Re: DOUBTS ABOUT THE NY HEARINGS

[Guest guest]

This will only answer one of your questions. But it's the best I can do

right now. Please let us know if you find out more.

Robynn

[ ] DOUBTS ABOUT THE NY HEARINGS

>

> I am a memeber of a Michigan support group. I and others aaret hinking

about cancelling plans to attend the hearings. We have made several

inquiries as to a few specifics and nobody is willing to answer us. I do

not want to start any flame wars or be villified here- I think my questions

are very legitimate:

>

> 1) What experts will be testifying at the hearings, for both sides (not

just who was invited).

> 2) Will any legislation be discussed at the hearings?

> 3) Is it true the LDF was not invited?

> 4) Will the Lyme Alliance be represented at the hearings?

> 5) Does someone have an outline of the hearing schedule?

> 6) Will patients be allowed to speak?

>

> Someone told me Ellen Lubarsky is handling this. Ellen, could you

please give us some answers? I am a little leery about traveling hundreds

of miles without the full story. Why all the secrecy? I feel a little

demoralized. Anyone have the full story here? Thanx in advance.

>

>

> " It was the best of times. It was the worst of times.. "

>

>

[Guest guest]

-Hi Rita,

I spoke with Lara and in Gottried's (sp) office today and was

told the same list as you with a couple of exceptions. This was at

noon today....Wed.

I was told Liegner is confirmed and that Dottweiler (sp) is tentative.

I cannot spell, please overlook this but you can probably make sense

of it.

Inveited to speak:

Fallon

Bransfield

Shapiro

Dotweiler

Showen

Barbour

Shutzer

Bransfield

Someone (unknown at this time) from Dept. of Health

Pat

Bach

People (unknown now) who applied to speak

So, no, Lyme Alliance and are not speaking as " invited "

speakers, if this list is correct and held.

Just a thought, it occurs to me that " how " these people are

interviewed and " cross examined " (for want of a better word) is at

least as important and significant as those that speak. One can hope

or influence this process, perhaps. Personally, I have taken some

initiative in this, however humble. I am concerned that medical

ethics is not being convered by any " expert " , as an example.

As I am no longer in contact with spinlyme, perhaps you would want to

post this there. I will go over latter to sci. med and respond to

you.

I was told that it is very possible that " experts " will not confirm

until just before the hearings. So, a final list is not possible to

obtain, only one " in process " , according to Lara.

I will update this list next Monday (so a week's notice is possible

for those with considerations of cheaper (not cheapest) airfares. Of

course, if you or Ellen take that initiative (as you have better

contacts) great, then I won't.

For myself, one person's opinion only, I hate to see patients who

have limited resources of money and time, particularly at the

holidays, particularly with these economic crunch times, use those

resources for what seems to me (only my opinion) to attend the

hearings.

There appears (please correct me if I am wrong) to be little role,

other than body presence, for the attendee's. Perhaps a telegram sent

to the chairperson, with some content or point of view, would have

just as much effect. Or, telegrams to those on the panel sympathetic

to our " cause " , gratifutde for their attention to the patient's

plight or something , might be useful. Or, if those from out of

state would contribute a quarter of the air ticket amount to a fund

which could be compiled to have the hearings taped, or, ads placed in

papers, or telegrams sent to major papers asking them to review the

hearings, something like that which could be followed by

an " informed " local advocate accompanying them or " courting " them

with articles to the patient's point of view, that might be money and

energy better spent. I am only brainstorming here.

For those for whom room and board cost are an issue, but, who wish to

attend, I can be of some assistance.

Deborah

deborah12060@...

-- In @y..., " Robynn " <nebneb@w...> wrote:

> This will only answer one of your questions. But it's the best I

can do

> right now. Please let us know if you find out more.

> Robynn

>

> [ ] DOUBTS ABOUT THE NY HEARINGS

>

>

> >

> > I am a memeber of a Michigan support group. I and others aaret

hinking

> about cancelling plans to attend the hearings. We have made several

> inquiries as to a few specifics and nobody is willing to answer

us. I do

> not want to start any flame wars or be villified here- I think my

questions

> are very legitimate:

> >

> > 1) What experts will be testifying at the hearings, for both

sides (not

> just who was invited).

> > 2) Will any legislation be discussed at the hearings?

> > 3) Is it true the LDF was not invited?

> > 4) Will the Lyme Alliance be represented at the hearings?

> > 5) Does someone have an outline of the hearing schedule?

> > 6) Will patients be allowed to speak?

> >

> > Someone told me Ellen Lubarsky is handling this. Ellen, could

you

> please give us some answers? I am a little leery about traveling

hundreds

> of miles without the full story. Why all the secrecy? I feel a

little

> demoralized. Anyone have the full story here? Thanx in advance.

