Journal of IiMER Volume 13 Issue 1 Invest in ME Research and abroad for his specialist advice and treatment and frequently were referred by hospitals and their own doctors. Dr Irving Spurr was a GP in the rural Weardale Practice in County Durham for 28 years until his retirement in 1997. Listen to the patients Stories of ME Over the years Invest in ME Research has received many stories of people enduring ME, and who have experienced the lack of knowledge about the disease, the ignorance. Some long stories, some short. He was committed to doing his very best for his patients and this led him to become a pioneering researcher into ME. During the early Eighties, a boy of 14 came to see him with all the symptoms. Irving wanted to get to the bottom of what was causing it, but ME was, at the time, belittled in NHS circles as not a ‘real’ condition (some would say little has changed). He became heavily involved in the fledgling John Richardson Research Group, a medical charity in the north-east of England, ultimately leading its work to promote greater understanding and awareness, as well as more effective treatment. His commitment included running ME clinics, with his nurse wife Eileen at his side, but it was extended to delivering lectures all around the country and building links with colleagues in Norway, Canada and Israel. He continued with the clinics until the onset of the ill-health that preceded his peaceful death. In recent years his view on ME — once a lonely one — increasingly become more accepted and mainstream, to the benefit of many sufferers from this disease. Yet he never let his crusade for ME cause him to short-change his other patients. The John Richardson Research Group made a wonderful donation to Invest in ME Research to continue to establish a national and international centre for ME and translational medicine in this area. All underlying the incomprehensibility of retaining the status quo in terms of research, treatments and services – that has suited some organisations, and individuals and benefited those taking salaries or maintaining careers based on this state of affairs. So it is always surprising that the old adage “listen to the patients” is something often ignored. We pointed this out in Listen to the Patients http://www.investinme.org/IiMER-Newslet-180901.shtml where it seems to go wrong, even in a country which has everything required for providing an example of how to perform research into ME, how to develop services for people with ME and how to treat ME as the organic illness that it is. It is sobering to read some of the stories from patients, and carers – even just clips. We alluded to some in them in the Advent Calendar Day 14 article Humour and ME article But definitely not with any humour is the story of the family of Rose - "The consultant said that the some of the symptoms Rose had were not due to ME (i.e. memory loss and paralysis) and that her ME could be a cloak for PRS (Pervasive Refusal Syndrome)." from ‘An ME Carer’s View’ http://www.investinme.org/mestory1019.shtml Invest in ME Research (Charity Nr. 1153730) investinme.org Page 24 of 52

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