Journal of IiME Volume 7 Issue 1 seen by mostly all objective observers to be a waste of funding and of lives. On a more positive and deliberate note the Let's Do It For ME campaign has forced biomedical research into ME - by amazingly positive efforts by people who are not interested in complaining all the time without offering anything - but instead put their thoughts and energy into imaginative ways of crowd funding biomedical research - often pushing themselves beyond their limits. IiME supporters have been showing the real side of ME patients - people wanting to get better and willing to be proactive in achieving this. And thus, by their example, things change. The promise of treatments developed from the exciting research at Haukeland University Hospital in Bergen has generated campaigns by three European ME Alliance members - Norway’s ME Association, Sweden's RMEand Switzerland's Verein ME/CFS to fund this research. The MEandYOU campaign in Norway has an ambitious target to raise 7 million Norwegian Kroner in 90 days and has achieved a commendable result already. Education is another key to progress. This applies to education of medical professionals as well as politicians, the media, patients and the public. The IiME conferences have formed a crucial part of this education and served to provide a platform for the latest and the best biomedical research into ME – demonstrating how false is the belief that little is known about the disease. The charity has recently completed the distribution of 25 GP packs to GPs and GP clinics in Scotland. The packs contain information about ME, diagnostic guidelines, charity Journal and DVD and other items of specific information about ME which will help the healthcare professional better understand the disease and what progress is being made. Our conference DVDs allow a historical record of the conference events while at the same time making it available to those around the world who wish to hear of the biomedical research. The charity has heard many times of the usefulness of the DVDs and in many cases where they have helped patients and healthcare staff. Recently the charity began distribution of the latest ME guidelines – the International Consensus Criteria. Every conference delegate will have a copy in their conference pack. We have also been UK distributor for the printed copies of the Canadian Consensus Criteria. Invest in ME (Charity Nr. 1114035) (May 2013) The charity tries to help people with ME and has been involved in a great deal of campaigning and lobbying to raise awareness and gain a more valid perception in the media and healthcare departments and by the public. The charity recently met with Dr Martin McShane – NHS Commissioning Board Authority, Director - Domain 2- Improving the quality of life for people with Long Term Conditions). This meeting was requested by the Prime Minister after a constituent and supporter, Alex Hall, met with the PM and passed on a letter from the charity. At the meeting Dr McShane heard directly from two parents of a severely affected young adult with ME. The parents spoke with dignity and passion about the treatment of their daughter and Dr McShane patiently heard the terrible story of how parents were blamed for this disease affecting their child, and how healthcare services had failed in their daughter’s case. Although not unique such direct imparting of knowledge to a prominent healthcare official of how severely affected patients with ME are managed and treated in UK is relatively rare in our experience. IiME also had proposals to Dr McShane which could be used to move things on. We suggested using this area (ME) as an example of a difficult area of medicine and use it as a model for nationwide services. We suggested an ME consultancy role for CCGs to be established. We proposed setting up clinical trials which could be initiated under the auspices of the local university's clinical trials team. As the NHS can participate and perform research so we suggested two such trials to begin with. IiME proposed setting up a trial of telemedicine, where severely affected patients could be treated by an ME consultant who would not have to be physically present, and where a GP or other professional could sit in and learn about ME. IiME suggested that a standard service model could be used for ME, and tested, in East Anglia. Other commissioning groups would be able to see the www.investinme.org Page 4 of 36
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