Comments for Edinburgh M.E. Self help Group http://www.edmesh.org.uk Just another WordPress weblog Mon, 01 Dec 2008 18:16:41 +0000 http://wordpress.org/?v=2.5.1 Comment on Why Join by Edinburgh M.E. Self help Group » Events » Christmas Events for Members - 7th & 19th December http://www.edmesh.org.uk/why-join/#comment-57 Edinburgh M.E. Self help Group » Events » Christmas Events for Members - 7th & 19th December Wed, 15 Oct 2008 19:24:40 +0000 http://domain1911989.sites.fasthosts.com/?page_id=34#comment-57 [...] but not the Xmas lunch. If you are not an edmesh member, why not consider joining us? See our joining page for more information.  Email this article to a [...] [...] but not the Xmas lunch. If you are not an edmesh member, why not consider joining us? See our joining page for more information.  Email this article to a [...]

]]> Comment on Why Join by Edinburgh M.E. Self help Group » Events » Union Canal Boat Trip - Friday 17 October http://www.edmesh.org.uk/why-join/#comment-41 Edinburgh M.E. Self help Group » Events » Union Canal Boat Trip - Friday 17 October Mon, 22 Sep 2008 10:29:05 +0000 http://domain1911989.sites.fasthosts.com/?page_id=34#comment-41 [...] you are not a member, why not consider joining us? Read about the benefits of membership on our joining page.  Email this article to a [...] [...] you are not a member, why not consider joining us? Read about the benefits of membership on our joining page.  Email this article to a [...]

]]> Comment on NHS Lothian and You! by ME/CFS care in Scotland… « Ron’s Rants… http://www.edmesh.org.uk/2008/08/nhs-lothian-and-you/#comment-17 ME/CFS care in Scotland… « Ron’s Rants… Wed, 20 Aug 2008 10:42:08 +0000 http://www.edmesh.org.uk/?p=62#comment-17 [...] In Scotland, Lothian NHS has been accused, by Edinburgh MESH (MESH = ME Self Help, for those readers outside the ME community), of sandbagging over a report into ME/CFS care in the area. You can download a copy of the report from the Edinburgh MESH website, here. [...] [...] In Scotland, Lothian NHS has been accused, by Edinburgh MESH (MESH = ME Self Help, for those readers outside the ME community), of sandbagging over a report into ME/CFS care in the area. You can download a copy of the report from the Edinburgh MESH website, here. [...]

]]> Comment on NHS Lothian and You! by webmaster http://www.edmesh.org.uk/2008/08/nhs-lothian-and-you/#comment-16 webmaster Mon, 18 Aug 2008 17:00:26 +0000 http://www.edmesh.org.uk/?p=62#comment-16 This news item has now been picked up by the Edinburgh Evening News - see article here: http://edinburghnews.scotsman.com/health/Health-leaders-accused-of-39burying39.4398149.jp This news item has now been picked up by the Edinburgh Evening News - see article here:

http://edinburghnews.scotsman.com/health/Health-leaders-accused-of-39burying39.4398149.jp

]]> Comment on NHS Lothian and You! by Sue W http://www.edmesh.org.uk/2008/08/nhs-lothian-and-you/#comment-15 Sue W Sun, 17 Aug 2008 05:57:18 +0000 http://www.edmesh.org.uk/?p=62#comment-15 As an ME sufferer in England I read your survey with great interest. Although services are allegedly better here than in Scotland, in reality we face exactly the same problems as fellow sufferers in Scotland. The specialist ME clinics take a long time to get referred to, and once there all that is on offer is psychiatric treatment i.e. CBT and GET. Generally there is inadequate advice, disbelief and all the other things familiar to your members. We are left to drift on our own, at the mercy of sharlatans selling quack cures and fighting for benefit or anything else we need. But at least its across the country and not a post code lottery! One comment I would like to address is the one from someone saying it is not a life threatening disease. I thought this too and have since learned that our life spans are shortened by as much as 25 years and that ME will probably be the underlying cause of whatever it is that kill us. I hope that your report is not only published but picked up by other media groups too. Thanks to all involved for compiling it. Sue As an ME sufferer in England I read your survey with great interest. Although services are allegedly better here than in Scotland, in reality we face exactly the same problems as fellow sufferers in Scotland. The specialist ME clinics take a long time to get referred to, and once there all that is on offer is psychiatric treatment i.e. CBT and GET. Generally there is inadequate advice, disbelief and all the other things familiar to your members. We are left to drift on our own, at the mercy of sharlatans selling quack cures and fighting for benefit or anything else we need. But at least its across the country and not a post code lottery!

One comment I would like to address is the one from someone saying it is not a life threatening disease. I thought this too and have since learned that our life spans are shortened by as much as 25 years and that ME will probably be the underlying cause of whatever it is that kill us.

I hope that your report is not only published but picked up by other media groups too. Thanks to all involved for compiling it.

Sue

]]> Comment on Fiona’s Story by Carole http://www.edmesh.org.uk/2008/05/fionas-story/#comment-7 Carole Wed, 02 Jul 2008 12:34:39 +0000 http://domain1911989.sites.fasthosts.com/?p=25#comment-7 Hi Fiona, Thank you for sharing your story. I am about to place mine on here after having written it several weeks ago for our own site ( I run a site for M.E. sufferers in the Scottish Borders) So it's a little easier this time just being able to copy and paste it, rather than like the first time I wrote it down where it exhausted me for a a couple of days. So I do appreciate the effort you put, into placing this on here for us. Thank you. Carole.x Hi Fiona,

Thank you for sharing your story. I am about to place mine on here after having written it several weeks ago for our own site ( I run a site for M.E. sufferers in the Scottish Borders) So it’s a little easier this time just being able to copy and paste it, rather than like the first time I wrote it down where it exhausted me for a a couple of days. So I do appreciate the effort you put, into placing this on here for us. Thank you. Carole.x

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