Journal of IiME Volume 5 Issue 1 (May 2011) 3 10 Inside This Issue Editorial Using Cardiopulmonary Exercise Testing to Evaluate Fatigue and Post-Exertional Malaise in ME/CFS 13 18 22 The Media and ME Letter from America International Science Symposium on ME 30 A UK Centre for Biomedical Research into ME 34 The Involvement of the PACE Trial Principal Investigators and the Director of the Clinical Trials Unit with the DWP 42 55 47 55 PACE is dead, long live PACE? CFS Education in USA Presenters at IiME Conference Conference Agenda Invest in ME (UK Charity Nr. 1114035) PO BOX 561 Eastleigh SO50 0GQ Hampshire, UK Tel: 02380 251719 07759 349743 E-mail: info@investinme.org Web: www.investinme.org Invest in ME (Charity Nr. 1114035) This is our seventh Journal of IiME and forms part of each delegate‟s conference pack at the 6th Invest in ME International ME/CFS Conference 2011. The Journal of IiME was created as a means of providing a broad spectrum of information on ME/CFS, combining biomedical research, information, news, views, stories and other articles relating to myalgic encephalomyelitis (ME/CFS). Our aim has always been to distribute this for free four times a year. However, due to the current size and financial limitations of IiME we can only provide a snapshot of the wealth of experience which already exists and continues to increase and currently we are only able to publish a maximum of two copies a year. We hope to change that in the future. Some years ago we wondered if a sea change was occurring in the perception of ME based on good science, objective data, effective advocacy and a long-overdue realisation from government and healthcare organisations (albeit forced by pressure from patient groups and researchers) that obfuscation and systemic bias in the healthcare services are no just or effective way to provide healthcare. We think this is borne out. When flawed research such as the recent PACE Trial is published then it is no longer the case that such a study is accepted without closer scrutiny. The improvement in information technology and the spread of social networking has allowed a better-informed patient base to question seriously the research, and the motives of researchers. When a study purporting to be researching ME does not achieve a single useful function then it is now the patients themselves who can critique such a study and articulate on the poor research as well as the waste of money. Patients are now empowered and will not accept mediocrity and prejudice in research. It only remains for the media to realise what a scandal has been occurring and for politicians then to force through good science via policy change. The government and the media have a lot of catching up to do. Listen to the patients is still a maxim to which healthcare providers, politicians and the media should pay heed. Continued page 4 Disclaimer The views expressed in this Journal by contributors and others do not necessarily represent those of Invest in ME. No medical recommendations are given or implied. Patients with any illness are recommended to consult their personal physician at all times. www.investinme.org Page 3/58
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