Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 I would say my story is a very good counterexample, and I am willing to tell anybody about it - and I do lol. Lilian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 You will get your chance to answer the 8 simple questions Lilian and get your name on the Register. However, to get the link out to as many owners of thyroid web sites and Internet thyroid forums, it seems some of us will be forced to burn the midnight oil, because nobody else has come forward to offer us the help we need to complete this massive task. Where are all you members who have written to me in the past saying " If there is anything at all I can do to help, just let me know " ? Luv - Sheila I would say my story is a very good counterexample, and I am willing to tell anybody about it - and I do lol. Lilian No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.432 / Virus Database: 270.14.129/2606 - Release Date: 01/07/10 19:35:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 I am willing to do something - what it is you need help with? Lilian You will get your chance to answer the 8 simple questions Lilian and get your name on the Register. However, to get the link out to as many owners of thyroid web sites and Internet thyroid forums, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Hi Lilian - do you remember when you found the heads and Deans of all the UK Medical Schools - well I need something similar. To get as many names on the Register of Counterexamples (we need thousands which we should get throughout the world) we need to ask all the owners of hypothyroid web sites, thyroid web sites, and Internet Thyroid Forums. It would be good to get the Local Sup[port Groups leaders email addresses as well. This is so we can send them the link (which Lee and Simon are sorting) to a professional online Form setting out 8 relevant questions which just need their members to tick 'Yes' or 'No' to 8 questions. Hopefully, their answers will go straight on to a spread sheet and their name and country will be placed on the Register List. The work involved would mean finding these web sites, opening them and finding the contact information. Sometimes, there is an email address there, sometimes, a contact page opens where you write direct from the web site. In such cases, I would need the URL to that page copying and putting onto the list. It would be best for helpers to concentrate on just one country. So far, we have Trish who has offered to do - Australia and New Zealand and Papua New Guniea Marie who has offered to do – UK web sites and forums (Galathea) who has offered to do what European countries she can find What is a really painful job to do is all the Thyroid Forums, because to get the contact details, you have to actually join the forum. Once you are on a 'roller' it becomes quite easy. You have to wait to be accepted, find the information, and then unsubscribe, which makes it all a bit of a drag. But, if anybody can do that particular chore, this would help enormously. I am also going to write to all the doctors who run clinics that use the 'alternative' therapy to the T4 only therapy. Hopefully, such doctors will have a list of email addresses for their patients. If anybody is willing to find the email addresses of such doctors, please do so. I am thinking of such doctors such as Myhill, Peatfield, Skinner, Teitelbaum, Friedman, Mantzourani and other 'alternative' doctors I already have on my list of 'good' doctors and other doctors of such organisations as the British Society of Ecological Medicine - http://www.ecomed.org.uk/practitioners where their email addresses could be collected and listed. It really is a case of thinking where we could send this link. Another source could be Thyroid UK who have the email addresses of local TUK support groups, or the British Thyroid Foundation, who also list email addresses of the owners of local thyroid support forums. As many helpers as we can get PLEASE, PLEASE, PLEASE - because this is one of the most important things we have done ) I am willing to do something - what it is you need help with? Lilian You will get your chance to answer the 8 simple questions Lilian and get your name on the Register. However, to get the link out to as many owners of thyroid web sites and Internet thyroid forums, No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.432 / Virus Database: 270.14.129/2606 - Release Date: 01/08/10 19:35:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Hi Sheila I'm a member of some Dutch sites I could get you the addresses. Also I have read through some Scandi sites - Swedish and Danish. Do you just want the email address and contact name? I think you will find that doctors are not allowed to give out patient details at all as this will contravene all confidentiality rules that doctors are held too. I read about a doctor being fired from the NHS for doing a similar thing to try and build a database for a healthy living initiative. Perhaps an alternative thing would be to print out some cheap cards with the link to the register that doctors could give out to their patients during consultations. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Hi Sheila, What about bloggers? For example there is a swedish thyroid blogger who's had over 40,000 hits to her site. A lot of the traffic would be for thyroid-related issues so a link on a site like that might get attention from thyroid sufferers. Would you want contact details for thyroid bloggers too? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Oooh! Yes please Lou! All I want is the Email address of the owner of the sites, or if that isn't available, the URL to their contact page. I am aware that doctors would not be allowed to give out their patient's email addresses, what I intend to do once I have the doctors email address is to write to them and ask them to contact their patients direct to give them a link to the questionnaire. I do believe most doctors who use a T3 containing product would be very happy to do this. It wouldn't work for me to print out cheap cards, this is a world-wide exercise. Luv - Sheila Hi Sheila I'm a member of some Dutch sites I could get you the addresses. Also I have read through some Scandi sites - Swedish and Danish. Do you just want the email address and contact name? I think you will find that doctors are not allowed to give out patient details at all as this will contravene all confidentiality rules that doctors are held too. I read about a doctor being fired from the NHS for doing a similar thing to try and build a database for a healthy living initiative. Perhaps an alternative thing would be to print out some cheap cards with the link to the register that doctors could give out to their patients during consultations. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.432 / Virus Database: 270.14.131/2608 - Release Date: 01/08/10 19:35:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Yes please Lou - what a brilliant idea. I want anywhere and anyone who can get information out to sufferers of hypothyroidism, especially those who did lousy on levothyroxine yet got their health back on T3 or T4/T3 combination or through taking thyroid extract. Luv - Sheila Hi Sheila, What about bloggers? For example there is a swedish thyroid blogger who's had over 40,000 hits to her site. A lot of the traffic would be for thyroid-related issues so a link on a site like that might get attention from thyroid sufferers. Would you want contact details for thyroid bloggers too? No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.432 / Virus Database: 270.14.131/2608 - Release Date: 01/08/10 19:35:00 Quote Link to comment Share on other sites More sharing options...
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