ME Association Recipient: Sir Andrew Dillon Letter: Greetings, M.E. is not a functional disorder Comments Name Location Date Comment Carol Bryant Mottram, 2017-09-27 My daughter has ME and clearly this illness is NOT in her England, UK mind it is a physical illness Clare Crofts Rochdale, 2017-09-27 My daughter had Very Severe ME for the last 6years, was England, UK diagnosed as terminal 18 months ago and died in May this year. This disease is horrendous and needs the medical community to take it seriously Sheena young Prestatyn, 2017-09-27 M.E is not a functional disorder and should not be treated as Wales, UK such. Julie Holliday Shrewsbury, 2017-09-27 I have ME and have been treated appallingly by the NHS. England, UK Paul Winter Hailsham, 2017-09-27 I have ME. Some hospitals, such as the National England, UK Neurological Hospital in Queen Square, London, are already routinely ignoring the NICE guidelines and diagnosing people with ME as having FND. This is unacceptable given the mounting evidence that ME is a neuro-imune disease. Jane Iles Cheddar, 2017-09-27 This is too important. NICE need to look at the facts and England, UK listen to ME specialists and more importantly, the sufferers Kathie Cortese UK 2017-09-27 I have got M.E and I know it's not a " functional disorder" NICE need to use more recent up-to-date world studies, and consult with ME patients, and experts on ME Jayne Glover Warminster, 2017-09-27 I don't want other people to suffer the indignity and England, UK humiliation that I have endured for the last 15 years. Honour Luckins Bradford-on-Avon, 2017-09-27 It's about time we sufferers of this awful, awful disease were England, UK given the respect and treatment we deserve! Simon Elliott Spalding, 2017-09-27 There is enough medical evidence to shoe that this is a England, UK physiological disease and NOT a functional condition. Stop playing politics with these people and their health. It is cruel, pathetic and discriminatory. Carol Hart Glasgow, 2017-09-27 My daughter was diagnosed with ME at the age of 15 and Scotland, UK really has no input from medics, most GP's don't even understand the condition Caroline Waller Weston-super-mare,2017-09-27 My son has had this terrible illness for the last six years and England, UK robbed him of his childhood and teenage years adam stopford Manchester, 2017-09-27 All the research is clear this is not a functional disorder. As England, UK well as being insulting, this has a massive impact on the treatment of patients and is dangerous as accurate advice not to over do it is so important at diagnosis to prevent life ruining relapses. Name Location Date Comment Joanne williams Darlington, 2017-09-27 Only when you have ME can you truly realise how strong England, UK your mind really is .. to want to and try to do whatever, whenever you can, everyday, despite the fact your body no longer works as it did - that is a true testament to those suffering this illness. If the mind and willpower could offer any improvement or indeed recovery -Then ME sufferers would not be ill at all ! Mind is willing -Body not able. Joanne Stephen Parker Preston, 2017-09-27 I am an ex athlete, super fit once. No mental problems but England, UK struck down by this insidious illness. Had zero help from med field and so I battle on daily. Claire Haresign Sheffield, 2017-09-27 I’m signing because I have recently been diagnosed with England, UK ME/CFS. Maureen Mcintyre Troon, Scotland, 2017-09-27 I have lived with ME for over twelve years. It severely limits UK what I can do physically. I can swim, do gentle Pilates, some gardening, day to day domestic tasks. The length of time I can do these is dictated by the physical capacity I have, which varies because I have ME. I have tried doing other activities which I'd love to do - play golf, dig my garden, go for long bike rides. Whenever I try these, my body physically reacts and I have 'payback' , reverting to a much more reduced level of physical capability for a period of time, usually weeks, sometimes longer. My brain wants to do these things, even after twelve years. I want to live a full life without constraint. I keep trying. My body won't let me. I believe I have a physical disorder. I do not believe That there is a psychological reason for my physical limitations. Abigail Longhurst Yate, England, 2017-09-27 I have m.e and everyday is a fight to get through. People UK with this condtion need to be taken seruously and given the correct care, it changes our lives. Peter Earl