From patient member to private group members...
July 28, 2017 3:08 PM
Hoping there is already an organized effort with a list so nominations can be made. Don't want the group to be taken over by the wrong people.
My Email- To private group members...
July 28, 2017 3:58 PM
Thanks XXXXX! I’ve been waiting to see this kind of information and missed the announcement.
Since a formal letter is required to nominate someone, which won’t be an easy task for most patients, what I need to know is who is wanting these positions so we can get behind them and not scatter the votes in a nilly willy fashion. No sense in nominating anyone if they don’t want to do it. Also don’t want to miss those who do because we didn’t know.
Do you, or does ILADS, LD.org or LDA have people they’d like to see on the panel?
Please let me know ASAP so I can help patients get us who we want to see there!
Toads need not apply….
LB
Another email from me to private group
July 28, 4:03 PM
Tougher than I thought… so we need to know AND need a written statement from the individual we want to nominate.
QUOTE- "A nomination should include, at a minimum, the following for each nominee: (1) A letter of nomination that clearly states the name and affiliation of the nominee, the basis for the nomination, and a statement from the nominee that indicates that the individual is willing to serve as a member of the Working Group, if selected; (2) the nominator's name, address, and daytime telephone number, and the address, telephone number, and email address of the individual being nominated; and (3) a current copy of the nominee's curriculum vitae or resume, which should be limited to no more than 10 pages."
On Fri, Jul 28, 2017 at 5:24 PM, AfterTheBite <afterthebite@gmail.com> wrote:
Well, here is one nominee informally listed at the very bottom of a Times Union news article from 11 days ago.
QUOTE- "Ahern, who has developed a national reputation, said members of the chronic Lyme disease community have told her she is already on the list."
Or, if you happen to read Senator Gillibrand’s website announcements (she’s in NY in case you’ve never heard of her) on a regular basis you MIGHT have seen this PR. Still no indication of who is being nominated and by whom to represent us.
Why aren’t the “groups”, whoever that may be, not telling us about the decisions they are making, or giving anyone a choice of who they want representing them? This is beginning to look like it’s rigged and/or being buried on purpose. And I really, really, really hope I’m wrong about that because I did let at least one national group know months ago I wanted to know what was going on and was totally ignored.
So, members of the “chronic Lyme disease community”, who else have you decided is "already on the list”, or shall I say on YOUR list?
July 28, 2017 8:10 PM
XXXX said… QUOTE- "I know of no organized lyme group that I would not have faith in to represent us.”
Well, I certainly do, as do many others. And I believe patients should be told (BEFORE this goes nuts) who is being nominated and by whom, from what groups, if any. Who are the groups/doctors, etc. nominating to fill the patient and family members seats, and why are they nominating people without letting patients know or giving everyone a voice or a vote?
Patients should absolutely be informed about what is going on in the event they want to nominate someone else or get behind the current nominees and support them. THAT is an important part of what this was suppose to be about- representing the patients views. THAT is not happening here.
For those who don’t know, this will be the make up of the working group- the public portion...
QUOTE- "The non-federal public members will consist of representatives of the following categories: Physicians and other medical providers with experience in diagnosing and treating tick-borne diseases; scientists or researchers with expertise; patients and their family members; nonprofit organizations that advocate for patients with respect to tick-borne disease."
As you can see, nonprofit organizations have their own seats to fill, as do doctors and researchers, so why are they choosing the patients too? Patients should be able to chose their own representatives, not have them chosen by others, especially unknown groups or individuals. This ongoing sneaky stuff and withholding information really has to stop.
To be clear, I have absolutely NO interest in being any part of this mess. Never have, never will- made that clear years ago- so who is chosen is important to me. I am also asked who I would support because people trust me and know I’ve volunteered for and totally supported all of the major groups for many years (even on this project early on when it was part of the federal bills) and most of the smaller ones too. As many know, some groups are decent, some suck big time and are as ugly as the day is long. Some doctors and researchers, likewise. It DOES matter to me and it should matter to everyone.
My email to XXX & XXXX group leader, same content as was sent to several other group leaders.
From: AfterTheBite [mailto:afterthebite@gmail.com]
Sent: Friday, July 28, 2017 3:12 PM
To: XXX & XXXX
Subject: TBD Working Group
Please let me know ASAP who is being nominated for the TBD Working Group. Thank you.
Lucy Barnes
Response
On Jul 28, 2017, at 6:40 PM, XXXX wrote:
Why?
My Response
From: AfterTheBite [mailto:afterthebite@gmail.com]
Sent: Friday, July 28, 2017 4:25 PM
To: XXXX
Cc: XXXX
Subject: Re: TBD Working Group
Mainly because patients should know who is being nominated to represent them.
Their response back to me...
On Jul 28, 2017, at 8:15 PM, XXXX wrote:
The concern is not patients knowing who we nominate, but rather people who are not on our list getting miffed. People love to get miffed at us for almost any reason
My response back to them...
July 28, 2017 8:30 PM
Wrong, wrong, wrong in so many ways. GROUPS should not be nominating people for the patient representative seats without patients having a voice in who they want. Or, actually, any other position since this is suppose to be FOR THE PATIENTS best interest.
You aren’t going to tell me or others?
No response back.
LymeNet post- after two other posts were removed, one by poopy and one by me.
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/3/37263?
Another post by poppy...
So its OK if she attacks all the lyme groups in such hotheaded ways, meanwhile alerted all the trolls to nominate themselves?
I am sorry I recently contributed to the lymenet fundraiser. This member has criticized an innocent doctor, put out a public list of doctors without their permission, and now publicly criticized all the lyme groups because they did not tell her their plans, and WHY SHOULD THEY?
This forum has given her a public podium without adequately protecting the rights of others. | From USA | Registered: Mar 2004
In response to email sent to JG today...
CEASE AND DESIST LETTER
RE: Emails to private groups, individuals and public posts
August 5, 2017
Dear Sir or Madam:
This CEASE AND DESIST ORDER is to inform you that your harassing and intimidating actions against me and others is unacceptable. Such behavior should not be tolerated in any way, shape or form. This letter is to demand that your harassment and intimidation must CEASE AND DESIST immediately. Should you continue to pursue these activities in violation of this CEASE AND DESIST ORDER, I will not hesitate to pursue further legal action against you, including, but not limited to, civil action and/or criminal complaints.
Please note that citizens have a right to remain free from intimidating tactics, and I will take the responsibility upon myself to protect that right. Note that a copy of this letter and a record of its delivery will be stored. Note too that it is admissible as evidence in a court of law and will be used as such if need be in the future.
This CEASE AND DESIST ORDER demands that you discontinue and do not at any point in the future under any circumstances do the following to me or my acquaintances: speak to, contact, pursue, harass, attack, strike, bump into, brush up against, push, tap, grab, hold, threaten, telephone (via cellular or landline), instant message, page, fax, email, follow, stalk, shadow, disturb my peace, keep me or others under surveillance, gather information about and/or block others or my movements at home, work, social gatherings or religious functions.
This letter does not constitute exhaustive statement of my position nor is it a waiver of any of others or my rights and/or remedies in this and/or any other related matter. I demand your immediate compliance that all objectionable activity will cease immediately.
Very truly yours,
Lucy Barnes
Sent via Email to johnson0m@yahoo.com