Journal of IiMER Volume 10 Issue 1 patients can balance the disadvantage of having only a limited base number of patients available for recruitment. ‘Precision medicine’ is being applied to ‘rare diseases’ internationally where patient numbers are naturally small, and yet intense molecular studies are starting to reveal new biological insights into these illnesses2. Despite the advantages of a small wellcharacterised patient group, those health practitioners in New Zealand who understand that most ME/CFS patients do not recover from their illness, are often reluctant to take more than a very small number of such patients into their practices. Additionally, until very recently, medical students received no formal training in ME/CFS, and so graduated without the necessary knowledge to assist their professional response when confronted with a potential ME/CFS patient. There are still pockets of practitioners who remain sceptical of the validity of ME/CFS as a distinct illness. This often leads to frustrated patients looking constantly for an empathetic health practitioner in their own town or city who has some knowledge and understanding of their illness. The confusing and conflicting publicity in 2015 from opposite sides of the Atlantic on the nature of ME/CFS has not helped this situation in New Zealand. On the one hand, the Institute of Medicine of the National Academy of Sciences in the United States published a report in February3 that emphasised the serious and chronic nature of the illness. The authors expressed regret that many practitioners had not taken patients June 2016 more seriously. It further concluded the disease needed a new name to replace the name used in the United States, Chronic Fatigue Syndrome (CFS). The well-meant suggestion of Systemic Exercise Intolerance Disease (SEID), emphasising post exertional malaise as the key characteristic of the illness, Professor Warren Tate however, would be unlikely to add more gravitas to perceptions of the disease from either the public or the health profession. On the other hand, a conflicting Lancet Psychiatry report was published in October, updating4 the PACE study of 20115 arising from Oxford University, which together with associated publicity advocated exercise and positive thinking as the best mix for alleviating ME/CFS symptoms Invest in ME (Charity Nr. 1114035) www.investinme.org Page 47 of 77

48 Publizr Home

You need flash player to view this online publication