Re: we need to form groups

[Guest guest]

you are absolutely right. we need numbers this way we cant be ignored. how about

a trip to nw york or washington? dont think the media could overlook that could

they? of course showing up at dr jones hearing would be a good start and a

chance for plannning. ill be there. kurt.

eric_s11050 <eric_s11050@...> wrote: if we are to get people to

listen and change their minds about lyme

then we must do so in groups...long island would be one group and new

jersey would be another...all of the states would have to have thier

own group...all groups must share there info we each other and when a

call to battle arises we can use our numbers to get our point

across..where I live we have lila support group...the attendnce has

not been good so it needs to be straingthened..if we look at the aids

crises and the group called act up...we see that they were willing to

go to jail to get there point across..the media is not going to help

us...so that is my thought...also there are alot of people doing

things to help...others may not see it but they are...to me I feel

that it is now time to come together for battle...but how is the

question...

eric

[Guest guest]

OK, (and everyone else) - how do we do this?

There are Lyme support groups all over the place. I am assuming they are, for

the most part, isolated, run by individuals, and not part of any national group.

Am I right in assuming that they mostly provide information to LD patients?

along with emotional support?

Do we have an existing National political group, involved in advocating for LD

patient rights, as well as lobbying for government dollars for more research?

If not, perhaps it is time to form one, or to expand on one of the existing

groups currently acting on a state level.

The way I see it, we need to establish groups of, essentially, activists, in

every state; and they need to be part of a National body. We need to be able to

quickly mobilize these groups so that we can act in numbers.

Proposed Agenda (please add to it):

1. Preserve the patients' right to choose to be treated for chronic LD.

2. Protect our LLMDs from disciplinary action by their state medical

boards.

3. Secure government funding for the advancement of LD research.

4. Advocate for insurance coverage for patients choosing either standard of

care - ILADS or IDSA.

So, I admit to complete ignorance of existing strategies. If anyone knows of

any of the following, can you please clue me in? I want to help.

Does anyone know of:

1. an existing national group with an agenda similar to the above?

2. existing state groups with agendas similar to the above?

3. existing state groups that may wish to belong to a similar group acting at a

national level?

4. existing support groups that may be willing to be involved in a politically

active

group? (This can be anything from just being counted, to writing letters,

to

attending Dr. ' hearings, to providing community education, to

making phone calls, to marching on Washington - whatever the individual is

able to do.)

5. any individuals who may be willing and able to assist in administrating such

groups? (I'll volunteer, at any level.)

6. any individuals who may wish to become members of such groups?

I honestly believe that it is time for the tide to turn. But we have to turn

it.

eric_s11050 <eric_s11050@...> wrote: if we are to get people to listen and

change their minds about lyme

then we must do so in groups...long island would be one group and new

jersey would be another...all of the states would have to have thier

own group...all groups must share there info we each other and when a

call to battle arises we can use our numbers to get our point

across..where I live we have lila support group...the attendnce has

not been good so it needs to be straingthened..if we look at the aids

crises and the group called act up...we see that they were willing to

go to jail to get there point across..the media is not going to help

us...so that is my thought...also there are alot of people doing

things to help...others may not see it but they are...to me I feel

that it is now time to come together for battle...but how is the

question...

eric

The book, Confronting Lyme Disease: What Patient Stories Teach Us, is now

available through Amazon and Booksurge Bookstores. Please visit the

official website at http://www.confrontinglyme.com for more information.

[Guest guest]

just start sending me info ill be more than happy to put iit all together then

we pick a place to meet the more the merrier. been ready to go kind of like

chomping at the bit! kurt. ill be away for a week hope to talk more when i get

back.

DeMarco <ponyrubs@...> wrote: OK, (and everyone else)

- how do we do this?

There are Lyme support groups all over the place. I am assuming they are, for

the most part, isolated, run by individuals, and not part of any national group.

Am I right in assuming that they mostly provide information to LD patients?

along with emotional support?

Do we have an existing National political group, involved in advocating for LD

patient rights, as well as lobbying for government dollars for more research? If

not, perhaps it is time to form one, or to expand on one of the existing groups

currently acting on a state level.

