Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 Tell me more about what a Facebook Group is Glynis. I am wide open for ideas. Luv - Sheila I went to a Media training day today and I found out that The V & A museum has a Facebook group!! I thought what a brilliant idea so what about it Sheila how about launching a Facebook group for TPA? There must be thousands of people out there that would join and what great advertising for free!! No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.23/1113 - Release Date: 06/11/2007 10:04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 Saga has a forum based website called SAGA ZONE - one of the subjects there is HEALTH - I am wondering if it would be an idea to start a new 'thread' about thyroid problems. > > Tell me more about what a Facebook Group is Glynis. I am wide open for ideas. > > Luv - Sheila > > > > I went to a Media training day today and I found out that The V & A > museum has a Facebook group!! I thought what a brilliant idea so what > about it Sheila how about launching a Facebook group for TPA? There > must be thousands of people out there that would join and what great > advertising for free!! > > > > > > > -------------------------------------------------------------------- ---------- > > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.15.23/1113 - Release Date: 06/11/2007 10:04 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 Most definitely - do you want to do this. You could say something simply like hypothyroidism is suffered by 1 in 4 of the population, but probably many of those people don't even know it. It is the consequences of low thyroid or under treated thyroid that is the scary monster and doctors are simply not trained to recognise this. All they do is to give their patients a blood test called Thyroid Stimulating Hormone (TSH) and if this comes back within the reference interval, simply tell their patient there is nothing wrong with them. This is so scary. On the Thyroid Patient Advocacy Website www.tpa-uk.org.uk , it states: " some common and often undiagnosed symptoms and dangerous consequences of low thyroid include: serious mental problems, seizures, heart disease, diabetes including misdiagnosis and complications, constipation resulting in colon cancer, all female problems (due to high amounts of dangerous forms of oestrogen), including: tumours, fibroids, ovarian cysts, PMS, endometriosis, breast cancer, miscarriage, heavy periods and cramps, bladder problems leading to infections, and others...." Should there be any response to this, you could point people in the direction of both to our Forum thyroid treatment where they can get further advice and help. Luv - Sheila > Saga has a forum based website called SAGA ZONE - one of the subjects > there is HEALTH - I am wondering if it would be an idea to start a > new 'thread' about thyroid problems.> > > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 Be very careful on Facebook - I watched a programme where several people had had their identities stolen and the only thing they all had in common was being a member of Facebook. Luv nne I'm on Facebook, Sheila. It's just an online social networking medium...a bit like MySpace but better as you don't get contacted by weirdos. Sue Get a FREE AOL Email account with unlimited storage. Plus, share and store photos and experience exclusively recorded live music Sessions from your favourite artists. Click Here for more information. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 I think that is more something to do with the fact that those people were too trusting and revealed too much personal information such as their birthdate on a public place where anyone could access it - I saw the thing you are talking about, this could happen if anyone gives too much personal info on the internet anywhere. It just so happens that Facebook is the trendy place at the moment I guess. It is possible to hide your personal details on there - or better still - put false ones in Callista x > > Be very careful on Facebook - I watched a programme where several people had had their identities stolen and the only thing they all had in common was being a member of Facebook. > > Luv nne > > > > > I'm on Facebook, Sheila. It's just an online social networking > medium...a bit like MySpace but better as you don't get contacted by > weirdos. > > > Sue > > > > > ________________________________________________________________________ > Get a FREE AOL Email account with unlimited storage. Plus, share and store photos and experience exclusively recorded live music Sessions from your favourite artists. Find out more at http://info.aol.co.uk/joinnow/?ncid=548. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 Hi Sheila, google it and have a look, see what you think, it is really interesting. As someone said there is a danger of identity theft but only if you are daft enough to tell the world your name, address, bank details and all the rest of your personal information! It is brilliant for networking and when it was mentioned at the Media training day I thought it would be good for thyroid sufferers, it is world wide but you can opt for just UK contacts and there are hundreds of thousands of people using it now, yes, 100,000's! Great free advertising and as the V & A said, they write 1 e-mail and it goes to 5,000 people, that's how many have joined their group. Just think of this community in the thousands instead of hundreds, would we still be ignored? I think we would have lots more bargaining power! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 I tried to register with SAGA and they still haven't sent me an activation e-mail. Of course the trouble with SAGA is it is for over 50's and this chronic illness we all suffer from already has a label of being an older persons thing when its not. Women in their 20's and 30's are suffering from it as a result of their thyroid throwing a wobbly when they've become pregnant. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 Actually Glynis they do not need your bank details, they can get them for themselves, not even I would be stupid enough to think that someone is going to put their bank details on there but thousands have put their addresses on as well as other personal details that only your 'friends' are supposed to see and of course all the chat back and forth, the fraudsters get all the information they need. http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2007/07/03/nface103.xml nne google it and have a look, see what you think, it is really interesting. As someone said there is a danger of identity theft but only if you are daft enough to tell the world your name, address, bank details and all the rest of your personal information! Get a FREE AOL Email account with unlimited storage. Plus, share and store photos and experience exclusively recorded live music Sessions from your favourite artists. Click Here for more information. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 That is a great idea Callista, I think it is very wrong that they want you to put in your birthdate day and month you celebrate should be plenty, age has nothing to do with anything, its a number. Luv nne I think that is more something to do with the fact that those people were too trusting and revealed too much personal information such as their birthdate on a public place where Get a FREE AOL Email account with unlimited storage. Plus, share and store photos and experience exclusively recorded live music Sessions from your favourite artists. Click Here for more information. