Re: Re: Liang/Elsie

[Guest guest]

> 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

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