The way I see it, we need to establish groups of, essentially, activists, in

every state; and they need to be part of a National body. We need to be able to

quickly mobilize these groups so that we can act in numbers.

Proposed Agenda (please add to it):

1. Preserve the patients' right to choose to be treated for chronic LD.

2. Protect our LLMDs from disciplinary action by their state medical boards.

3. Secure government funding for the advancement of LD research.

4. Advocate for insurance coverage for patients choosing either standard of

care - ILADS or IDSA.

So, I admit to complete ignorance of existing strategies. If anyone knows of any

of the following, can you please clue me in? I want to help.

Does anyone know of:

1. an existing national group with an agenda similar to the above?

2. existing state groups with agendas similar to the above?

3. existing state groups that may wish to belong to a similar group acting at a

national level?

4. existing support groups that may be willing to be involved in a politically

active

group? (This can be anything from just being counted, to writing letters, to

attending Dr. ' hearings, to providing community education, to

making phone calls, to marching on Washington - whatever the individual is

able to do.)

5. any individuals who may be willing and able to assist in administrating such

groups? (I'll volunteer, at any level.)

6. any individuals who may wish to become members of such groups?

I honestly believe that it is time for the tide to turn. But we have to turn it.

eric_s11050 <eric_s11050@...> wrote: if we are to get people to listen and

change their minds about lyme

then we must do so in groups...long island would be one group and new

jersey would be another...all of the states would have to have thier

own group...all groups must share there info we each other and when a

call to battle arises we can use our numbers to get our point

across..where I live we have lila support group...the attendnce has

not been good so it needs to be straingthened..if we look at the aids

crises and the group called act up...we see that they were willing to

go to jail to get there point across..the media is not going to help

us...so that is my thought...also there are alot of people doing

things to help...others may not see it but they are...to me I feel

that it is now time to come together for battle...but how is the

question...

eric

The book, Confronting Lyme Disease: What Patient Stories Teach Us, is now

available through Amazon and Booksurge Bookstores. Please visit the

official website at http://www.confrontinglyme.com for more information.

[Guest guest]

,

I am a board member of the Texas Lyme Disease Association and we are currently

reorganizing and starting over from scratch...so we are in the process of doing

exactly what you are talking about.

I know there is a National Lyme Disease association

www.lymediseaseassociation.org and they are very politically active. They are

the people that recently met with the CDC and had very favorable face to face

meetings about overhauling their approach to LD...baby steps but the national

organizer Pat said it was a very positive meeting. There is a story about

that in the Public Health Alert (issue 2) archives. www.publichealthalert.org

The national LDA probably has contact information for the various state groups

that are affiliated with them...but there are also a TON of groups that are NOT

affiliated with the national group; they are more independant. There are pros

and cons to be affiliated to the national group--but sometimes it may be worth

setting our differences aside and truly UNITING for the political good of all.

Now I dont really understand all the reasons some choose not to affiliate with

the LDA...maybe someone here knows better....but just like in church...sometimes

it is best to set aside " denominational differences " for the better good of the

whole church, world wide, to accomplish a greater work. Does that make sense?

I would be VERY interested to join in if someone is planning on starting a

group or something about organizing/mobilizing state support

groups/activism and getting us all mobilized.

, is that what you are planning to do?

I think this is a VERY needed and essential part of the Lyme

community--ORGANIZATION AND MOBILIZATION!! Who knows, if given an invite, the

national LDA leader might be willing to join in and help us get better networked

on anational level....but baby steps...we need the various support groups in

each state to organize a STATE LDA. Logistically this would just be easier to

dissiminate info and calls to action.

If all the LDA had to do was make contact to 50 State LDAs, then the state

LDAs could mobilize the independant LD support groups in their state. It would

eventually work like a well oiled machine...and THEN we could " march on

washington " effectively.

, if that is what you are planning on doing, I can get the TxLDA on board

with you!

I could also give you the various TX support group leaders info...now if we

could get other states to follow suit, we start pulling this all together!

I really believe the TIME IS NOW for the Lyme Community to stand up and be

counted!