Colchester, UK 2017-09-27 This attitude has damaged too many. Claire Dibley London, UK 2017-09-27 I have ME and have been treated terribly by the NHS. The ME clinic i was sent to was a joke, with the woman reading off handouts and out of a book telling me i should basically give up on any form of life. I have had to change career and struggle with no support from the healthcare system. Bethany Hart Glasgow, 2017-09-27 I have M.E and I want a change! Scotland, UK Phil Murray Bristol, England, 2017-09-27 They are WRONG - this is NOT an emotionally driven UK disorder. As everyone suffereing from it knows. Sara Hughes Bungay, 2017-09-27 I have had severe ME for many years. Polite scepticism, England, UK and on occasion outright sneering by poorly informed and prejudiced medical professionals is not something I am alone in experiencing. Jacqueline Dunfermline, 2017-09-27 So painful and debilitating Hershaw Scotland, UK Name Location Date Comment Jane Whittaker Perranporth, UK 2017-09-27 This will leave ME patients at the mercy of psychologists. We need treatment and help not CBT and GET. Jamie Sugg Cambridge, 2017-09-27 I have a supportive family and friends; I registered as England, UK self-employed three years ago as an artist and am trying to work more; I’m a positive person and always try to get out of bed at a good time each morning and try to be active. None of this ‘positivity’ and ‘stable emotions’ stops my symptoms from waking me up during the night with leg muscle pain. None of it stops my brain fogging and struggle to read stories to the children. None of it stops my speech slurring, eyes blurring and my balance faltering. Clearing something neurological has happened but once you get a CFS diagnosis that’s it - no more tests and no more help. To now face a different, more condescending diagnosis that we’re ‘emotionally unstable’ and bringing this on ourselves? Appalling. lucy jewell Plymouth, 2017-09-27 I suffer from ME/CFS England, UK catherine wilson Yeovil, England, 2017-09-27 I have m.e I am cbt therapist and I can tell you it's a real UK disease and needs more funding for research to find a proper treatment. Cbt is not the cure just a coping mechanism for a significant and traumatic life change that isn't your choice. helen oliver esher, England, 2017-09-27 My daughter seriously ill with neuro immune disease NOT UK emotion related NOT psychological related. carol wilson Zelah, England, 2017-09-27 Having been a specialist therapist for 20 years working with UK cfs/me patients I can assure you that this is not a functional illness. catherine wilson Yeovil, England, 2017-09-27 Enough already of the politics and help us. So many people UK are suffering Emma Gardener Stoke-on-Trent, 2017-09-27 I live with M.E/ CFS... If only I could 'think' it away.... It is real, England, UK it is painful and it is having huge impacts on thousands of people who deserve to be believed and taken seriously. Only by doing this will research move forward in finding causes and cures. Amy Bakewell Thornton, 2017-09-27 In order to get better after 23 years of relentless suffering England, UK i need improvements in policy this would be a huge backwards slide. Graham Hawkins Reading, 2017-09-27 I've had it for 29 years from the start in a wheelchair and England, UK having to go to the toilet on all fours In a dark room away from noise It's cruel illness you can feel great one day then the next be bad again When I was diagnosed the doctor said pretend you have had your leg cut off and put up with it and he was the second opinion I'm now 66 years old and over the years the crap ideas that keep coming out I would just like a cure to be found Name Location Date Comment Samantha Tobermory, 2017-09-27 Please follow the medical evidence, and not political and crowther Scotland, UK financial notions. Even though genuine research has be limited in favour of these financial and political notions.... there is still plenty of evidence to dispel the myth of ME being a functional disorder, or MUPS. Hopefully truth, justice, honesty and genuine science will eventually prevail. ME sufferers and Carer's and friends/relatives have made our views so very clear. Please start listening.... lives are being lost. Sam ward Sittingbourne, 2017-09-27 I have ME and am saddened by the lack of understanding England, UK and support for this disease Pauline Ross New Malden 2017-09-27 It is scandalous that there is so little known about and so Surrey, England, little treatment for this physiological illness.