Journal of IiMER Volume 13 Issue 1 Invest in ME Research The remainder (25) were represented by 3 groups. 2/25 (8%) were well. 18/25 (72%) had remitting illness - they considered themselves all right, but scores indicated they were not well. The third group - 5/25 (20%) had persistent ME/CFS. They considered themselves disabled with severe symptoms and reduced activity. These people were on disability pensions, but ME/CFS was not used as the diagnosis to be eligible, and the illness was often called other names to ensure the benefit. Dr Bell pointed out how people do learn to adapt to this illness. Many seem to recover but then slide down again. The worst symptoms seem to be associated with sleep and pain. He described his disability scale from 0-100 with 100 being entirely well. Many of these patients scored around 30. He felt one of the most important questions for the clinician to ask was the number of hours of upright activity attainable each day. In his current study, controls scored 15 hours, the persisting severe group 1-5 hours and the remitting group 13 hours. In summary, Dr Bell concluded that at follow up 72% had mild to moderate illness, although considered themselves OK. There was health identity confusion, by remembering self being much worse, and now considering self "well". Time will tell the long-term outcome. He felt strongly that he was looking at the natural history and course of the illness rather than any medication or vitamins promoting recovery. The long-term ME patients constitute an area which is almost totally neglected - something that should be of major concern to healthcare providers, along with the severely ill and children with ME. The long-term ill from ME are not only those in old age either. Younger people are included in this group if they were diagnosed with ME in their early teens. Yet it is ignored, buried in the soundbites of the media who remain oblivious to the reality of ME; callously removed from the policies of research councils and government health departments due to apathy; unable to be researched properly due to the lack of funding from those agencies responsible for funding; and often let down by support organisations who take subscriptions but do little to Invest in ME Research (Charity Nr. 1153730) investinme.org Page 28 of 52 convince anyone of this neglected section of society. We can only hope that we can soon get to a situation where all people with ME will get adequate treatment based on results from wellfunded biomedical research. This subject needs to be included in debates about ME in any parliament setting. It needs to be recognised and addressed in healthcare systems. The long term ME patient needs to be represented. In the meantime, we recognise the courage of those who have had to endure ME through many years with little or no support and yet who continue to remain hopeful and try as best they can to help to change things.
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