Re: On line forum censorship

[Guest guest]

OMG - I have been blocked from their Twitter acount!

>

> If anyone else finds themselves in the same position try commenting on their

facebook page and twitter too...

>

[Guest guest]

Yes, once again, they removed my latest questions. I just listed

the list of questions we have on the Home Page of our web site www.tpa-uk.org.uk pointing out that these

questions had been asked of the RCP and BTA for the past few years, but had

been ignored. The questions were:

1.

WHY do the GMC, the RCP, the

BTA et al. deliberately choose to ignore the scientific evidence that has

been available for over 40 years ?

2.

WHY does the British Thyroid

Association refuse to reduce its top TSH limit - due to iodine deficiency in the UK, to bring us in line with

Germany?

3.

WHY are medical associations

ignoring the 13% failure rate of T4-only therapy for the past 50 years? Why

are patient's complaints dismissed?

4.

WHY has there been no

correction to the RCP statement when there are patients who are counterexamples to the validity of T4-only

therapy?

5.

WHY is the confusion of two

definitions for ‘hypothyroidism allowed to continue?

6.

WHY are guideline authorship

and concise

guidance to good practice protocols ignored?

7.

WHY are individual symptoms

of hypothyroidism stated to be “non-specific” when Baisier found groups of these

symptoms may be quite specific?

8.

WHAT further investigations for non-thyroidal causes are

recommended as relevant to the symptoms of hypothyroidism when pituitary and

thyroid GLAND function tests are biochemically normal – Levels of fT3,

rT3 and adrenal levels?

9.

WHY are the studies by Das

(2007) and (2008), which found that patients could be successfully

treated with thyroid extract being ignored?

10. WHY is

medicine ignoring false

negative test results?

11. WHY do

doctors refuse to explain and/or justify their decisions, thereby withholding information necessary for valid consent to

treatment?

12. WHY does the

NHS refuse to take steps to protect human rights when sufferers are put at risk

through a disregard of the demand that patients should be treated with

fairness, respect, equality, dignity and autonomy?

13. WHY are laboratory

discrepancies in serum testing being ignored?

From: thyroid treatment

[mailto:thyroid treatment ] On Behalf Of Derren

Sent: 31 January 2012 12:10

thyroid treatment

Subject: On line forum censorship

I am outraged by this forum removing my posts

with no explanation. I am not an agitator just someone with an ongoing thyroid

problem who wants some answers.

If anyone else finds themselves in the same position try commenting on their

facebook page and twitter too...

No

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Version: 2012.0.1901 / Virus Database: 2109/4777 - Release Date: 01/30/12

[Guest guest]

They

also removed my response to Dr Beastall's pompous statement " Urine tests of thyroid hormone status

are scientifically invalid and they produce misleading clinical information.

They should not be used. There is not a health service in the developed world

that advocates urine testing of thyroid hormones and there is not an

internationally accepted scientific pu... " .I

posted this statement to Dr Thierry Hertoghe in Belgium asking for his

comments, which he sent to me with links to references to show Beastall how wrong

he was, which I posted. I see that both his original message and my response

have both been deleted, so as far as I am concerned, this is a GREAT VICTORY.

He has had to back down, but an apology would have been appreciated for him

giving out such wrong information. He was so arrogant. Thinks we have no brain

cells.

Kathleen,

did you manage to capture the above particular question and my response before they

were removed.

There

were yesterday, 5 pages of questions and answers. Today, there are 3 - so 2

whole pages of these have been removed. I think we have actually won.

Luv

- Sheila

I am outraged by this forum removing my posts

with no explanation. I am not an agitator just someone with an ongoing thyroid

problem who wants some answers.

If anyone else finds themselves in the same position try commenting on their

facebook page and twitter too...

No

virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.1901 / Virus Database: 2109/4777 - Release Date: 01/30/12

[Guest guest]

I am absolutely outraged! I can't access private messages, they blocked me from

the twitter account and keep removing my posts - I keep re posting! They haven't

taken me off Facebook yet though! Come on people - get twittering - are there

enough people to get it trending? we could get a lot of attention to this

issue...

Debs

>

> They also removed my response to Dr Beastall's pompous statement

> If anyone else finds themselves in the same position try commenting on their

> facebook page and twitter too...

