Still Nothing Happening

[bon-bon]

The odd post, but seems people are not returning. Miss everybody and all the help you have given me.

[ValF]

Sorry, you must feel you are missing out. But FB is so much easier to use and if you are careful with your privacy settings it really isn't a problem.

[Hidden in reply to ValF]

For me it isn't just about privacy on FB, it's the general feel of the platform, I literally cannot bear being on there, it makes my skin crawl (I'm sure you're thinking over reaction, but this is how I actually feel).

It's unfortunate that there isn't a viable alternative to FB - I personally find the user interface on FB wanting and certainly not user friendly.

On the subject of privacy and FB you should check this out: forbes.com/sites/thomasbrew...

Companies like FB need to make money. They can't make it directly from users without disrupting their model, so instead they need to use our data - personal data is highly valuable.

Not that any online venue is free from these issues of course.

I admit to being biased in this area. I work in online identity, it is my area of expertise - I am a bit focused on it and have strong views.

I really hope we can make this forum work. We all need to support each other, irregardless of our personal preferences for online platforms. I like this one as it's more of a dedicated area and isn't linked to any personal account I have.

[Hidden in reply to Hidden]

I've just read your link to Facebook privacy and it doesn't bother or scare me at all, who cares if the know my name , email or location , anyone can get that out of the phone book.

[Hidden in reply to Hidden]

That's fine for you Helen, but not everyone feels like that.

As someone who has had identity theft attempts happen, and who has had someone try to take a £10,000 loan out in their name, I can tell you that protecting my personal information is pretty important to me.

I also find it interesting that people get very upset when you dare to say anything negative about FB - good on them for building such a devoted following.

[Hidden in reply to Hidden]

Stay in the minority then but don't moan about the the majority not visiting here, it speaks for itself!

[Hidden in reply to Hidden]

Helen,

why are you being so aggressive, just because we were pointing out we didn't like a particular online forum? You shouldn't take things like that so personally.

It is this kind of aggressive, angry attitude that actually put me off using facebook in the first place.

And actually I wasn't moaning about people not coming here - when you make accusations, make them accurate. I was moaning about Facebook as a forum and I am within my rights to have an opinion.

Also, wth are you even here anyway if FB is so bloody fantastic.

[bon-bon in reply to Hidden]

Thanks Suzedablooze, I thought it, you said it!

[Hidden in reply to Hidden]

You and Bon Bon said it was wrong of Joanne to push Facebook on here and then went into detail about how you both hate it. I don't believe she was wrong in doing that at all. I do not consider myself to be aggressive or am taking things personally.

I do not follow Facebook , I use it to my advantage and do not consider to be a devoted follower as you say neither do I think it to be "so bloody fantastic" as you say.

Oh and by the way I'm here because I've had PM for 17 years and

Have been on the Myositis forums since they began!

I think your response makes you the one with aggression and attitude

[Hidden in reply to Hidden]

That's it for me, I've had enough - i'm out of here. You can't even have a bloody opinion without someone getting all upset.

Jo - sorry, but I need to go for my health, I really cannot handle this sort of thing. I tried

[bon-bon in reply to Hidden]

Susan, I cannot find any posts where I said I thought it was wrong of Joanne to push Facebook and that I hated it. Could you clarify.

[bon-bon in reply to bon-bon]

Sorry, I meant to say Helen. I have confused names.

[bon-bon in reply to bon-bon]

Message meant for Helen.

[Hidden in reply to bon-bon]

I got names confused too Bon Bon , it wasn't you I was referring too , I think its these coloured circles round the names .

It was onother personwho's still active on here so won't mention them.

The post is still there .

Think this post has run too long now.

Sorry for your part in the confusion.

[bon-bon in reply to ValF]

Thanks Val. I don't really know how Facebook works. But, it just seems so gossipy to me and kind of like show and tell in Kindergarten. I think you need to know what you are doing and be computer savvy. Not sure if I fit the bill. This site is difficult to use. The one in the U.S. is as well. I think that is what has contributed to so many people leaving. The same thing has happened on the U.S. site. I find a lot of material and articles on this site has nothing to do with Myositis. Not even sure why they are there. I don't find them helpful, Maybe, some people do. Anyway, I am glad you posted. It is good to see a familiar name. Do you happen to know Joy? We met-up when she was visiting in Canada. Have lost touch since then. Best, Bonnie

[ValF in reply to bon-bon]

Do you mean Joy Walker?

[Hidden in reply to ValF]

Is that you Val from MFSN?

[Hidden in reply to Hidden]

Hello Val , nice to see you here 😻

[bon-bon in reply to ValF]

Yes, Joy Walker. Haven't seen any postings from her for awhile.

[ValF in reply to bon-bon]

If you would like to email me I can pass it on to Joy for you. [e-mail]

[Hidden in reply to bon-bon]

I don't find the face book sites of closed groups gossipy, certainly not the Myositis fb , it's all about the disease we share and how we can relate to each other and share our experience and advice.

