[lilibParticipant]

This is just a general observation, and not actually a question. I have only recently been directed to this forum in search of information and support as a carer. A lot of the very helpful replies have directed people to a Facebook group. This is a great shame for those of us who have never had a Facebook account and are not willing (for various good and sound data-protection reasons) to open an account with Facebook.

I would really like to encourage people to use this forum, particularly for myself, but also for any other Facebook Refuseniks out there needing support.

[gcoulterParticipant]

Hi

I would agree with you in terms of the forum being a very good source of information and support from very helpful folk.

I do use Facebook occasionally but get frustrated with it as the same question tends to get asked time and again. Whilst on here I find it easier to find the information, and when I post it’s easier to track the replies and go back again to it later.

I’ve also found it useful to read what people have already posted, which is just too hard to do on FB, it just gets buried and hard to find again, which leads to the multiple questions about the same topic.

So yes like you I wish people would use it more.

Graham
(also a carer)

[debbiesParticipant]

I so agree with what you are saying. After a bad experience with Facebook, I dont use it but often refer to this site

[lilibParticipant]

Thank you, debbies and Graham. That is interesting about Facebook. Having never used it, I didn’t imagine that the ‘traffic’ on a Myeloma site would be so high, so I guess I don’t mind so much about being excluded now. It would be mighty tedious to be reading the same queries over and again, and I think most Carers and patients have got better things to do with their time.

Best wishes to you and yours,

Lili

[vincentmuellerParticipant]

Well it should be up to yourself if you want to use facebook or not. Some like it, some not. The information is usually available other places also.

[lilibParticipant]

Hello Vincent,

Well yes, I agree with what you say about personal choice. However, as someone new to this Forum, I was rather perplexed by the number of replies to newcomers and others which suggested that there would be a lot more information available on a Facebook group. If you like, I was wondering why people were being directed there when a forum specifically for Myeloma issues already existed here.

The reply from Graham seems to reassure me that I am not missing out on anything by not joining Facebook!

[Author]

Posts