Dawn

[Guest guest]

Hello everyone. I am learning through what I hear from others and through

personal experience that small groups often work better. Unfortunately often

when groups get too big, they become infiltrated with those who appear to be

doing good but in the long run all the efforts are somehow sabotaged, groups

are broken up (divide and conquer), etc. Many times legislation....say

concerning the CDC and other government agencies (which are essentially a

collection of corporations) get us no where. The CDC, NIH, etc.....are not

stupid or ignorant. They know what is occurring and if one pays attention you

can see that much of what we are enduring, they have caused or perpetuated.

So, why would we want to appropriate more money to them to intiate more bogus

studies.

I truely believe that we need to fund private researchers who are

uncontrolled by grants from the government. I know of a researcher at the

moment whom I am thinking of ways to raise money for. I know personally what

she is researching, why and that this scientist is of very high integrity. I

know her personally.

You see what I'm trying to say? Instead of putting all of our efforts into

getting government agencies to conduct or fund research....we don't know the

individuals planning or conducting the research or their motives. When

everything gets too big, all gets lost.

I personally don't want to " officially " join any large groups which have

rules, contracts, etc but I see nothing wrong with working independantly with

them in areas which we agree on. We have to be careful that everyone doesn't

join one group. Large groups are one way of controlling an outcome.....many

times not for our benefit

Margie

Dawn Irons <gratefulwife2brad@...> wrote:

,

I am a board member of the Texas Lyme Disease Association and we are

currently reorganizing and starting over from scratch...so we are in the

process of doing exactly what you are talking about.

I know there is a National Lyme Disease association

www.lymediseaseassociation.org and they are very politically active. They are

the people that recently met with the CDC and had very favorable face to face

meetings about overhauling their approach to LD...baby steps but the national

organizer Pat said it was a very positive meeting. There is a story about

that in the Public Health Alert (issue 2) archives. www.publichealthalert.org

The national LDA probably has contact information for the various state groups

that are affiliated with them...but there are also a TON of groups that are NOT

affiliated with the national group; they are more independant. There are pros

and cons to be affiliated to the national group--but sometimes it may be worth

setting our differences aside and truly UNITING for the political good of all.

Now I dont really understand all the reasons some choose not to affiliate with

the LDA...maybe someone here knows better....but just like in

church...sometimes it is best to set aside " denominational differences " for the

better good of the whole church, world wide, to accomplish a greater work. Does

that make sense?

I would be VERY interested to join in if someone is planning on starting a

group or something about organizing/mobilizing state support

groups/activism and getting us all mobilized.

, is that what you are planning to do?

I think this is a VERY needed and essential part of the Lyme

community--ORGANIZATION AND MOBILIZATION!! Who knows, if given an invite, the

national LDA leader might be willing to join in and help us get better

networked on anational level....but baby steps...we need the various support

groups in each state to organize a STATE LDA. Logistically this would just be

easier to dissiminate info and calls to action.

If all the LDA had to do was make contact to 50 State LDAs, then the state

LDAs could mobilize the independant LD support groups in their state. It would

eventually work like a well oiled machine...and THEN we could " march on

washington " effectively.

, if that is what you are planning on doing, I can get the TxLDA on

board with you!

I could also give you the various TX support group leaders info...now if we

could get other states to follow suit, we start pulling this all together!

I really believe the TIME IS NOW for the Lyme Community to stand up and be

counted!

Dawn

[Guest guest]

Awesome information, Dawn - thank you very much.

Yes, your vision matches my own. I don't know, but I would imagine that some

differences between the groups may be re: putting money toward caring for the

sick vs putting money toward political activism. While both goals are

important, I want to focus on the latter, because I see it as the only way we

will ALL, eventually, get the care we need. We cannot sustain an effort to care

for our sick when we continue to be sick ourselves.

I guess the next step, for me, would be to contact the National Lyme Disease

Association and see what they're all about, whether they'd be ammenable to being

the central clearinghouse of information to be disseminated to state, then

local, groups. Then we need to identify local and state groups, found new

groups where needed, and get everyone hooked up.

I agree that the time is NOW. We have had some favorable media support. The

Open Eye documentary will be coming out sometime in 2007 (assuming we manage to

fund it). The new research center will be coming on line (assuming we manage to

fund it). If we act in numbers, we will get media attention, and this can

lead to corporate sponshorships, private donations, etc.

