I don't use Facebook

I am saddened to see this new site pushing Facebook the Myositus site. Some of us don't use FB because we have many issues with it. I also believe it has taken the life from sites such as this and if you continue to push the myositis FB site this resource for us wil fail too. Does Facebook contribute to any research into Myositis. Please do not let it destroy this site too, it has taken away so many good sites we used to use for help. Mary

[Hidden]

I agree Mary,

I absolutely loath Facebook as a concept (even though I work in the software industry, so it's not because I'm a luddite) . I much prefer this type of platform. At least here you can be pseudonymous.

[Hidden in reply to Hidden]

Thanks Suze. I cannot understand the whole reasoning behind anyone ever using FB. Can you imagine the potential dangers now and the future from using it. Right now I just hate the idea of it ruining yet another resource for us. I am expecting a lot of critism for this post but I just had to post how strongly I am opposed to it. It's impossible to go anywhere or even sit in a restaurant without people constantly checking FB. Whole families sit around restaurant tables not talking to each other but checking FB on mobile devices. Must stop now, I can get very boring about this. I do hope you are staying well. Mary

[Hidden in reply to Hidden]

Well, you are speaking to a fellow FB loather here. All I see when I have used it is vacuous narcissism. Now that comment will inflame many, but that is how I feel. I don't often write personal views online but I feel strongly about this topic.

I can't understand why anyone would want to use such a public domain to air their lives (and it is so public, you might think you're setting the privacy to high, but the reality is that third party sharing makes a mockery of it all - I work in online identity and write on privacy and security).

All I can say is that I'm really glad it wasn't around when I was in my late teens and twenties, because I'm sure I'd have used it without thinking. I'd now be cringing at my younger self's shenanigans hanging around in cyberspace for all to see.

I'm not bad Mary, azathioprine sort of getting there - hope you're keeping well too.

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p.s. there's a growing movement of FB loathers...watch this space...AND it's rumoured that Zuckerberg wants to run for president so it will be taken over by someone, likely a business leader who will do an Apple on it.

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Some hope: similarweb.com/blog/social-...

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Suze. We will see where this goes. I too take Azathioprine. It works very slowly, it was about 6 months before I felt it had really kicked in and did its job. It's been the most wonderful drug for me. I have remained well and stable since 2012 and tapered all steriods December 2013 and have not needed them since. I have Anti Jo so was not expecting to be 5 years now without a flare. I really hope the same for you. Best wishes. Mary

[Hidden in reply to Hidden]

Wow 5 years without a flare, that is really good news and gives me hope. I keep hearing from the docs that it will 'burn itself out'.

I did go into remission for about a year, but it came back. I had some issues last year with recurring illness (stomach related). Never got to the bottom of it, but they thought it was an azathioprine allergy. Looks like it wasn't and I'm back on it and so far, so good. I'm not bad though, I just tire easily and have a few aches. I feel lucky in my life. Keep well, sus

[RajSangha]

first time ever I've actually used facebook for anything, only because of the myositis

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Hi Raj. That's understandable. At diagnosis we feel so ill and almost desperate for news and understanding of this disease. Instead of FB may I suggest TMA Myositis. I have learned so much from the site. The support and education has been amazing, it's an American site which has been wonderful for me. There was nothing in England except FB. We should be doing better than that. Maybe I will see you there too. Best wishes. Mary

[bon-bon]

Well said Mary. I don't use Facebook either. I attended a kit meeting yesterday in the U.S. Some of the people were talking about Facebook and how great it is for IBM. It is a shame we have become so scattered. So many that helped me so much no longer post here.

[Jo-Goode Administrator]

I take on board your comments about facebook, regarding my post sharing social media and website links. However, all but one of the facebook links I posted are pages you follow for charity information purposes only, and was done to share information not take anyone away from this group. I regularly promote this forum on various facebook pages and some have joined this group who I know from facebook. For Myositis UK facebook is a good platform as a small charity share information for free and reach a large number of people around the UK. I would say I'm also now admin for a UK only Myositis facebook group, Myositis Forum UK, facebook.com/groups/2432609... that I started 10 months after several requests for me to start one, which much to my surprise already has over 300 members. It is often used, for incidence a DM post yesterday afternoon had 38 responses, it's a closed group so in some ways more "private" then this forum (if a forum can be private?).

I do agree the reason many web based charity forums declined, including the Myositis Community Forum, is because people moved to facebook, but this horse bolted a long time ago. I think this was partly down to the ease of use facebook offered compared to web based forums; I believe this new web based Myositis UK forum is more user friendly then the previous one, but I have received complaints from a couple of people who don't like it. I have learnt that despite good intentions you can't please everyone, but I will keep trying my best!

