Journal of IiME Volume 3 Issue 1 www.investinme.org WHAT I WANT FROM an ME SERVICE This article appeared in our Journal and on IiME’s web site in August 2007 and was written by Linda Crowhurst, a severely affected person with ME, As we plan to discuss the ME Clinic at the IiME Conference it was felt appropriate to republish this. I need : • Acknowledgement that ME is a WHO (ICD 10 - G93.3)defined neurological disease. An appropriate biomedical definition. • Appropriate diagnostic criteria that acknowledge the wide number of specific physical symptoms. • A biomedical clinician who can recognise the symptoms of ME and their impact. and make appropriate recommendations, based on current physical research. • Appropriate biomedical tests and scans that prove that I have a physical illness and illuminate what is going wrong in my body. • An appropriate biomedical assessment that will provide a medically-informed report about my illness and disability. • Acknowledgement of severe disability so that support can be given to claim benefits and grants etc, to enable true entitlement. • Careful testing and monitoring before any drugs are prescribed. • Advice based on awareness to ensure safe practice and safe treatments regarding how to deal with other medical conditions and illnesses that might arise. • The neurological symptoms to be explored , prioritised and validated. • Access by phone for specific symptom management / backup. • Home visits from a biomedical clinician. • A service that is actively educating other clinicians and paramedical staff regarding the true physical nature and impact of this disease. • The opportunity to choose to participate in Invest in ME (Charity Nr. 1114035) physical research so that people who have severe ME can be reflected in any research evidence compiled. • A service that is particularly aware of the severity of my symptoms and the high level of post-exertional malaise and post-exertional fatigue I experience and can accommodate them; so that I can be seen and given proper ongoing support. • The name "ME" to be used, as opposed to "CFS". What I do NOT want from an ME Service • A focus upon "fatigue". • A "therapy"-led service • To be included with undefined Chronic Fatigue illnesses and states. • A psychosocial model of care. • To be offered CBT and GET, as these are both dangerous and unsuitable for people with ME. • To be patronised by medical professionals who do not believe that I have a physical disease . • To be downgraded and treated as if my very real and severe neurological symptoms, such as paralysis, spasms, parasthesia and pain are insignificant or psychiatric in origin. • To be offered psychiatric - originated management techniques , charading as treatment for this physical illness. • To be described as "tired". • Pretending to meet the needs of people with ME but actually working to a psychiatric paradigm. • Any service based upon the Fukuda or Oxford criteria. Page 55/76
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