and wiser than that.”

We are headed in the right direction, but we need to be consistent by emailing, calling, faxing and notifying the press that we want action.  I am going to give you some very important information obtained from the Mayday Project website .   Please help us all by doing what you can from home.  We must not stop!   See the information, below, on how you can help by contacting these organizations directly.

Here is how you can help:

We need people to post on the IDSA’s Facebook page, sharing the document “Scientific Proof of Chronic Lyme Disease” provided on our website.

 Download “Scientific Proof of Chronic Lyme Disease” here:

 IDSA’s Facebook Page:

https://www.facebook.com/IDSociety

or

https://m.facebook.com/idsaglobalhealth

Hammer the IDSA twitter page, using the hash tag  #revisetheguidelines

https://www.twitter.com/IDSAInfo

We also want people to call (703) 299-0200 demanding a change to the outdated guidelines. Call them from all over the country and world. When you call, use every single option on the menu, talking to everyone you can. Keep calling them!

 Fax “Scientific Proof of Chronic Lyme Disease” to the IDSA at (703)-299-0204.

 Use their website contact page and flood as many of your stories of Chronic Lyme as you can. Let them know how you have followed their protocol for antibiotic therapy and are still sick and bedridden.

http://www.idsociety.org/Contact_Us.aspx

 Here is a list of people we will call and ask them to review our evidence and respond accordingly. If they tell you that they can’t help you, ask them to put you in contact with someone that can. Do not take no for an answer!

 Vice President of Communications:

Diana Olson

(703) 299-0201

 Communications and Public Affairs Officer:

Jennifer Ford

(703) 299-0412

 Sky Opilia  (312) 558-1770

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Comments on: "Lyme Disease Protest: Mayday 2014 A Step In The Right Direction" (2)

  1. Good work. Exciting rally, and it’s getting a lot of airplay. So, kudos to everyone involved. Wish I could have been there but flying from the West Coast was more than I could do right now..

    Just FYI you might want to make a correction in this post. It is not called “John Hopkins University”. It is “JOHNS Hopkins University.” That is, John with an S added. No apostrophe. People there feel the same way we do about folks calling our disease Lyme’s disease. I sort of assume they do not know what they’re talking about. If we are going to protest an establishment such as a university or governmental agency, we should at least spell it correctly so we don’t invalidate ourselves.

  2. Greetings! I’ve been following your weblog for a while now and finally got the bravery to go ahead and give you a shout out from Austin Tx!
    Just wanted to say keep up the fantastic work!

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