The developing picture of on-line support

[HAIRBEAR_UK]

Hi everyone,

Yesterday I travelled to London with a colleague to meet with Andrew Schorr of Patient Power. We had a great meeting. we look forward to working with him on global patient programs in CLL, especially in Europe with the support of advocates in France, Germany, Spain and Italy.

Andrew you’re an inspiration. Andrew also featured in an event the evening before in which with others he describes and explains the impact on him and he to it of on-line information and support. Good and bad and explores with a panel how on-line support is developing for patient groups within social media.

This is a link to the show: new.livestream.com/smwlondo...

Having been inspired by Andrew I have set up a Twitter facility to sign post people here , It will be updated using bit posts of latest CLL news and current information for the interested and links to help social media users find us.

Several have joined us here at HU through links provided in CLL Facebook groups posted by their members My own new twitter page is focused on CLL.SLL and our community twitter.com/SupportCLL

As part of the on-line CLLSA development we are exploring creating CLLSA signposts to allow CLL/SLL patients who are social media users to find us.

[this post has been edited today 28/09/2013] Following the alert about protecting anonymity please note that other twitter users can see who you choose to follow unless you create a private list. Rob explains this below.

Nick :

twitter.com/SupportCLL

[HAIRBEAR_UK Founder Admin]

The link to the video program in which Andrew Scorr explains how being in touch with others saved his life may not start immediately you may have to scroll ahead first?

Andrew's post to ACOR:

Subject: my story of this list saving my life

Greetings from London/Heathrow and on way to European Cancer Conference in Amsterdam (anyone there?),

Last night I was on a webcast from London about social media and health. Here's the link: new.livestream.com/smwlondo...

I told the story of how CLL List founder Grannybarb Lackritz saved my life. See what you think. Best Wishes, Andrew Schorr

[Hidden]

Thank you HAIRBEAR We owe much to Andrew as his videos and interviews are always understandable and relevant. The ex medical director of Bupa also clearly maede the case for social interaction. That's us!

Bub

[Oleboyredw-uk]

A word of caution, if you set up a user on twitter and follow another then others can see what you are following. I would not want that as word could get out and I've been cautious about sharing my info. I have a number of friends on twitter that do not know my situation.

There is a way round this. Follow the person (eg CLLsupport), create a list, put the person in the list, mark the list as private then delete the person. I've not tried this, it is only from reading the web. I'll tackle it this weekend, should only take a few minutes, anybody with a twitter user want to check it out with me? I just need you to follow me and see if you can see I'm following the SupportCLL feed.

Rob