tag:blogger.com,1999:blog-4941854812083391099.post7287875554016016817..comments2024-03-07T14:33:24.659+00:00Comments on Just ME: "The Use of Patient Blogs as a Care Resource"Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-4941854812083391099.post-54461260562735966762015-09-22T08:58:01.114+01:002015-09-22T08:58:01.114+01:00Thank you Fiona - the video has been shared fairly...Thank you Fiona - the video has been shared fairly widely to date, but I'm always happy for it to go further, and if anyone can get it in front of key decision makers then I'm happy for that to happen! :P <br /><br />Best wishes with your London doctor, I too have had to supplement NHS care with private consultations. Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-8322360314520885582015-09-22T07:26:15.756+01:002015-09-22T07:26:15.756+01:00Your presentation was excellent! I so do hope and ...Your presentation was excellent! I so do hope and pray that the right ears hear your message!<br />I've been ill for almost 6 years now, but was only diagnosed with fibro 3 years ago. I think I have spent most of that time being a victim to this illness. I've been trying to get help from the NHS but because I've been diagnosed with fibro as opposed to ME I'm not allowed to access the chronic fatigue clinic despite the fatigue being my main life altering symptom!<br />Due to this, I am now travelling to London to have a consultation with a private doctor whom I hope will help provide me with more tools and advice about this condition.<br />It is so sad that especially as an ex nurse, I and so many others have to seek help and support outside of the NHS because their recommendations for treatment simply do more harm than good.<br />Sally, I would encourage you to send this to the Health Minister of the UK as well as heads of NHS and NICE. <br />You are a true champion for the cause for our voices to be heard! Thank you💐 xxxxFionahttps://www.blogger.com/profile/01889068158799443744noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-71825157904858836352015-09-14T08:23:10.637+01:002015-09-14T08:23:10.637+01:00she might be a good surgeon but she knows stuff al...she might be a good surgeon but she knows stuff all about me/cfs/fms don't you exercise her advice is just plain stupidAnonymoushttps://www.blogger.com/profile/03040348495087015414noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-34528646886813035572015-09-13T14:15:05.658+01:002015-09-13T14:15:05.658+01:00Fantastic work Sally. This presentation is clear a...Fantastic work Sally. This presentation is clear and easy to follow. Thank you for all your hard work despite your own health difficulties xxxFrench femmehttps://www.blogger.com/profile/16814891305960111979noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-6740337216764547652015-09-13T06:48:04.972+01:002015-09-13T06:48:04.972+01:00Thank you Alison for you lovely comments about thi...Thank you Alison for you lovely comments about this presentation - and YES I think there are many who encounter exactly the problem you describe. You are welcome to share the video widely, and if you can show it to any medical professionals then so much the better! ;) <br /><br />Hoping for better times for all of us soonest. xx Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-13832599620891226422015-09-13T06:17:41.071+01:002015-09-13T06:17:41.071+01:00Thank you so much for sharing this with us. You ha...Thank you so much for sharing this with us. You have given me so much helpful, valuable information. I can't wait to share this with my me/fibro friends. I am a fibro/cfs sufferer and have had cervical and lumbar spine surgery amongst other things. My sciatic pain is still quite bad and the advice recently from my spine surgeon, who is actually generally quite a fantastic surgeon and professional lady, was to swim for 30 minutes a day as this would resolve my problem. She is aware of my fibro and cfs but has no understanding of how it affects my daily life....even taking a shower can leave me exhausted and needing not only to rest but also to be helped to take the shower and help with washing, drying and dressing! So i'm sure you can imagine how I felt at her request to swim for 30 minutes every day. For a regular person who doesn't suffer from fibro/cfs I am quite sure her advice was sound and very helpful but there is no way I can do what she is asking. If I managed to do it once IT would send me into a horrendous flare which would leave me in unimaginable pain and fatigue for days. Proving exactly what your article has just explained. Exercise in my situation would do more harm than good. I want to thank you for your time in putting this information together in such a straightforward, informative way. I am an administrator for a fibromyalgia Facebook group and would like to share this with my fibro friends to encourage them as you have me. I hope this is ok. Kind regards Alison JonesAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-54512960302934613412015-09-12T23:21:10.249+01:002015-09-12T23:21:10.249+01:00Thank you. :D I think all our little waves we ar...Thank you. :D I think all our little waves we are making are gradually building to the storm we need. xxSally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-2891665159068944082015-09-12T22:59:24.306+01:002015-09-12T22:59:24.306+01:00Great presentation Sally. It's really useful t...Great presentation Sally. It's really useful to frame patients in the context of being a resource, because most of us end up knowing more about our illness than our GPs. Our experience should be infoming research and how ME is managed within the NHS and we should all be working together. Gwenfar's Gardenhttps://www.blogger.com/profile/07326735419091325096noreply@blogger.com