Journal of IiME Volume 2 Issue 2 Wheelchair Use and Attitudes (continued) The fact that modern lightweight wheelchairs are much more adaptable and adjustable would also be a benefit; the “one-size-fits-all” NHS philosophy actually causes a lot of damage, discomfort and pain to users whose wheelchairs do not fit them. My week using the NHS Iron Maiden was enough to convince me of the truth of this. There is no way that I could maintain the lifestyle and independence I enjoy if my modern lightweight were to be exchanged for a standard NHS-issue chair. The original modern lightweight wheelchairs were designed by wheelchair users. I consider this to be a crucial point. Able-bodied designers of wheelchairs do not have inside knowledge of what is needed in a wheelchair. If the NHS insists on using ablebodied designers and prescribers of wheelchairs, these people should at least be compelled to use them for a month or so, just to see what it is like, and experience for themselves what people really need and want. The Need for Education There seems to be a considerable need for education about wheelchairs and their use, amongst all three population groups. I do not know the best way to get this message across, but the purpose of this article is to reach as wide a forum as possible, where it can be read and acknowledged. In particular I should like it to be read by the professionals involved in the care and treatment of disabled people. It may make them stop and think about their attitude, at least— somehow we’ve got to get this message across. These professionals’ entrenched attitudes are doing us more harm than good, and causing no end of distress, when their role and function in life should be to help us. Pushing people to expend their precious reserves of energy, when they could be helped by the sensible use of such a marvellous device as a wheelchair, is totally wrong. We need encouragement, sensible advice and affirmation, not obstruction and condemnation. Finally, sitting down as opposed to standing up is not necessarily a negative thing. At the recent Beijing Olympics, the Aussies accused the Brits of earning most of their medals sitting down!!! The Use of Aids for People with ME – an Alternative View Let us contrast the previous article Wheelchair Use and Attitudes with the views expressed by NICE in their recent Guidelines for ME/CFS and the submissions from St Bartholomew's Hospital Chronic Fatigue Services to NICE in response to those same guidelines. St Bartholomew's Hospital Chronic Fatigue Services is one of the CNCC clinics set up by the government for treating people with ME. As in the case of almost all of the CNCC clinics it offers a biopsychosocial view of ME and is headed by a psychiatrist. These are the views submitted by St. Bartholomew's Hospital Chronic Fatigue Services for the NICE Draft Guidelines Development Group, in relation to such as wheel chairs for people with ME/CFS (source - Invest in ME (Charity Nr. 1114035) http://listserv.nodak.edu/cgibin/wa.exe?A2=ind0709A&L=COCURE&P=R2063&I=-3&m=17215) =============================== (i) On Disability aids and equipment: The NICE Draft text stated - For adults and children with moderate or severe symptoms, provision of equipment and adaptations (for example, a wheelchair, blue badge or stairlift) to allow individuals to improve their independence and quality of life should be considered, if appropriate and as part of an overall management plan. Comment from St Bartholomew's Hospital Chronic Fatigue Services: (continued on page 54) Page 53/74 www.investinme.org

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