>

>

>

> _____

>

> No virus found in this message.

> Checked by AVG - www.avg.com

> Version: 2012.0.1901 / Virus Database: 2109/4777 - Release Date: 01/30/12

>

[Guest guest]

We have got the better of them and they have failed miserably. I

just tried to check in and my account has been disabled. They wanted questions,

I asked, they couldn't answer so thrown me out.

I have now less respect for the British Thyroid Association and

the British Thyroid Foundation than I have ever had before. They are causing

real harm to patients suffering with symptoms of hypothyroidism and don't give

a damn! "

Has anybody managed to capture all the questions and responses

please?

, if you posted a message to Shazza on that forum, I might

be wrong, but I think that too has been removed.

Well, onwards and upwards and there most definitely is a great

need for the TPA web site and forum.

Luv - Sheila

From: thyroid treatment

[mailto:thyroid treatment ] On Behalf Of Derren

Sent: 31 January 2012 12:10

thyroid treatment

Subject: On line forum censorship

I am outraged by this forum removing my posts

with no explanation. I am not an agitator just someone with an ongoing thyroid

problem who wants some answers.

If anyone else finds themselves in the same position try commenting on their

facebook page and twitter too...

No

virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.1901 / Virus Database: 2109/4777 - Release Date: 01/30/12

[Guest guest]

Give us the Twitter URL Debs.

I am absolutely outraged! I can't access private

messages, they blocked me from the twitter account and keep removing my posts -

I keep re posting! They haven't taken me off Facebook yet though! Come on

people - get twittering - are there enough people to get it trending? we could

get a lot of attention to this issue...

Debs

>

> They also removed my response to Dr Beastall's pompous statement

> If anyone else finds themselves in the same position try commenting on

their

> facebook page and twitter too...

>

>

>

> _____

>

> No virus found in this message.

> Checked by AVG - www.avg.com

> Version: 2012.0.1901 / Virus Database: 2109/4777 - Release Date: 01/30/12

>

No

virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.1901 / Virus Database: 2109/4777 - Release Date: 01/30/12

[Guest guest]

HI SHEILA

I have not been able to locate the question but I had to quickly copy and paste,

and one file consists of 163 pages and another on Hypothyroidism has 109 pages.

Some of the questions appear to be in two sections. I will go through and copy

and paste them into smaller files so that each question is on a seperate file.

If they were there yesterday afternoon I would think they must be here. I will

go back there and note where they would be located on my file.

I have posted a question about the fact that their timing is out unless it is

comming from another country with a time difference.

Kathleen

>

> They also removed my response to Dr Beastall's pompous statement " Urine

[Guest guest]

Their twitter is https://twitter.com/#!/TalkHealth - I seem to have been banned.

However I run a music website and have a twitter account which I'm happy for

people to post on (honestly, I am so incensed)

https://twitter.com/#!/safeconcerts. I have now been removed from their Facebook

- bugger - still other people can post on their wall!

http://www.facebook.com/pages/Talkhealth/260622791800?ref=search & sid=1563281623.\

652080936..1

>

> Give us the Twitter URL Debs.

>

>

>

[Guest guest]

Can somebody copy for me what Beastall had to say about TSH with

remarks about if TSH is within the reference range, we do not suffer with hypothyroidism

please, and any other messages he posted, in full.

This man is as bad as Weetman (ex President of the BTA) who

published in two medical journals that if a patient has been diagnosed as

hypothyroid, is taking levothyroxine, has thyroid function test results within

the reference range, yet still complains of symptoms, that s/he is suffering

from a functional somatoform disorder - meaning, it's all in their head.

Luv - Sheila

Their twitter is https://twitter.com/#!/TalkHealth

- I seem to have been banned. However I run a music website and have a twitter

account which I'm happy for people to post on (honestly, I am so incensed) https://twitter.com/#!/safeconcerts. I have now

been removed from their Facebook - bugger - still other people can post on

their wall! http://www.facebook.com/pages/Talkhealth/260622791800?ref=search & sid=1563281623.652080936..1

>

> Give us the Twitter URL Debs.

>

>

>

No

virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.1901 / Virus Database: 2109/4777 - Release Date: 01/30/12

[Guest guest]

Hi Sheila,

Lets give them a taste of their own medicine...excuse the pun!