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 Someone has already started a thread on Hypothyroidism on the SAGA message boards. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 Unfortunately for them, yes some daft individuals have put too many of their personal details on Facebook where they can be seen by all and sundry. I have heard of someone discussing which bank they used too!! Silly sods!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 Have you actually got a Facebook account, nne? Because my experience of Facebook is very different to the scenario you're talking about. Most people only let their friends see their profiles. You can have full friends (who can see what you want them to see) or limited friends (who can see less - you decide). They do ask you for your birthday, but you can hide it or only have the day & month visible. Most of my friends know my birthday anyway & the ones that don't are limited friends. If you set your profile up correctly you'll only see a name and a photo (if you have one). I haven't been propositioned by weirdos on Facebook yet, which is a lovely change to MySpace - as I'm an amputee I am often contacted by amputee devotees (the nosey ones are VERY weird!) on MySpace. Basically if you are careful and limit your information you'll be fine on Facebook. Both my kids are on Facebook and quite a few of my friends are people I've actually met. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 Hi, I’ve recently joined facebook – and I was advised by a friend not to put my date of birth public as it can be used when contacting banks etc... If a Thyroid support group is set up I’d certainly join it. Lynne Cartlidge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 I have not said that anyone but friends can see the information - I have just stated the facts that I know which is that there are a few people in the UK and quite a few in the USA who have had their identities stolen and bank accounts emptied. I did not know any of the information that was given, only what was given to me on here and it read as if the birthday was mandatory. No I don't have the time for anything else, I am trying to get myself back into the work force so with housework, baking for hubby (bread, cakes, biscuits plus his dinners) and the little bit I am able to do on TPA - the last thing I have time for is 'another group' although my niece did send me an invitation which she says is open for when I do find the time. Luv nne Have you actually got a Facebook account, nne? Because my experience of Facebook is very different to the scenario you're talking about. Get a FREE AOL Email account with unlimited storage. Plus, share and store photos and experience exclusively recorded live music Sessions from your favourite artists. Click Here for more information. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2007 Report Share Posted November 8, 2007 Can you send a link to that Forum Glynis so we can see what they are discussing? Luv - Sheila Re: Facebook Someone has already started a thread on Hypothyroidism on the SAGA message boards. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.24/1115 - Release Date: 07/11/2007 09:21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2007 Report Share Posted November 8, 2007 I am on Facebook and find it a great way of getting back in touch with old friends, I think if we treated it carefully as you should with all internet based stuff then it could only be a good thing for Thyroid sufferers love Emma > > Unfortunately for them, yes some daft individuals have put too many of > their personal details on Facebook where they can be seen by all and > sundry. I have heard of someone discussing which bank they used too!! > Silly sods!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2010 Report Share Posted November 7, 2010 > > Hello All, > > I don't know if you noticed but Kim has started a group on Facebook. Search for Cholesteatoma - The Hidden Disease and join! > > Michele, Group Moderator > Hey Michele Thanx for posting this. I put the link on the Home page of this group & was also trying to figure out how to include a logo from the facebook page but it doesn't seem to be working or post the promote button here to the facebook page! Glad to see you join Michele ) Here is the link for the facebook page http://www.facebook.com/group.php?gid=2345001285 & ref=ts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2010 Report Share Posted November 7, 2010 Seems I get more response from the group than on the Facebook group. I have made quite a few online friends who are also battling with this disease and we motivate and talk with one another. It would be nice to have more of a response online from the group members on Facebook like we have here on . Re: Facebook > > Hello All, > > I don't know if you noticed but Kim has started a group on Facebook. Search for Cholesteatoma - The Hidden Disease and join! > > Michele, Group Moderator > Hey Michele Thanx for posting this. I put the link on the Home page of this group & was also trying to figure out how to include a logo from the facebook page but it doesn't seem to be working or post the promote button here to the facebook page! Glad to see you join Michele ) Here is the link for the facebook page http://www.facebook.com/group.php?gid=2345001285 & ref=ts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2010 Report Share Posted November 7, 2010 Yes this group is a lot more active right now. Just started the facebook group maybe a year or so ago & these things take time. I remember when this group first started out, it was me & Michele for the longest time lol. I'm new to the whole facebook group page thing so I'm trying to figure out ways to promote activity in the group. Hope all is well ) Kim > > Seems I get more response from the group than on the Facebook group. I have made quite a few online friends who are also battling with this disease and we motivate and talk with one another. It would be nice to have more of a response online from the group members on Facebook like we have here on . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2010 Report Share Posted November 7, 2010 Oh too funny!! Well I love this group and the facebook group too. Thank you for bringing us all together. It helps to have support and hear other stories especially successful ones. Re: Facebook Yes this group is a lot more active right now. Just started the facebook group maybe a year or so ago & these things take time. I remember when this group first started out, it was me & Michele for the longest time lol. I'm new to the whole facebook group page thing so I'm trying to figure out ways to promote activity in the group. Hope all is well ) Kim > > Seems I get more response from the group than on the Facebook group. I have made quite a few online friends who are also battling with this disease and we motivate and talk with one another. It would be nice to have more of a response online from the group members on Facebook like we have here on . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2011 Report Share Posted April 1, 2011 I have just expanded this site to Facebook under the name Total Joint Replacement. While I have less control in the Facebook format, some of you may chose to interact in this manner. Thank you all for continuing to support one another with good advice and caring! This will remain the primary MODERATED group. Alisa Curry PT, DPT Site Moderator Quote Link to comment Share on other sites More sharing options...
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