The media wants video, sound bites, people showing up and waving signs... So, I

do see this organization as a way to ultimitely bring us together physically, as

needed. If we need letters sent, we will be able to quickly mobilize

letter-writers. Phone calls needed? We can flood the lines.

Wouldn't it be fun to flood the IDSA lines for a week or so?

Thanks again, Dawn. I'll look over that website later today, and see if they

might be of help to us, or if we can be of help to them. We can do this.

Dawn Irons <gratefulwife2brad@...> wrote: ,

I am a board member of the Texas Lyme Disease Association and we are currently

reorganizing and starting over from scratch...so we are in the process of doing

exactly what you are talking about.

I know there is a National Lyme Disease association

www.lymediseaseassociation.org and they are very politically active. They are

the people that recently met with the CDC and had very favorable face to face

meetings about overhauling their approach to LD...baby steps but the national

organizer Pat said it was a very positive meeting. There is a story about

that in the Public Health Alert (issue 2) archives. www.publichealthalert.org

The national LDA probably has contact information for the various state groups

that are affiliated with them...but there are also a TON of groups that are NOT

affiliated with the national group; they are more independant. There are pros

and cons to be affiliated to the national group--but sometimes it may be worth

setting our differences aside and truly UNITING for the political good of all.

Now I dont really understand all the reasons some choose not to affiliate with

the LDA...maybe someone here knows better....but just like in church...sometimes

it is best to set aside " denominational differences " for the better good of the

whole church, world wide, to accomplish a greater work. Does that make sense?

I would be VERY interested to join in if someone is planning on starting a

group or something about organizing/mobilizing state support

groups/activism and getting us all mobilized.

, is that what you are planning to do?

I think this is a VERY needed and essential part of the Lyme

community--ORGANIZATION AND MOBILIZATION!! Who knows, if given an invite, the

national LDA leader might be willing to join in and help us get better networked

on anational level....but baby steps...we need the various support groups in

each state to organize a STATE LDA. Logistically this would just be easier to

dissiminate info and calls to action.

If all the LDA had to do was make contact to 50 State LDAs, then the state

LDAs could mobilize the independant LD support groups in their state. It would

eventually work like a well oiled machine...and THEN we could " march on

washington " effectively.

, if that is what you are planning on doing, I can get the TxLDA on board

with you!

I could also give you the various TX support group leaders info...now if we

could get other states to follow suit, we start pulling this all together!

I really believe the TIME IS NOW for the Lyme Community to stand up and be

counted!

Dawn

[Guest guest]

Margie,

Small groups work well for some things, but small groups do not attract media

attention or the sort of money needed to make a difference for all of us. Do

you see how often the size of ILADS is compared, unfavorably, to the size of the

IDSA? Do you think that every IDSA member agrees with the IDSA policies? Yet

they are counted, and their numbers trotted out to sway public opinion.

No one has suggested funding NIH, ISDA, CDC, or whatever. As a group, we can

fund private research, with researchers we trust. That's the beauty of being

the one providing the funding.

Of course, there is always the possibility of failure - no argument there. But

nothing ventured, nothing gained. We have been ignored for decades. I truly

believe we MUST act as one if we want to be heard.

Marjorie Tietjen <daystar1952@...> wrote: Hello everyone. I am learning

through what I hear from others and through personal experience that small

groups often work better. Unfortunately often when groups get too big, they

become infiltrated with those who appear to be doing good but in the long run

all the efforts are somehow sabotaged, groups are broken up (divide and

conquer), etc. Many times legislation....say concerning the CDC and other

government agencies (which are essentially a collection of corporations) get us

no where. The CDC, NIH, etc.....are not stupid or ignorant. They know what is

occurring and if one pays attention you can see that much of what we are

enduring, they have caused or perpetuated. So, why would we want to appropriate

more money to them to intiate more bogus studies.

I truely believe that we need to fund private researchers who are

uncontrolled by grants from the government. I know of a researcher at the

moment whom I am thinking of ways to raise money for. I know personally what

she is researching, why and that this scientist is of very high integrity. I

know her personally.

You see what I'm trying to say? Instead of putting all of our efforts into

getting government agencies to conduct or fund research....we don't know the

individuals planning or conducting the research or their motives. When

everything gets too big, all gets lost.

