UPDATE- March 28, 2018
NEWS FLASH- You can't go to a tire store and demand a lobster dinner and expect to look credible or to be taken seriously. That's not the way things work. When going to a tire store you should expect to get tires, period.
And I, for one, wouldn't want to be in a car that tires were put on after the employees who put on the tires were harassed, kicked and beaten up. That's just not a good idea!
The same applies to a federal working group.
As a bystander (stakeholder) you can't be considered credible while demanding something the working group can not provide. And you can't keep punching them in the nose and expect them to change the rules mid-stream just for you. In fact, they don't have the power to change federal law no matter how much someone screams at them about wanting it done.
And most importantly, you can't expect for the rest of us to get anywhere with these senseless, waste-of-time, ongoing actions.
THAT SAID...
The Mayday Project is STILL trying to rally unsuspecting, sick patients to get them to "WRITE, WRITE, WRITE" to the federal Tick-Borne Disease Working Group in order to hassle members into providing something they don't provide! Again, what's wrong with these people?
And they don't want just "transparency. Making it appear as if they (Mayday Project) don't know any better and can't do the research required on their own (see info below) they are also demanding, or trying to get YOU to demand for them- that the working group share additional information that they don't provide (if it even exists). (See second half of Mayday's post below.)
And if it did exist and the group shared it they would potentially be violating federal law.
If the Mayday Project were really sincere and really wanted specific information, they can do like the rest of us do and write a nice note to the group asking specifically for whatever they want. And then, like all of the rest of us, they can wait for a reply.
Above in their Facebook post the Mayday Project is now requesting information BEYOND what is shared by way of federal law. This is after I pointed out where they could find the ethics info they had been bouncing up and down about last week. HUH?
Do they really expect the TBD group to stop what they are doing and/or break the rules for this fool's folly? (The lobster dinner in the tire store?)
Please don't let a handful of uninformed people with some off-the-wall agenda push you into doing their dirty work for them, and/or making all Lyme patients look like nut cases because of these senseless actions. I am sure all of us can find better things to do with our time.
Thank you!
Lucy Barnes
Additional Information
The Federal Advisory Committee Act (FACA) is a Federal law that governs the establishment and operation of advisory committees. It is implemented Government-wide by the General Services Administration (GSA), which has issued regulations and guidance. A overview of the FACA can be found here.
The purpose of the FACA is to ensure that the public has knowledge of and an opportunity to participate in meetings between Federal agencies and groups that the agency either has established, or manages and controls for the purpose of obtaining group advice and recommendations regarding the agency’s operations or activities.
The FACA requires that such groups be chartered, that their meetings be announced in advance and open to the public, and that their work product be made available to the public. The work product can be found here.