How about we inundate the lovely rude arrogant Dr's (however many there are) OWN websites/contact media. They are advertising themselves on the net, they have emails and phone numbers. Maybe we should fill their in boxes and answerphones with all the questions they didn't answer or deleted so that their secretaries can't cope? They can't cut us off as they will lose the contact for their patients....How about we ask all the questions there? If they refuse to answer the questions there then we can simply keep on repeating them, blocking their mail and phone for as long as it takes, this will also result in more ammunition for when we get the case going because we will have proof on everyone's email/phone account of how we tried to get answers!! What does everyone think? If it does nothing, it will be highly irritating...Oh dear!

RE: On line forum censorship

..

[Guest guest]

They are removing people's posts because they will be archived and should there be a lawsuit they would be in BIG trouble (my thoughts only).Quote:Online forum on thyroid disordersBTF has been invited to take part in an NHS Choices/Talk Health online clinic about thyroid disorders from 25-31 January, in partnership with Sense about Science. A team of clinical experts will answer general questions about thyroid disorders from members of the public during that week, after which the information will be archived on the NHS Choices website. For more information see hereLoveJacquie> >> > They also removed my response to Dr Beastall's pompous statement > > If anyone else finds themselves in the same position try commenting on their> > facebook page and twitter too...> > >

[Guest guest]

HI SHEILA

I have got a large ammount of questions and answers. I have located the question

about urine tests and there is only a question by Jane123, but it states that

there were 7 posts, but only one post was there so they removed them by the time

I captured.

I was capturing some more, and a message came up that asks me to log in, but all

I could do was to log out. I will try again to see if I have been blocked like

you.

Kathleen

>

>

> Has anybody managed to capture all the questions and responses please?

>

>

>

> Luv - Sheila

>

[Guest guest]

Jen - can you send me your husband's email address. I sent you

an email last night but fear it might have gone into your Junk Mail again so I

will send an Invitation to his email address. Send it to [sheila@...]

Not sure what you are suggesting would be a good thing, whatever

we think about these so called 'thyroid experts' we must not interfere with

their email accounts or answer phones, as this could put lives in danger if

their patients are needing to speak with them. It would be the same if somebody

tried to do this to our TPA account, and those who were desperately seeking

help and support would not be able to get it.

I believe that whatever you give out, good or bad, one day, you

will be paid back in like. The BTA 'experts' cannot carry on they way they are and

causing so much harm to sufferers, without one day being made to answer -

probably in a court of law.

Luv - Sheila

Maybe

we should fill their in boxes and answerphones with all the questions they

didn't answer or deleted so that their secretaries can't cope? They can't cut

us off as they will lose the contact for their patients....How about we ask all

the questions there? If they refuse to answer the questions there then we can

simply keep on repeating them, blocking their mail and phone for as long as it

takes, this will also result in more ammunition for when we get the case going

because we will have proof on everyone's email/phone account of how we tried to

get answers!! What does everyone think? If it does nothing, it will be highly

irritating...Oh dear!

[Guest guest]

They've closed down the forum again!

[Guest guest]

You are absolutely right Sheila - what we need to do is to stick together and

present ourselves very professionally. I seem to have been banned from the site

as I can no longer view posts or respond - I don't think I have done anything

dreadful - I just wanted some answers to a lifelong problem. This whole thing

has really upset me.

Is there not a case under the Human Rights act for better treatment?

Debs

without one day being made to answer -

> probably in a court of law.

>

> Luv - Sheila

> !

>

[Guest guest]

I have suffered a lifetime of thyroid problems and very poor medical treatment,

I have to say that nothing has wound me up as much as this on line clinic

debarcle. How dare they treat peole like this on a public forum!

>

> They are removing people's posts because they will be archived and

> should there be a lawsuit they would be in BIG trouble (my thoughts

> only).

[Guest guest]

Debs, I too have been banned. I did not even tweet once!! I am gobsmacked!

Have added you as a friend although I don't tweet much as I am already

overwhelmed and being ill takes it's toll..

