Why Lyme Patient Advocates Should Absolutely Make Lyme Policy 

Here is a link to the article.  Don’t hurt yourself rolling your eyes if you read it.  I think I strained something.  

The role of patient advocates in Lyme disease policy should be limited

According to the latest set of idjits, Lyme patient advocates should not make Lyme policy because 

1. We read too much crap on the internets. “While patient research can often be helpful to both patients and informative for health providers, it becomes problematic when there is a preponderance of non-scientific or non-peer reviewed information online.”  

Apparently these “writers” do not realize that it’s not too hard to find the research journals and the research articles and read those.  Maybe not everyone can understand it, but you get pretty good at understanding how to correctly research a subject when death is on the line.  

Admit it.  You read that in Vizzini’s voice didn’t you?  

As you can tell by their comment section (and by the fact they shut it down), these days Lyme patient advocates and what they write on the internet outnumber the crud articles the half-truth-writers put out.  

2. We’re dumb.   “Furthermore, the general public is not as adept as experts at assessing risks of treatment or critically assessing scientific research.”

Talk about the least self-aware statement I have seen in a while.  

3. And by patient advocates they mean patients.  “However, the voices of patients must not trump evidence-based science in the development of health policy.”  

The people trying to separate patient from expert become pretty obvious after reading as many Lyme articles as I have.  I become very suspicious of those who do it because there is really only one reason TO do that: Make it seem like they can never be one and the same.  

In my experience, (and I am pretty sure I know more Lyme patients than the writers do), the average Lyme patient has been educated by some of the top experts in the field.  Some of the experts have had Lyme themselves. So not only do we have the input of someone who knows the disease personally, they also have been learning about the disease from people like: 

 Dr. Willy Burgdorfer who believed in persistence and that the current state of patient care for Lyme disease was crap.  Oh.  He also discovered that Lyme was caused by Borrelia … 

Dr. Eva Sapi: Lyme patient and researcher who has made some pretty awesome breakthroughs over the years.

The late Dr. Burton Waisbren, a founding member of the IDSA.  Yes, that says IDSA. You should read what he thought about the IDSA guidelines on Lyme.  Wee-Ow.   Click Here To Read His Critique 

So if they don’t think patient advocates should make policy–Who else should do it?

Certainly not the people who have been doing it the last 30 years.  We wouldn’t even be in this situation if they hadn’t screwed up the science and, on top of it, lied about it.  
Which set of people would you trust are more careful when writing policy so it is in the best interest of the public?  The people with conflicts of interest, those who have anything at all to gain or lose monetarily?  Those who have lied about what the science, sometimes their OWN science, has shown?  Those who try to hide or lie about other research?  

I know who I would trust: Those who will be directly affected by the new policy, those who were directly affected by the old policy, and the experts who have seen and felt all aspects of the disease.  This group is exactly who I would trust.  And those people are Lyme patient advocates. 

Maybe these writers were “taught the crazoversy.”  Maybe they just didn’t do enough research.  They should know better.

They should be more careful about something this important.  

Writers like these two don’t even realize they have been taken in by the line, so much so they can sleep at night thinking they did the right thing.  I have seen tougher people brought down by smaller mistakes.  

I hope McPhail and Shelley can live with themselves once they realize what they  have become a part of:  The perpetual disparaging, lying, and bullying towards those who are living breathing examples of the utter failure of the IDSA Guidelines.  They’re pissed they screwed up and so they shoot the messenger, using you as their bullets. 

Moral of the story: Stop being a tool.  

Sorry.  You know I just couldn’t resist that. 

–Loon Out 

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