Non Facebook users??

I know VUK has a closed group on Facebook and if I wanted to join I could send a request but I'm not on Facebook (and no offense but I can't stand FB) so I don't intend to join but feel that I might be missing some helpful information. As Keyes had mentioned there was a group sharing healthy ideas, recipes and tips, is there anywhere else this information is shared? I'm very motivated (by my desire to reduce my steroids and mtx) to improve my overall health through diet and lifestyle choices as I have already seen great improvements and keen to know what others have/are doing to get results. Is it possible to have a healthy corner (the way there appears to be a creative corner) on this forum? I don't know if there are others who would also benefit?? Thanks.

28 Replies

  • I completely agree with Raspberry Tea. I am not on Facebook either and I don't like it either and don't wish to join but, I do value the information I gain from the website.

  • So far as I can see, it's not a closed group. I only "liked" it. I rarely read it if I'm honest. Maybe, there is a separate closed group, I honestly don't know.

    Does anyone have the online link to this story?

    The ‪#‎Leicester‬ Mercury tells Martin's personal story , being diagnosed with ‪#‎vasculitis‬ ‪#‎WegenersGranulomatosis‬ ‪#‎raredisease‬ John Mills explains about #Vasculitis UK ‪#‎charity‬ giving one to one support,sharing information, supporting ‪#‎research‬ and raising awareness

  • Hi ferntree, there is a closed group on Facebook. Maybe someone could send you the link so you can join, you may as well if you are on there already. Cheers.

  • Thank you rasberry_tea. No, I am not on their closed group. I messaged VUK via facebook. Will let you know xx

  • Re the ad blocker, it works, great.

  • there is a closed VUK support group and is very active, around 1800 members. It is monitored every day by our team of admins. The page you are referring too Ferntree is the VUK Timeline which just gives information about support group meetings, fundraising events. media interest, new medical research studies etc


  • I do understand your dislike of FB - but it all depends how you use it. You don't have to have "friends", you can join in a totally anonymous way and just join the group - do it that way and all you will see is the stuff from the FB group.

    I don't even have ads - I have Adblock plus which has great benefits for all the other stuff I do on the internet! Although the Gaurdian online has noticed and is asking me to subscribe to "support" them!

  • Thanks for the suggestion PMRpro, but I really don't like Facebook, this might work for others who would like to use the group though.

  • Hi PMR pro, sorry to butt in ,but how on earth have you managed to block all those dreadful ads, I find my screen has more ads than what I,m trying to look at .If you are able to pass on the way to do this, and I,m sure there are many of us who would love to know, please can you explain in a way that an internet dim wit like me will understand, Thankyou so much.

  • It's a google chrome add-on - it came with my new computer so not entirely sure of all the details but if you google adblockplus you can look it all up on their site. There are versions for Firefox, Chrome, Android, Internet Explorer (does anyone still use that?) and so on - you download it and it just adds on to your security firewall. You can configure it if there are things you do want to see and I think you can disable it temporarily because it will block some pop-ups on a website that you do want to see.

    If you can't manage and haven't grandchildren of your own - borrow one from someone!

    One of the forums I use pays to avoid the ads - I keep telling everyone to get an ad blocker and it would save the charity money! As an aid to sanity though it is unbeatable!

  • Thanks for your help, no more ads , great

  • Always pleased to oblige!

  • I have a FB account but don't use it. When I log on, all I see are ppl saying innate things like 'I'm going to bed now' or some such other rubbish, so I just log off. I can't even find the inclination to find the 'pages', so I agree wholeheartedly with Raspberry Tea.

  • I find this site much easier than facebook as a measured source of information. I think the vasculitis uk website has info on healthy eating for us vascies if that helps.

  • Hi raspberry tea,

    I set up the Vasculitis Healthy Eaters Facebook group ( dreadful name I know but it was all I could think of at the time! ). You could join Facebook just for the closed VUK groups and not send anyone any friend requests etc, or just log on and look at the groups and nothing else.

    I am a real Luddite when it comes to technology but could talk to Susan about whether we could set up a sub group on this or the VUK website to share recipes, healthy eating tips etc. the healthy eating group is a bit of a work in progress. At the moment we share recipes and healthy eating ideas/ tips and just generally support each other. One of the most commented on things recently was when someone had lost 8lbs and felt the healthy eating ideas and support had really helped them.

    Certainly I would say the VUK Facebook group has a different " feel " to it than this group but it's still a great source of information and support. It's also very well moderated.

    Leave it with me and I will see what I can come up with!

    Best wishes


  • You can share tips on Healthy eating here in the HU group, Just let me have a look and get back to you


  • Thanks Susan! I am happy to " manage " it, I don't want to give out any more work!

  • I have created a post and placed it in "Creative Corner" if you go to the home page, and click on all posts, all the posts will appear, look on the right hand side and scroll down you will see a sub section called Creative Corner, this post will be in this section. You can then share recipes tips diets etc and links.

    The one thing you cannot do is share photos, but I will talk to the HU admin to see if this is at all possible. I can also pin the post to the right hand side of the "Post" home page. So it can be easily found


  • Thank you so much. I appreciate this and I hope I'm not the only one who will find this useful. Cheers!!

  • ??

  • it's should be a link to the recipe post.

  • Oh, ok thanks. I had already seen it and that's why I was confused by the link. Cheers anyway.

  • I hope I haven't created more work with my request, I understand that people have to commit their 'own' time. Thank you for yours.

  • No problems raspberry tea. I am sure that I can get my computer literate 16 yr old to help me copy and paste the recipes onto this site.

    I have a big interest in food, love to cook and have loads of recipe books. If you are looking for particular recipes let me know. ( I have loads of lovely, slightly different salad recipes for example ).

  • Dear raspberry-tea,

    I have a 'sort of' compromise, to this one. I only have very limited profile, on Face Book, enough for those who know me to find me. I do quite agree though, it can be very invasive, if you let it. As regards recipes-quite frankly you can just 'Google' them. There are, excuse the 'French' here, F....g 'thousands' of them. Take your pick!

    I therefore doubt that you will 'miss out' much, if indeed at all, by not embracing FB.

    I love the 'name', you use, is it because you like coffee?

    Best wishes AndrewT

  • Hey AndrewT. You are funny 😸. I think you'll find the French is: 'Il ya des milliers de recettes' (I hope I've got that right otherwise I'll look a right raspberry!!) for me to choose from. But that's not what I was looking for. I have been experimenting with my diet and looking at what helps my recovery and what hinders it. I have eliminated gluten, caffeine, alcohol and trans fats. I take various vitamin supplements and eat as healthily as my circumstances allow. I'm desperate to lose weight as I was at the point where I was developing type 2 diabetes and hideously high blood pressure, I have lost some already which seems to have abated those symptoms. I was hoping to share successful finds with others who are doing the same to avoid more complications or medication.


    P.S. ain't had a coffee for years, but I used to love one with a Marlboro light.

  • I used to be part of the FB Vasculitis group, but found that there was very little relevant to my diagnosis of Rheumatoid Vasculitis. The members were fantastic, but I much prefer it here in the HU community, so I now don't belong to the FB group. I'd love a 'healthy corner' on here. xx

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