Journal of IiME Volume 8 Issue 1 May 2014 The Invest in ME/UCL Rituximab Clinical Trial An International Event When Invest in ME announced in June 2013 that we were planning a UK trial of rituximab for ME there was a great deal of interest raised. The rituximab trial follows the exciting work which has been, and is being performed in Norway by the Haukeland University hospital researchers Professor Olav Mella and Dr Oystein Fluge. The response from around the world emphasises how great the need is for high-quality biomedical research into ME. This has been sorely lacking for a generation with funding mostly being squandered on psychological interventions which have no hope of finding cause or making available effective long term or permanent treatments. The research work in Norway was backed up by impressive and dedicated patient advocacy by the Norwegian ME Forening which has raised the profile of ME in Norway and throughout the world. Their tireless work encouraged IiME as did the more recent success of the fantastic Norwegian ME and You campaign to raise funds for the Norwegian research. These efforts have created a real sense of hope amongst patients. Our wonderful supporters have risen to the occasion and their efforts have validated the decision to initiate the UK trial with UCL. The imaginative Let’s Do It For ME campaign has continued to produce ideas to raise funds and awareness and The MATRIX is an example of a unique method of achieving both. We have had donations from around the world, ranging from £1 to £3,000. A very generous foundation has donated £25,000 already and pledged £200,000 toward the clinical trial. This was in memory of the late Roger Heindry who sadly passed away in March 2013. We are very grateful for this extraordinarily generous offer from the donating foundation. It was an amazing gesture from compassionate and caring people who want to make a difference. It allows the hopes of many patients to become a reality – allows a vision to be maintained that there is a future for ME patients and that we, patients and families and supporters, can make a difference. A few good people can change things. One event can change everything. As such, IiME and our supporters have managed to initiate and organise something which many thought was not possible. This is an international event and is followed and funded by many around the world. Our objective is to ensure that a clinical trial of rituximab is allowed to be performed by the best researchers possible and to ensure that this trial makes a valuable contribution to the collective ME research pool. We have stated before that we believe in achieving results by the most direct method, where possible. For IiME the issue of making rapid progress in ME research is important, it is personal. The need is here - the need is now. We continue our efforts to raise the remaining funds. We thank all those who are supporting this trial and we will continue to provide information on the status of the trial as we progress. Please contact IiME directly if you or your organisation would like to assist or contribute. If anyone would like to ask any questions about the UK rituximab trial then please use the Contact form on the rituximab web site. With this trial we can take a huge leap forward in ME research. Let’s Do Research! Let’s Do It For ME! Invest in ME (Charity Nr. 1114035) www.investinme.org Page 49 of 52
50 Publizr Home