Re: Terry and some suggestions

[Guest guest]

hi, Terry,

I do have to apologize for the volume of the emails because I did not

know the rules of the posting here. I will follow the rules of the

posting in the future.

However, I did find your characterization of self-justtification of

soapbox kind of offensive. I respect you as a senior member here,

however, I do disagree with you on many of your points which I would

like to co-exist instead of being supressed.

This board does serve a mission. However, it is not defined by you or

any of these senior members. The board dinites its purpose by itself.

It is not an election board that you have to put W. Bush in to

the office:)

Whoever's voice here is deserved the right to be heard, including

your and mine. We can have different opinions, but do not take it too

personal, which will not be helpful to the rest of us.

Your question about why I stopped PTU has been addressed in one of my

posts, maybe the volume of emails has let you miss that. You may look

back and look for it. We may all miss some of the points, but it does

not entitle you the right to insult others who might overlooked my

gender which is indirectly addressed.

RAI does cause problems, the studies I posted already addressed it.

15% will have TED, true, but most are transient , while the rest may

need steroid or another RAI (ironically, yes!)to deal with it.

Obesity can be a prolbem if people do not watch for hypo management

and weight management. The rest of the risks may exist while it seems

to be minimal to me.

ATD does cause problems in a very small portions of patients which

other alternatives may be condsidered. RAI provides another way of

management from hypo intead of hyper for graves patient should ATD

did not work or not suitable.

I did find your post about 22 reasons the most amuzing and laughable

post I have even seen, which most are just based on fear instead of

facts. A basic education in radiation will be helpful. no offense

here. We are dealing with radiation all the time. too much fear might

cause unnecessary stress which might not be good for Graves recovery.

We should let peoples' voice to be heard instead of being supressed.

After all, this is the place what we call it the United States.

Best wishes,

Liang

--- In graves_support , Terry ding <aldente@s...

> > I agree with you and would also like to support Liang. I'm not

sure how

> > one person offering links and personal opinion based on

experience has

> > managed to divide a group so. We are all perfectly capable of

deleting

> > posts we do not wish to read or - as I often do - filing them for

later

> > when I may be in a better position to digest the contents

effectively.

>

> Elsie, I think the point here is, that this subject has gone on and

on and

> on...that there are new people needing help, that they might just

come

> across this board and all the argument and be turned off and go

away.

>

> Nobody here wants to censor a group member. As Pam L suggested,

putting all

> the huge series of studies into a concise post for reference,

rather than

> popping in with another one in response to each post, would be more

helpful.

>

> > The only thing perhaps that Liang has been 'guilty' of is not

reading

> > the tone of the board correctly and backing off a bit.

>

> I disagree. Liang has been invited to share HIS experience with us,

in fact

> I personally asked him to do that. I asked him about being taken

off ATD's 3

> times, and going " out of remission " . I find it quite sad that after

all

> these huge series of posts, he's never answered the question: Did

he get

> taken off ATD's because his antibodies were low enough to be

predictive of

> remission, or was it because the doctors deemed it " time " to remove

the

> ATD's ? The fact that he's a scientist who has extensively

researched the

> RAI option, and yet would allow this protocol to be followed prior

to RAI,

> brings up questions that from my point of view have never been

answered.

>

> This is a question he's tried to address simply by providing

studies. Some

> of us have pointed out that the studies are virtually meaningless

because

> they are set up with artificial parameters--for instance, studying

relapse

> rates on people taken off their ATD's after a set period of time.

>

> For me, the thrust of my interactions with Liang was to get his

PERSONAL

> experience, and he kept coming back with another study. As I

personally see

> the board as being a forum for members experiences and questions,

this seems

> inappropriate.

>

> This board can

> > appear to be really anti RAI, and anti Dr's. I see this as a

reflection

> > of the personal experiences of the vocal members of the group,

but do

> > not necessarily take those views on board. I also recognize that

whilst

> > there is a lot of literature out there stating that RAI is safe,

it

> > would appear that the personal testament of some contradicts

that. My

> > choice not to have RAI at this point was partly influenced by the

> > personal stories on this board and others. But as someone recently

> > pointed out those who have no problem may not seek a support

group on

> > the net.

> >

> > The tone of the group at the moment smacks of 'senior' members

maybe

> > thinking their authority is being usurped, that unless you have a

panel

> > of lab results for them to offer opinion on then you are not

welcome.

>

> Wow! As one of those " senior " members, at least by virtue of my

time here, I

> can't disagree more! We welcome everyone. We just want to keep this

forum

> open for the people who need our help, rather than turning it into

one

> person's self-justification soapbox.

>

> > I'm certain that this is not the case, but as a consitutionless

brit I

> > thought that free speech was held in high regard in the states

> >

> > I may not have read the entire articles posted by Liang, but I

have seen

> > repeatedly in her posts that she does not advocate RAI as a first

choice

> > therapy and encourages the keeping of your thyroid.

>

> You haven't even discovered yet that Liang is a man, eh? Forgive me

for

> being blunt, but if you haven't been reading the posts, you can't

possibly

> follow why this has " blown up " , as you say.

>

> Why has this blown

> > up? If you believe that Liang is on this board to cause distress

then

> > ignore her posts so as to not 'encourage'. If you find them a

starting

> > point for discussion then let that thrive.

>

> Once again, I need to stress that this board has a purpose. Someone

coming

> here and getting barraged with post after post that do no more than

justify

> RAI will subvert that purpose. Perhaps (and I think I'll post this

again

> separately) we need to do a bit of group-think writing: we could

use a

> mission statement.

> >

> > I've been on this board for a couple of years and enjoy and

respect the

> > opinions and experiences of those who keep it going, although I

do not

> > post often. I think it is a valuable source of information and

support

> > for people at all stages of graves. But please step back a bit

and see

> > what's happening. There really is no need for this friction.

>

> Friction often leads us to the most productive work we can

accomplish. It

> has brought to light the fact that we DO need to define this group

a bit

> better, which is a good thing!

>

> Terry

> >

> > yours

> > elsie

> > RE: Re: Liang / / Jean

> >

> > I have been a long-term member of several groups and I did not

> > experience

> > Liang's posts as abusive, trolling or disrespectful of others. I

> > experienced

> > Liang as taking a position in opposition to some others on the

list and

> > working hard to maintain that position in the face of it.

> >

> > These are normal group dynamics. Perhaps people who have been on

the

> > list

> > have more authority, more clout, deserve to be heard more than

> > others...I

> > for one benefitted from following the thread. I appreciate your

> > suggestion

> > that we provide URLs. I do not have access to paid journals which

> > require

> > subscription and appreciate Liang's offer to aid with research,

but they

> > can

> > be sent to my private address.

> >

> > I think that many and varied opinions add to education and I

expected

> > that

> > part of the 'support' offered here was education. Most places of

> > learning

> > invite contrasting opinions.

> >

> > Fay's characterization of Liang's position seemed on target to me

and

> > didn't

> > contain any labeling or going to his intent which some of the

rest of

> > you

> > have done. Personally, I find that rather rude.

> >

> > Why don't we just let people contribute as they desire and read

the

> > subject

> > heading. If you don't want to follow the thread, don't. Delete

those

> > posts

> > and read the others. I'm not appreciating the big 'problem' here.

> >

> > Sheila

> >

> >

> >

> >

> >

> >

> >