http://www.chronicliving.co.uk/messageboards/ For Bringing People With ME/CFS Together en-US Thu, 29 Jul 2010 13:17:21 +0000 http://bbpress.org/?v=1.0.2 q http://www.chronicliving.co.uk/messageboards/search.php http://www.chronicliving.co.uk/messageboards/topic.php?id=5#post-5 Mon, 19 Apr 2010 19:14:29 +0000 EmilyCollingridge 5@http://www.chronicliving.co.uk/messageboards/ <p>Do you have severe ME?<br /> Perhaps you know someone with severe ME?</p> <p>Are you struggling with endless devastating symptoms, practical problems or emotional challenges? Maybe you're looking for information, support and guidance?</p> <p>You need "Severe ME/CFS: A Guide to Living", the comprehensive new reference book by Emily Collingridge</p> <p>"A book no severe ME sufferer should be without"<br /> says patient Frances G</p> <p>"The book every patient with severe ME has been looking for" says patient, Vikki G<br /> "If someone you care about has severe ME, I strongly recommend this book" says Lydia L, friend of a patient<br /> "An excellent source of support and information" says Jenny B, sister of a patient</p> <p>"A must read... It will literally change your life" says carer Chris B<br /> "The most comprehensive support document imaginable" says carer Christine H</p> <p>"Immensely useful to patients and professionals alike" says Prof Tony Pinching, ME specialist<br /> "This book has the potential to be very important" says Prof Ingvar Bjarnason, consultant physician</p> <p>SYNOPSIS<br /> Patients with very severe ME have innumerable questions about how to cope with their situation and often have nowhere to turn for appropriate help. This guide sets out to answer as many of those questions as possible. The advice is based on the collective experiences of patients, carers and professionals and covers a huge variety of topics including personal care, mobility, symptom and activity management, hospital admission, tube feeding, emotions and entertainment. The guide is designed to be a definitive reference tool for anyone whose life is affected by severe ME, whether personally or professionally. It covers numerous medications, types of equipment and other tools for helping patients with ME and those who care for them. Whatever the crisis, it is hoped that a patient of any age will find reassurance and coping strategies within the pages of this guide. In addition to detailed advice the guide provides contact details for a wide range of organisations and companies that may be of use to patients and specific information for many different professionals. It is the first comprehensive book to be created for patients with severe ME and has been praised highly by patients, carers and professionals alike. </p> <p>For more details and to place an order go to <a href="http://www.severeme.info" rel="nofollow">http://www.severeme.info</a></p> <p>Please consider joining the Severe ME/CFS: A Guide to Living Facebook Group </p> http://www.chronicliving.co.uk/messageboards/topic.php?id=4#post-4 Sun, 07 Feb 2010 15:33:21 +0000 admin 4@http://www.chronicliving.co.uk/messageboards/ <p>For a Link to the original article, please visit '<a href="http://www.cfids.org/archives/2001rr/2001-rr3-article01.asp">'CFIDS'</a>'. I tried 2 different antidepressants over a period of 3-4 months and ended up going cold turkey to come off them as I found the side effects to be worse than the fatigue.</p> <p>I'd take one of the pills at night and then I wouldn't wake up the next day, or the other one would just turn me into a zombie. I would be awake but emotionless. My experience wasn't positive.</p> <p>What were your experiences with them? </p> http://www.chronicliving.co.uk/messageboards/topic.php?id=3#post-3 Sun, 07 Feb 2010 13:00:23 +0000 admin 3@http://www.chronicliving.co.uk/messageboards/ <p>Share your thoughts on Jesscia's '<a href="../interviews/jessica-kellgren-hayes_pt1.html">'thoughts!'</a>' </p> http://www.chronicliving.co.uk/messageboards/topic.php?id=2#post-2 Sun, 07 Feb 2010 10:56:28 +0000 admin 2@http://www.chronicliving.co.uk/messageboards/ <p>In the UK if you are to visit your GP upon first diagnosis of CFS/ME, you wouldn’t be surprised to find that Graded Exercise is one of few treatments offered. There are studies to suggest that in a small number of people, graded exercise has improved the condition. One does have to ask the question, given how severe some of the symptoms can become, how a person severely affected needing a week or more bed rest to pay the price of even minor activity, could consider Graded Exercise of use.</p> <p>My own personal experience was not a positive one. I lived 13 miles out of town, did not have regular access to a car (and was declined any help by the government for disability allowance) and referred to physiotherapy treatment at the hospital in town.</p> <p>The therapist was warm and friendly and made me feel very comfortable with her experience with CFS/ME, and suggested that we try aqua therapy to begin with. I lasted 2 sessions of taking a 1 hour round trip by bus to the hospital, followed by 30 minute sessions of stretches and pulls within a small designed swimming pool.</p> <p>I would come home so tired, that I’d say it set me back. Any journey, especially by bus put stress on my body and any further amount of activity I found I could just not cope with. I stopped soon after. Maybe I could have stuck it out, but even that early on I found I was moving backwards, not forwards.</p> <p>One doctor described Graded Exercise as like defining the illness as a fitness issue. Would you prescribe 10 sessions in the gym for a bowel cancer sufferer and hope that their symptoms improve? Of course not, so why refer someone whose symptoms include negative response to any movement as being a regular treatment?</p> <p>Of course there are people whose ME is at an advanced stage, with the illness close to remission who may find this useful but the answer is management of what your body is telling you it can manage. There has to be a better response by the NHS to the illness in its initial stages. </p>