Love

Jacquie

>

> Their twitter is https://twitter.com/#!/TalkHealth - I seem to have been

banned. However I run a music website and have a twitter account which I'm happy

for people to post on (honestly, I am so incensed)

https://twitter.com/#!/safeconcerts. I have now been removed from their Facebook

- bugger - still other people can post on their wall!

http://www.facebook.com/pages/Talkhealth/260622791800?ref=search & sid=1563281623.\

652080936..1

>

[Guest guest]

Booger! I would have liked to have read that answer.

Jane aka Jane 123

>

> HI SHEILA

> I have got a large ammount of questions and answers. I have located the

question about urine tests and there is only a question by Jane123, but it

states that there were 7 posts, but only one post was there so they removed them

by the time I captured.

[Guest guest]

I didn't do anything awful but spent a whole day trying to write down my life

story - which I now feel has been treated with contempt as have I.

I am so upset as I too am very unwell at the moment - but sheer fury has spurred

me on today! They haven't even had the courtesy to tell me I'm banned either -

jusr seem to be denied access - we need to get their behaviour out there for

others to see. I'm tweeting like crazy but can't do it alone!

I will have to do something about my twitter my music followers will wonder what

the hell is going on! lol

Debs

x

>

> Debs, I too have been banned. I did not even tweet once!! I am gobsmacked!

Have added you as a friend although I don't tweet much as I am already

overwhelmed and being ill takes it's toll..

[Guest guest]

I looked up their FaceBook page & wrote on it:

Noreen  It says the online clinic is closed! Will it reopen before end of day, seeing as it's the last day of the clinic??

6 minutes ago · Like

 This forum has been more closed than open, and even then most questions remained unanswered. What a wasted opportunity, shut again :-(

2 minutes ago · Like

Talkhealth Really sorry but it's now closed. However, the good news is that once the experts have answered the remaining topics, we will archive the forum for all to benefit from.

2 minutes ago · Like

So it appears it's not reopening!!!Noreen

On 31 January 2012 16:03, Derren <debs@...> wrote:

 

I have suffered a lifetime of thyroid problems and very poor medical treatment, I have to say that nothing has wound me up as much as this on line clinic debarcle. How dare they treat peole like this on a public forum!

>

> They are removing people's posts because they will be archived and

> should there be a lawsuit they would be in BIG trouble (my thoughts

> only).

-- Democracy is a device that ensures we shall be governed no better than we deserve. Bernard Shaw

[Guest guest]

I didn't realise that Talk Health had anything to do with Sense About Science

that explains a lot. Sense About Science are some kind of Government lobby group

who are pro GM amongst other things. There's a lot about them on the One Click

Group.

I haven't posted links as if you search for articles mentioning them a whole

load of word pad documents come up.

Louise.

<jfalkowski@...> wrote:

>

> They are removing people's posts because they will be archived and

> should there be a lawsuit they would be in BIG trouble (my thoughts

> only).

> Quote:

>

> Online forum on thyroid disorders

>

> BTF has been invited to take part in an NHS Choices/Talk Health online

> clinic about thyroid disorders from 25-31 January, in partnership with

> Sense about Science. A team of clinical experts will answer general

> questions about thyroid disorders from members of the public during that

> week, after which the information will be archived on the NHS Choices

[Guest guest]

Can anyone work out who we should complain to, if we want to complain about the

whole fiasco of the Online Forum?

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints\

..aspx

[Guest guest]

Debs, I have found a way to view their Twitter account. If you go to their

account, on the right there is an icon where YOU can block them and it gives you

access to their account. One still can't see their tweets on #talkhealth but

you have access to account and tweets.

Love

jacquie

> I will have to do something about my twitter my music followers will wonder

what the hell is going on! lol

> Debs

> x

>

>

> >

> > Debs, I too have been banned. I did not even tweet once!! I am gobsmacked!

Have added you as a friend although I don't tweet much as I am already

overwhelmed and being ill takes it's toll..

>

[Guest guest]

Hope the message I have just posted helps explain some of the

problems encountered and what actions are now being taken.

Luv - Sheila

Can anyone work out who we should complain to,

if we want to complain about the whole fiasco of the Online Forum?

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx

No

virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.1901 / Virus Database: 2109/4778 - Release Date: 01/31/12

[Guest guest]

yup - I have blocked them for sure!

xx

>

> Debs, I have found a way to view their Twitter account.