Journal of IiME Volume 2 Issue 2 www.investinme.org The Use of Aids for People with ME – an Alternative View “We disagree with this recommendation. Why should someone who is only moderately disabled require any such equipment? Where is the warning about dependence being encouraged and expectation of recovery being damaged by the message that is given in this intervention? We are in no doubt that it is a powerful message for a therapist of any sort to provide such aids. Our view is that such aids should only be considered by a multi-disciplinary therapeutic team as a whole, and usually in the context of providing a temporary means for a patient to increase their activity levels. An example would be providing a wheelchair for a bed-bound patient as part of their active rehabilitation programme. In our opinion, such aids should never be seen as a permanent solution to disability in this illness.” ------------------------------------------Another part of the NICE Draft Guidelines: 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. In reply to this St Bartholomew's Hospital Chronic Fatigue Services wrote: “Equipment and aids may hinder recovery as much as help it, and their prescription needs to consider both outcomes. We believe disability aids can help a patient towards recovery if their use encourages a widening and increase in their own activities, on a temporary basis, as a means of supporting a rehabilitation programme. They should rarely if ever be used for patients with only moderate disabilities.” ------------------------------------------From their web site - [http://www.bartsandthelondon.org.uk/formedia Invest in ME (Charity Nr. 1114035) /press/release.asp?id=1216] St Bartholomew's Hospital Chronic Fatigue Services claim that theirs is a centre offering pioneering treatment for CFS/ME. “The centre is a unique partnership between three separate Trusts which allows patients to experience an integrated “mind and body” approach involving physicians, psychiatrists, psychologists, physiotherapists and occupational therapists.” The St Bartholomew's Hospital Chronic Fatigue service contains a recommended reading list on its web site which offers literature from wellknown psychiatrists. The treatments offered at St Bartholomew's Hospital Chronic Fatigue Services are indicative of their approach to ME/CFS – “The treatment options that are available at our service include Cognitive Behavioural Therapy (CBT) provided by Clinical Psychologists, Graded Exercise Therapy (GET) provided by Physiotherapists and a Return to Work Programme and activity management run by Occupational Therapy. “ and “we are one of the study centres involved in the PACE trial. This large-scale trial is the first in the world to test and compare the effectiveness of four of the main treatments currently available for people suffering from CFS/ME. “ despite the PACE trials being condemned by ME patients for their use of the flawed Oxford diagnostic criteria [see http://www.investinme.org/Documents/Journal s/Journal%20of%20IiME%20Vol%201%20Issue%20 2.pdf]. The Oxford (1991) criteria have been criticised for being too broad -- they specifically include those with psychiatric fatigue and they potentially capture people suffering from “fatigue” that occurs in 33 different disorders -and for specifically excluding those with neurological disorders such as ME. Page 54/74

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