I personally don't want to " officially " join any large groups which have

rules, contracts, etc but I see nothing wrong with working independantly with

them in areas which we agree on. We have to be careful that everyone doesn't

join one group. Large groups are one way of controlling an outcome.....many

times not for our benefit

Margie

Dawn Irons wrote: ,

I am a board member of the Texas Lyme Disease Association and we are

currently reorganizing and starting over from scratch...so we are in the

process of doing exactly what you are talking about.

I know there is a National Lyme Disease association

www.lymediseaseassociation.org and they are very politically active. They are

the people that recently met with the CDC and had very favorable face to face

meetings about overhauling their approach to LD...baby steps but the national

organizer Pat said it was a very positive meeting. There is a story about

that in the Public Health Alert (issue 2) archives. www.publichealthalert.org

The national LDA probably has contact information for the various state groups

that are affiliated with them...but there are also a TON of groups that are NOT

affiliated with the national group; they are more independant. There are pros

and cons to be affiliated to the national group--but sometimes it may be worth

setting our differences aside and truly UNITING for the political good of all.

Now I dont really understand all the reasons some choose not to affiliate with

the LDA...maybe someone here knows better....but just like in

church...sometimes it is best to set aside " denominational differences " for the

better good of the whole church, world wide, to accomplish a greater work. Does

that make sense?

I would be VERY interested to join in if someone is planning on starting a

group or something about organizing/mobilizing state support

groups/activism and getting us all mobilized.

, is that what you are planning to do?

I think this is a VERY needed and essential part of the Lyme

community--ORGANIZATION AND MOBILIZATION!! Who knows, if given an invite, the

national LDA leader might be willing to join in and help us get better

networked on anational level....but baby steps...we need the various support

groups in each state to organize a STATE LDA. Logistically this would just be

easier to dissiminate info and calls to action.

If all the LDA had to do was make contact to 50 State LDAs, then the state

LDAs could mobilize the independant LD support groups in their state. It would

eventually work like a well oiled machine...and THEN we could " march on

washington " effectively.

, if that is what you are planning on doing, I can get the TxLDA on

board with you!

I could also give you the various TX support group leaders info...now if we

could get other states to follow suit, we start pulling this all together!

I really believe the TIME IS NOW for the Lyme Community to stand up and be

counted!

Dawn

[Guest guest]

Yes...but look at the integrity of ILADS as opposed to ISDA. That's the point

I'm trying to make. I understand what you are saying and as long as we work

together on some things but maintain our rights to act on certain things

independantly, I think it can work.There is no one right way to do something .

We don't want to put all our eggs in one basket.

Can someone explain to me more about the Fallon Study...how it was

funded...where the money came from and what the results are and if they have

become available yet?

Margie

DeMarco <ponyrubs@...> wrote:

Margie,

Small groups work well for some things, but small groups do not attract media

attention or the sort of money needed to make a difference for all of us. Do

you see how often the size of ILADS is compared, unfavorably, to the size of

the IDSA? Do you think that every IDSA member agrees with the IDSA policies?

Yet they are counted, and their numbers trotted out to sway public opinion.

No one has suggested funding NIH, ISDA, CDC, or whatever. As a group, we can

fund private research, with researchers we trust. That's the beauty of being

the one providing the funding.

Of course, there is always the possibility of failure - no argument there.

But nothing ventured, nothing gained. We have been ignored for decades. I truly

believe we MUST act as one if we want to be heard.

Marjorie Tietjen <daystar1952@...> wrote: Hello everyone. I am learning

through what I hear from others and through personal experience that small

groups often work better. Unfortunately often when groups get too big, they

become infiltrated with those who appear to be doing good but in the long run

all the efforts are somehow sabotaged, groups are broken up (divide and

conquer), etc. Many times legislation....say concerning the CDC and other

government agencies (which are essentially a collection of corporations) get us

no where. The CDC, NIH, etc.....are not stupid or ignorant. They know what is

occurring and if one pays attention you can see that much of what we are

enduring, they have caused or perpetuated. So, why would we want to appropriate

more money to them to intiate more bogus studies.

I truely believe that we need to fund private researchers who are uncontrolled

by grants from the government. I know of a researcher at the moment whom I am

thinking of ways to raise money for. I know personally what she is researching,

why and that this scientist is of very high integrity. I know her personally.