Years ago pre facebook the Myositis UK community forum was a well used and a helpful resource for those who were newly diagnosed and it was sad to see such a sharp decline once myositis facebook groups began. I became admin on the Myositis UK Community Forum when we upgraded the website and changed the forum. Although it was used somewhat those with IBM, it had little use from DM/PM & JDM patients and sadly for a long time I found myself the only person giving a newly diagnosed person a response and general information posts I posted got little response. So for quite some time the Myositis UK community forum has been under review, partly because of it's lack of use and whether the charity could justify its annual cost. Heathunlocked was chosen because it is used by a number of charities such as Lupus UK, the NHS and has more features then the Ning Myositis forum; other then my time that I volunteer this forum does not incur a yearly fee and I hope will offer something useful to those who like and dislike facebook!

[Hidden in reply to Jo-Goode]

lots of good work there Jo!

I sympathize with and understand both sides of the discussion about facebook and I'm sure you are right to go with the majority whilst keeping an alternative open for those who choose to avoid facebook. Shame it adds to your workload but thanks for doing it

[bon-bon in reply to Jo-Goode]

Jo,

I don't come on this site very much anymore and just happened to see your post today. Your old site was the first site I found when I was diagnosed with IBM. I learned a lot and got some valuable information. I also made friends and still talk to some of them. Met up with one of the ladies when she came to Canada.

I am so happy you explained why you are involved in Facebook. I have a better understanding now. I'm from the old school and have never had the courage to join. I do post a lot on the US site.

Thanks for all your hard work and dedication and I wish you a Merry Christmas and a healthy New Year.

[fbcburnett in reply to Jo-Goode]

Well done Jo, perhaps it may be possible to cut and paste anonymously some of the more informative posts.

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Thanks for the information Jo. I appreciate all you are doing and trying to help. I hope this site does not also fail and feel so sad that the only help available to me was from the American site TMA Myositis. For that reason I will continue to support this site for as long as it's up and running. Best wishes. Mary

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I echo Mary's sentiments Jo. I started off when I was diagnosed on the Myositis UK site and had problems getting responses so ended up on Facebook. I am over the moon you started this outside of that platform. I'll try and keep popping into this one to keep it alive and I'm sure over time it'll pick up. Facebook is international so it's bound to have a wider reach, but as people get fed up with FB they will at least have an alternative.

Thank you for your efforts Jo, they are appreciated, but I for one am a cantankerous old soak, especially about FB and various other aspects of tech which I wont bore you with now.

Again, thank you!

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I have no problem with Facebook, I post nothing that I would want to hide anyway.

This site is ok but I don't find it as user friendly as FB navigating it etc.

When I was first diagnosed 16 yrs ago, I turned to the internet and to my relief I found Myositis support group it was called back then.

There was no message boards , it was scary because I hadn't heard or met a single person with PM.

Later came the message boards for the three types of Myositis, it was a lifeline for many and it was very actively used, at last a place where we could talk to each other.

As Joanne said people at the Myositis UK conferences were requesting a FB page.

Some years later the FB page began , and members grew fast.

The old NING board was not well used and it was chargeable to the charity hence the new health unlocked.

It was right that Joanne the Trustee and admin posted links to all the charities involvements, as this could help many people find out vital information about Myositis, which back in my day we simply didn't have .

[Hidden]

As a regular FB user, I can only say that the group on there is very friendly, social, informative and welcoming. Nobody expects everyone to enjoy all platforms. We all have different tastes and ways of seeing things. I hope this group will be a success for all of you

Thank you Joanne for trying to keep everyone included.

[Hidden in reply to Hidden]

Thank you Tania. I too am grateful for all Jo is doing and I hope this forum grows and supports. I am glad FB works for you. Mary

[Mb1234]

Hi Mary. Hope you don't mind me messaging you but haven't seen many Irish users on here. I too am in Munster. I was just diagnosed last week and I'm interested to see how you got you diagnosis and how are you feeling now?

[fbcburnett]

Having worked in the world of law enforcement for 33 years I am acutely aware of the dangers of signing up to social media sites and the access to your life that they provide to others often complete strangers. When posting photos to these sites for example, it is not widely appreciated that they contain hidden information, the time/place..etc. when taken.

If given a choice I would always opt for a site such as this.

Regards,

Colin.

[bon-bon in reply to fbcburnett]

Hello Colin, we haven't met. Only that we appreciate what Jo is doing. Merry Christmas from across the pond. Keep well in the New Year.