To those in the UK: Simpsons, on the ProHealth board, asked me to post the following. Rich NOW IS THE TIME - to say what choices you want for ME. The NHS are asking us what choices we want in our health care choices Join us in this protest to the NHS choices White Paper Consulttion which closes14th Jan on StoneBird http://www.stonebird.co.uk/ Dr Speedy's Nice Guidelines Blogspot http://niceguidelines.blogspot.com/2011/01/myalgic-encephalomyelitis-white-paper.html This reply to the White Paper has been written by patients for patients and is suitable for all levels of severity. The discrimination and inequality in the current system is unacceptable and a breach of our rights. We call for an end to this discrimination, and our right to be involved in the planning of our health care services to be honoured and the patient voice heard loud and clear We hope we have stated the views, concerns and bio medical needs and choices we want, not only in diagnosis, but also in treatment and social care. We as patients feel that the Lightening Process (LP) , Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) is no choice at all. We want equal access to appropriate specialists such as neurologists cardiologists, immunologists and a fair diagnosis using the Canadian Guidelines, with correct testing and treatment. This is the choice we want, not harmful CBT and GET which our shown by patient surveys to worsen condition. We condemn the Wessely school and their vested interests, and dominance in the NICE guidelines as an unfair representation of the facts which leads to discrimination which is why they have been declared unfit for purpose. The needs of the severely ill are neglected, with no home service available often the most in need get the least service. because their disability does not allow them to access services. We call for equal access for the 25% of patients who are severely ill bed and house bound who have no access to choice for ME treatment or any other healthcare needs. Correct services need to be provide via home visits from all specialists involved in care. Otherwise the severely effected will continue to suffer discrimination in accessing appropriate bio medical treatments. Let your voice be heard loud and clear; the more who reply the stronger the message is Now published ready for downloading and sending with full instructions in pdf on StoneBird http://www.stonebird.co.uk/ and also on Dr Speedy's Nice Guidelines Blogspot http://niceguidelines.blogspot.com/2011/01/myalgic-encephalomyelitis-white-paper.html HOW to take part - Full instructions are in the links above incuding a sample covering letter Download the response document via above links Attach it or paste it into to your email subject Severe ME choices response send it to : By email to email@example.com cc. us at firstname.lastname@example.org so we can log the response figures By post to : Choice Team, 11th floor, New Kings Beam House, 22 Upper Ground, London SE1 9BW. Below is a sample for your email or letter let them know if you have made additions, use bold so they can find them easily : Dear Sir/Madam I submit the following document for inclusion in the white paper consultation, I have submitted research links in the document which support this submission and ask you not to reach any decision regarding provision of choice for ME patients without fully exploring this evidence. Yours sincerely, Please Repost Far and Wide thank you ME Choices Team!