You see what I'm trying to say? Instead of putting all of our efforts into

getting government agencies to conduct or fund research....we don't know the

individuals planning or conducting the research or their motives. When

everything gets too big, all gets lost.

I personally don't want to " officially " join any large groups which have

rules, contracts, etc but I see nothing wrong with working independantly with

them in areas which we agree on. We have to be careful that everyone doesn't

join one group. Large groups are one way of controlling an outcome.....many

times not for our benefit

Margie

Dawn Irons wrote: ,

I am a board member of the Texas Lyme Disease Association and we are

currently reorganizing and starting over from scratch...so we are in the

process of doing exactly what you are talking about.

I know there is a National Lyme Disease association

www.lymediseaseassociation.org and they are very politically active. They are

the people that recently met with the CDC and had very favorable face to face

meetings about overhauling their approach to LD...baby steps but the national

organizer Pat said it was a very positive meeting. There is a story about

that in the Public Health Alert (issue 2) archives. www.publichealthalert.org

The national LDA probably has contact information for the various state groups

that are affiliated with them...but there are also a TON of groups that are NOT

affiliated with the national group; they are more independant. There are pros

and cons to be affiliated to the national group--but sometimes it may be worth

setting our differences aside and truly UNITING for the political good of all.

Now I dont really understand all the reasons some choose not to affiliate with

the LDA...maybe someone here knows better....but just like in

church...sometimes it is best to set aside " denominational differences " for the

better good of the whole church, world wide, to accomplish a greater work. Does

that make sense?

I would be VERY interested to join in if someone is planning on starting a

group or something about organizing/mobilizing state support

groups/activism and getting us all mobilized.

, is that what you are planning to do?

I think this is a VERY needed and essential part of the Lyme

community--ORGANIZATION AND MOBILIZATION!! Who knows, if given an invite, the

national LDA leader might be willing to join in and help us get better

networked on anational level....but baby steps...we need the various support

groups in each state to organize a STATE LDA. Logistically this would just be

easier to dissiminate info and calls to action.

If all the LDA had to do was make contact to 50 State LDAs, then the state

LDAs could mobilize the independant LD support groups in their state. It would

eventually work like a well oiled machine...and THEN we could " march on

washington " effectively.

, if that is what you are planning on doing, I can get the TxLDA on

board with you!

I could also give you the various TX support group leaders info...now if we

could get other states to follow suit, we start pulling this all together!

I really believe the TIME IS NOW for the Lyme Community to stand up and be

counted!

Dawn

[Guest guest]

Hi Margie,

The Fallon study was NIH funded. The results are publicly known but have not yet

been published.

Kay

From: Marjorie Tietjen

Sent: Saturday, October 07, 2006 11:53 AM

Subject: Re: [ ] Re: we need to form groups

>>

Can someone explain to me more about the Fallon Study...how it was

funded...where the money came from and what the results are and if they have

become available yet?

Margie<<

[Guest guest]

Hi...Thanks Kay. Are the results they found going to help us get better

treatment for lyme? What I heard was a bit vague so I guess I'm not sure what

the results were. Are they supposed to be kept quiet till they are published?

Margie

" Kay L. " <b10g7@...> wrote:

Hi Margie,

The Fallon study was NIH funded. The results are publicly known but have not yet

been published.

Kay

From: Marjorie Tietjen

Sent: Saturday, October 07, 2006 11:53 AM

Subject: Re: [ ] Re: we need to form groups

>>

Can someone explain to me more about the Fallon Study...how it was

funded...where the money came from and what the results are and if they have

become available yet?

Margie<<

---------------------------------

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

When will they be published? Anyone know?

At 01:29 PM 10/7/2006, you wrote:

>Hi Margie,

>

>The Fallon study was NIH funded. The results are publicly known but have

>not yet been published.

>

>Kay

>From: Marjorie Tietjen

><mailto: %40>

>Sent: Saturday, October 07, 2006 11:53 AM

>Subject: Re: [ ] Re: we need to form groups

>

> >>

>Can someone explain to me more about the Fallon Study...how it was

>funded...where the money came from and what the results are and if they

>have become available yet?

>

>Margie<<

>

>

>