Journal of IiMER Volume 10 Issue 1 For those chronically affected patients here in New Zealand who have tried everything possible to manage their ME/CFS over a long term of the illness, the additional apparent quotes in the publicity surrounding the follow up PACE study article from the authors - that it was a minority who thought ME/CFS was a chronic illness and was caused by a virus - were not well received. Indeed, many believe their illness to have been triggered by a viral infection - often Epstein Barr-mediated glandular fever. Such ME/CFS patients have often used highly innovative ways to achieve a constructive life despite the serious restrictions to their life choices because of the symptoms of the illness. Post activity malaise has been a real part of these debilitating effects. As discussed in one of our pilot studies below, this can be documented after exercise by physiological testing. Ironically, medical students in training, and the wider group of health professionals in New Zealand, regard the Lancet as an iconic fount of medical knowledge, and have enormous respect for Oxford as a research University. Therefore, those who rely on such sources, and have no prior contact with ME/CFS patients or appreciation of the often lifetime debilitating features of the illness, will be left with a distorted view of ME/CFS not helpful to the management of their patients. Despite this confusion, the situation in 2016 in New Zealand is looking promising for New Zealand patients. Now, at the University of Otago Medical School, in a module on unexplained diseases, teaching and discussion on the topic of ME/CFS is facilitated by WPT to what has proven to be a highly June 2016 responsive young audience of 3rd year medical students. The most common question asked, albeit with some anxiety by the medical students in their sessions on ME/CFS is ‘How do I respond to an ME/CFS patient?’ My (WPT) simple response has been ‘Acknowledge that the patient is ill and needs your empathy and help - while you are determining whether their illness is consistent with the clinical guidelines for ME/CFS’. They, and all General Practitioners in New Zealand now receive the 2014 edition of the international ‘Primer for Clinical practitioners’6 to which Dr Vallings contributed as part of the international writing panel. In addition, Dr Vallings has written two excellent books, one for adult patients and their practitioners7, and one for teenagers8 bewildered by an ME/CFS mediated dramatic change in their health status. It is anticipated the situation for ME/CFS patients countrywide will improve as tomorrow’s young doctors graduate and spread throughout the workforce. The students were surprised that, despite the lack of general community knowledge and understanding of ME/CFS, the number of New Zealand patients is about half of those diagnosed with Alzheimer’s disease in New Zealand9. In common with ME/CFS, Alzheimer’s disease still has no simple molecular diagnostic test, and as yet no effective therapies. ME/CFS however, receives much less publicity, less national and international focus, and considerably less research funding than Alzheimer’s disease, and so there is critical need for better knowledge and a higher public profile. However, despite ongoing confusion as to the nature of ME/CFS, much new exciting global research and Invest in ME (Charity Nr. 1114035) www.investinme.org Page 48 of 77
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