It's very active unlike this one.

[bon-bon in reply to Hidden]

Helen, I have never been on face book. I wasn't referring to the Myositis groups. I am sure they are helpful. Hear my daughters talking about what their friends friends are posting, and it makes me think I wouldn't want to be a part of it nor would I want them to read any of my posts. If privacy works, then I am sure I would feel differently.

[Hidden in reply to bon-bon]

Hi Bonnie, the good thing about Facebook is that you build your own community. Your account would be unique to you, populated by people and groups of your own choosing. No doubt you would feel uncomfortable surrounded by your daughters' friends but since you wouldn't choose them to populate your network that would not be the environment you would find yourself in. For example, you might join Facebook and add me as your only friend. I could show you the way to various Myositis groups, but our intreactions would be fairly limited. So you might choose to add a friend of yours who makes wonderful cakes so that you can share recipes, and your niece living in another country might invite you to be her friend so that you can see photos of her toddlers, whom you only see very rarely. You might like the idea of seeing her photos and chatting to her, so you accept her invitation. Your cake-making friend shares knitting patterns uploaded to Facebook by someone you realise you knew at school - so you contact that person and have a good old catch-up. These are just silly examples to illustrate that Facebook is exactly what you make it, not something that imposes unwanted pressures on us. We give Facebook as much or as little information about ourselves as we want, we can use pseudonyms if we choose, no identity checks are carried out. All Facebook data is held on remote servers, nothing is held on your own computer or mobile device. In the unlikely event that someone manages to hack into the Facebook servers, they still have no way of getting from there into your computer, so the only information these hackers could obtain about you would be your Facebook name and your email address - along with many millions of others. They cannot get your bank details, passwords, mother's maiden name or anything else unless you voluntarily share that information with Facebook - and nobody would! I'm not advocating Facebook as a lifestyle choice, but it is an incredibly useful resource to use alongside the other resources available to us. I have 'met' some really lovely people via Facebook Myositis groups, and they have become much-loved friends. All I can say is that it is really not something to be suspicious of, it is a good place. Best wishes to all.

[bon-bon in reply to Hidden]

Thanks Steph. You make it sound easy. So, you are saying no one has to know you have opened an account? I would feel bad telling someone they can't be my friend when I like them, but don't want to share my feelings about this disease with them. Someone just said to me a couple weeks ago that I was so much better than when they saw me last year. What do you say? I am not better at all, I am worse. They are just being nice, I know. Sorry, I just get so frustrated with this disease. How do you reply when people ask you if you are getting better or tell you that you seem so much better. Or is that another topic.

[Hidden in reply to bon-bon]

No one needs to know you're on Facebook at all, but most of us have our 'real life' friends and family as Facebook friends. We generally talk about our Myositis problems amongst other Myositis patients in the various Groups, which are usually private and all content is hidden from non-members. Membership of these groups is very carefully controlled by active members known as Admin - genuine Myositis patients are welcomed, infiltrators are not allowed. That makes it more private than these forums, which are open to all.

In response to people who tell me I look well/better, I just smile and say 'Thank you, I do my best. How are you?' Most people aren't very interested in hearing how I'm doing, but they will spend a long time telling me about their dreadful cold or bad back. I sympathise of course, but I wish they could live my life for a day!

[bon-bon in reply to Hidden]

Thanks Steph. As always, you have a good answer. You have had a lot to deal with after going through the BYM 338 trial. It has to have been really difficult. I am visiting in Florida and attended a kit meeting (my first as we don't have any home). I was talking to a lady from Florida that was in the trial. She said it helped her so much. She also said she has managed to hold on to the gains she made. A doctor there said it really hasn't been decided what is the future of that drug as no results have been published. Let us keep hoping.

[Hidden in reply to bon-bon]

FB isn't scary, it's exactly what you make it, keep your settings private and choose who you want to add as friends, join closed groups so only people within that group can see your posts.I keep in touch with my family in Australia and America.

You can unfollow, unfriend or turn off notifications but most of all if you don't like it or it doesnt work for you , just close your FB account

[bon-bon]

Thanks suzedablooze. Read the article on privacy. Scary! Like you, I hope this forum works. When I first posted here several years ago, it was a very helpful site for me. I was new to IBM, and it was good to have someone to talk to. This was the first site I found and I have always returned. Later, I found the U.S. site and posted there as well. It was also very helpful. I now attend the conferences in the U.S. We have started a Myositis site in Canada, but it is in the early stages and not a site where one can post yet.

[Hidden]

I know Ning communities can work. I used to be part of one for people who did crafts and met and still have, long term friends from that community. I'll continue to use this one, over FB. Maybe in time more people will come over 'from the dark side'

[Hidden]

Hi All. It's early days for this site and it's still suffering from just how really bad the last Myositis UK site was. We must stick with it and make sure we answer any posts. It's the best way to build it up. Best wishes. Mary

[bon-bon]

Thanks Mary. Yes, we need to keep posting. Hopefully, participation will pick-up.