COPYRIGHT - TALKHEALTH SITES

[Guest guest]

So,

I faced the fear and telephoned the administrator (Deborah) and have been in

discussion for the past hour. So, whoever the member was who apparently took it

upon themselves to email Admin to 'tip them off 'that TPA was " copying

chunks of messages to use elsewhere " , although this was not the whole

truth, I would like to say a massive THANK YOU. You have, in fact, done TPA a

tremendous favour, without which, I would never have telephoned Deborah and

learned so much. So, every cloud, as they say, has a silver lining.

I

did put my hands up to Deborah that it was me who was asking for copies of

messages and responses, because I thought these were in the public domain and

because they were 'experts' I wanted to study these in my own time. I wanted

copies because I had seen so many being removed. I apologised for this, and I

also admitted that copyright had never entered my head, even though it should

have done.

I

can now assure everybody that the thyroid Talk Health forum has closed to

further messages being posted, but the 'thyroid experts' will be continuing to

answer as many of the remaining messages as they can over the course of the

next few days and then once the whole forum has been closed to both questioners

and experts, the messages and answers will be automatically archived for the

next 12 months and everybody can check through these at any time they wish. After

12 months, these will automatically disappear.

I

asked if she would let me know whether it was Admin. who had been removing some

of the messages and answers, or was it requested by the BTA 'thyroid experts'

as there was no explanation to the readers/writers on that forum, and it was

this that was causing a great deal of anger and frustration. She admitted that

it was Admin. She said this had to be done because of the sheer overwhelming

number of messages posted, and they wanted to keep the questions under control

because the experts were overwhelmed and she was very concerned that they might

" give up " because they couldn't cope, which she said would not have

been fair to those who had a serious question. They also removed messages that

were not asking direct questions about individuals personal problems with their

thyroid health. The questions that were being asked about the BTA policy were

not being allowed. She also said that some of the questioners appeared to be

deliberately 'bating' the BTA experts and they would not allow these.

She

did acknowledge that not all of the experts had contributed in any way which I

feel she was disappointed about, but she is now going to write to each of them

and ask them to do whatever they could to respond to all those questions left

remaining.

She

was upset that when the 'experts' did give answers, there was an influx of

posts that she felt out of control with at times simply because she knows

nothing about thyroid disease and was having difficulty in making any sense of

what was going on. One thing was leading to another and the team decided this

had to stop.

I

did tell her that it was because of the 'experts' answers, many of which were

downright misleading and did not give answers to many of the questions asked,

but, instead used the opportunity to talk about TFT's and T4-only therapy

working for all etc. etc. Our frustration is that the BTA will not back up

their statements with scientific research or studies, however many times they

are asked. I told her of our frustration over years with the RCP/BTA

diagnostics and treatment and that it was felt very strongly their neglect of

the facts is causing real harm to sufferers and that what happened was almost

inevitable.

She

agreed that the sheer volume of questions had shown them that there is a

massive problem that needs to be sorted and that they will be writing to NHS

Choices and the British Thyroid Association with their report. I asked if the

BTF had given their view over the past few days and she told me that no, she

had not heard from them.

We

discussed so many aspects of what went wrong and I hope that I was able to help

her resolve some of the problems they had had and she now has a better

understanding of our side of the story and what caused our frustration, and at

times, sheer anger. She has apparently experienced such frustration with the

authorities over another personal medical problem, so completely understands

where we are coming from - and this was the reason the decided to open their

forum clinic in the first place.

However,

as I said previously, every cloud has a silver lining, and our silver lining is

that I asked if the Talk Health clinic would allow a team of thyroid experts

from TPA to show the 'other side of the picture' at some time in the future and

allow us to 'hire' their space for a week. I explained that our thyroid

experts are those who work outside of the BTA diagnosing and treatment protocol

and who are actually making those being left to suffer symptoms of

hypothyroidism, to regain their optimal health once more. I explained that as

the BTA are not employed by anybody, that they are responsible to nobody (apart

from their members) and were a registered charity, that they are no different

in any way whatsoever to TPA, apart from the TPA's huge disagreement with the

present and lack of a choice of treatment, and that fairness should be

seen to be done. The great news is that we are now in the process of making

arrangements so that this can happen, but they are fully booked now until next

December, so is likely to be about a year. So, although we have had a week of

frustration and quite a rocky ride, if nothing else, something good has come

out of it all. I will keep you all informed on this.

I

did ask at the last minute that if I could get permission of the BTA clinic

experts to copy their responses to the questions, would this be allowed, but

she said that this couldn't happen, because all the messages, whether questions

by patients or responses by experts were all Talk Health Sites copyright.

So

please, no more copying of anything from Talk Health sites, but please be

assured that the questions still needing responses will be dealt with over the

course of the next few days, and then we will all have access to them in their

archives for the next 12 months.

Thanks

to everybody who took part in the clinic, and Deborah has apologised for any

upset that has been caused to individuals by the removal of some of the

messages and responses, but admitted that this was the very first clinic where

they had become so overwhelmed. They recognise that we have an overwhelming

problem that needs to be resolved.

Sheila

Hello Sheila

I am extremely disappointed to have to contact you about

something quite serious relating to copyright law.

One of your members has informed us that you are copying

and saving vast chunks of our online forum on thyroid disorders to use

in some way. May I draw your attention to the following copyright symbol which

is clearly displayed on all our web sites: