Journal of IiMER Volume 13 Issue 1 Invest in ME Research Long term illness with ME Having ME for decades brings with it many different issues. Apart from obvious direct effects of the illness on one's life, with the impact on family, on career, on financial situation - there are the more insidious and rarely mentioned issues - loneliness, isolation from society, further health issues with new symptoms and possible co-morbidities developing, invisible to healthcare systems due to the label of ME. Care and compassion may also be casualties of health systems that are influenced by commercial or career interests and have no funding and no time for patients suffering from long term ME. People who currently have had an ME diagnosis for several decades will know of all of these issues. If a patient is "lucky" enough to receive attention then they are quite likely to be at the end of a long queue. Healthcare systems that cannot understand the disease, let alone treat it, will have no capacity for managing the longer term consequences. For those recently diagnosed with ME the thought of the situation getting worse, or being long-term, is something that does not initially come to mind. Long term illness from ME is something that is not discussed much - although one can often hear of stories of those who have to endure this disease for decades. Even with their disease these long-term sufferers will have hoped for recovery, for research that brought forth treatments. Many might also have become advocates and contributed what energy they had to changing things for the better, to raise hope that things would be different. It is testimony to the courage and resilience of those long-term ill that they continue to hope, to campaign, to trust for a better life. It is a sad and continuing indictment on successive governments and health departments and, especially, on research councils and their appointed guardians of research into ME that they have failed these people. We invited Dr David Bell (Lyndonville NY, USA) to speak about his longitudinal study at our IIMEC6 conference in 2011. Dr Bell presented his work on the 25-year follow-up of the young people from the initial illness that triggered his research. He described this initial outbreak in 1985 in a small rural community just south of Toronto. 210 people remained ill following a flu-like illness. Many more had the illness, but had recovered by 6 months. Those remaining ill were finally diagnosed as suffering from ME/CFS. 60 were children and adolescents. The 13 year follow-up was written up in the Journal of Paediatrics. 80% described themselves as doing well. Half of these still had symptoms but leading a reasonably normal life, the other half seemed OK. 20% had ongoing illness and were "disabled". The book Lost Voices from a Hidden illness eloquently brought out some issues regarding longterm illness. Those patients who have had ME for several decades were young at the beginning, had dreams and ambitions, aspired to do more. Invest in ME Research (Charity Nr. 1153730) He then asked, "How should recovery be defined?" - "Is it absence of symptoms or adaptation?" If the answer is adaptation, this leads to confusion and a false perception of health. Factors included here would be: patient looks OK, tests are normal, specialists come up with no diagnosis and there is a lack of evolution into an illness such as MS. This confusion is damaging for adolescents. The current study included a follow up of 28 people, and a wide range of assessment tools was used. 3 had developed malignancies (thyroid cancer, cervical cancer and leukaemia) and were excluded. investinme.org Page 27 of 52
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