> >

> >

> > " It was the best of times. It was the worst of times.. "

> >

> >

[Guest guest]

,

I frankly do not at this point know who will be testifying for both sides.

Names have been submitted to Lara Kassel, as per the FAIM website instructions,

and invitations have been sent or will be sent . I know of only two people who

have received invitations thus far.

However, if and when I do know who was ultimately invited, I do not believe the

names should be put out on the internet. We do not want to advertise our

speakers to the other side. Not only does that help them prepare their

arguments, but more importantly it gives Steere/Dattwyler et al a chance to

call the medical,scientific or government institutions that employ these

speakers. Suddenly our speakers become " unavailable " to come to the hearing.

2) No legislation will be discussed at the hearing. This hearing is only about

OPMC harassment of our Lyme doctors. The legislature has oversight power over

the OPMC and we want them to stop the OPMC from harassing our doctors.

There will be another hearing in January that is aimed ultimately at supporting

legislation to reform the way the OPMC works. This legislation would come too

late to help our doctors who are presently under the gun with the OPMC.

However, it would protect them from being harassed again in the future, so we

are supporting that. The hearing in January will be mostly legal and technical

testimony and is being attended by a number of groups, not just Lyme groups.

3) I do not know if the LDF was invited or not. I want to make it clear that I

and the other NY activists and the LDA are NOT doing the inviting. Please

reread the announcement by the Assembly Health Committee which is posted on the

FAIM site www.faim.org You will see that the procedure is that everybody who

wanted to speak was asked to write to Lara Kassel, an Assembly aide, and that

the Assembly Committee would decide who would be invited. THere are people who I

know asked to speak and have not yet gotten invitations. Whether that means

they are not invited or that the invitations have not arrived yet, I have no

idea. I do not know if and the LDF applied to speak. I do know that on

November 1st, in response to a post from in which she said she felt we

were excluding her, I did send her a note saying that was not my intention and

that if she wanted to speak she should contact Lara Kassel. I don't know how

else to get the point across. Smoke signals?

4) I have no idea if the Lyme Alliance will be represented at the hearings for

the reason I just outlined.

5) Neither I nor anyone I am in close touch with has a schedule of the hearing.

I know that we have submitted the names of many scientists and doctors and

patients whom we think would be good speakers. I am sure many other people

have also submitted names. Since the purpose of the hearing is to explore the

scientific controversy (remember we are asking them to ultimately affirm that

Lyme science is controversial so the OPMC should not be taking sides) it is

likely that it will be heavily weighted toward scientists and doctors.

6) AHA. A question I can answer (I think). Yes patients will be able to

testify if they have submitted their request to Lara Kassel and are chosen by

the committee. I found out today that there is a very slight chance that

patients who have not been invited to speak will get a chance to tell their

stories at the end. Please don't come with the expectation that you will be

able to do that, since the chance is so slight and depends on free time at the

end of the hearing.

I hope these answers help.

Ellen

In @y..., laurastiller@y... wrote:

>

> I am a memeber of a Michigan support group. I and others aaret hinking

about cancelling plans to attend the hearings. We have made several inquiries

as to a few specifics and nobody is willing to answer us. I do not want to

start any flame wars or be villified here- I think my questions are very

legitimate:

>

> 1) What experts will be testifying at the hearings, for both sides (not just

who was invited).

> 2) Will any legislation be discussed at the hearings?

> 3) Is it true the LDF was not invited?

> 4) Will the Lyme Alliance be represented at the hearings?

> 5) Does someone have an outline of the hearing schedule?

> 6) Will patients be allowed to speak?

>

> Someone told me Ellen Lubarsky is handling this. Ellen, could you please

give us some answers? I am a little leery about traveling hundreds of miles

without the full story. Why all the secrecy? I feel a little demoralized.

Anyone have the full story here? Thanx in advance.

>

>

> " It was the best of times. It was the worst of times.. "

[Guest guest]

This is silly. When the doctors call Gottfried's office to confirm whether

or not they're going to be at the hearing, I'm sure they ask who else is

going to be there. If I can call and find out who's going to be there,

don't you think others will?? Again, this is PUBLIC knowledge that ANYONE

can find out. We do not have an inside track here. " The opposition "

certainly knows how to use the phone and can certainly call the office just

as you and I can.

Robynn

[ ] Re: DOUBTS ABOUT THE NY HEARINGS

>

> However, if and when I do know who was ultimately invited, I do not

believe the names should be put out on the internet. We do not want to

advertise our speakers to the other side. Not only does that help them

prepare their arguments, but more importantly it gives Steere/Dattwyler et

al a chance to call the medical,scientific or government institutions that

employ these speakers. Suddenly our speakers become " unavailable " to come

to the hearing.