Great News - £200k Pledge to IiME for UK Rituximab Trial!

                             Thanks so much to Invest in ME and all who support their wonderful work.

The following statement is on Invest in ME website (click here)

IiME/UCL Rituximab Clinical Trial Status Update  One Event Can Change Everything September 2013 When Invest in ME announced in June 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. Since these excellent Norwegian researchers came to present at the Invest in ME conferences in 2011 we have followed their progress, and invited them back every year for our BRMEC researchers meetings and IIMEC* conferences. The research work has been 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 has encouraged IiME. The more recent success of the ME and You campaign to raise funds for the Norwegian research has created real hope amongst patients. At the IIMEC7 conference IiME announced our intention to work toward establishing a clinical trial of rituximab in UK [1]. In updates published through July and August IiME has stated that all that is required for the trial to proceed is the funding. In the spirit of cooperation we have stated that support for the trial was welcome and that IiME would acknowledge all such support. Our supporters have risen to the occasion and valiantly supported the IiME/UCL trial with wonderful enthusiasm. 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. We have had a very generous donation of £25,000 from a foundation and this has allowed the funds raised to grow to £59,000 in a very short space of time. We have also had fantastic moral support from a great many. As such, IiME and our supporters have managed to initiate and organise something which many thought was not possible. IiME made it clear from the beginning that we welcomed support for the IiME/UCL clinical trial from other organisations. 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 research pool. This is why we have been keen from the beginning, and since our inception as a charity, to initiate collaboration with other like-minded international charities and organisations, and build collaborations between ME researchers across continents. 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 arranged a specific web site which has been set up to inform on all aspects of the UK rituximab trial. This is at - www.ukrituximabtrial.org and we reiterated the current status [2] We have the facilities available. We have the researchers available. We have the best expertise possible available. We have the means of fundraising for this trial available (see The MATRIX [3] ) and we have a campaign to raise funds We have emphasised that the only remaining element required was funding We have reached this position thanks to the vision, efforts and help from Professor Edwards, Dr Cambridge, UCL and our supporters. Thanks to the amazing efforts of our supporters we have been able to agree already to initiate a preliminary study on B-cells at UCL. Professor Edwards will shortly visit Bergen – a trip arranged by IiME as part of our collaborative attempts to unite researchers and build on experience. We can now announce that IiME have been given a pledge of £200,000 from a foundation to supplement the amount we have raised already. This would bring our rituximab fund to almost £260,000 – that is over two-thirds of the requirement for the clinical trial to proceed. The foundation has two conditions to this pledge That IiME continue to be the lead patient organisation steering this trial That IiME continue to raise funds for the remaining £90,000 that is required for the full trial to proceed  The trustees of IiME have accepted these conditions willingly. We are thankful and grateful for this extraordinarily generous offer from the donating foundation. It is 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, can make a difference. We have communicated this to the UCL team with whom we are working to make this trial a reality. We are now distributing this information to our supporters. There were many who doubted that IiME and our supporters could achieve this. Though we knew this would be a daunting task we have never doubted it was possible. We continue our efforts to raise the remaining funds. To our supporters who have been with us since the beginning and everyone who has contributed in so many ways to this trial we want you to know this is your result. It is what you have achieved. It is what we have achieved together. 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. We continue to welcome support. 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 [4]. A status is available [5]. With this trial we can take a huge leap forward in ME research. If you are also interested in the other research projects that Invest in ME is  organising and/or funding please see our main website and free newsletter [6]. Let’s Do Research! Let’s Do It For ME!Thank You. References: 1 http://www.investinme.org/Rituximab%20news-Aug13%2001.htm 2 http://www.ukrituximabtrial.org/IIMEUKRT%20Summary.htm 3 http://www.ukrituximabtrial.org/IIMEUKRT%20Matrix.htm 4 http://www.ukrituximabtrial.org/IIMEUKRT%20Contact.htm 5 http://www.ukrituximabtrial.org/IIMEUKRT%20Summary.htm 6 http://bit.ly/1f7k9y7  Invest in ME                                            September 2013 Further Reading 1. Invest in ME Research 2. http://www.investinme.org/IIME-Newslet-1309-01%20BRMEC4.htm Support ME Awareness - Invest in ME

September 2013

Professor Jonathan Edwards to Advise IIME on Rituximab Study!

Announcement by Invest in ME: Invest in ME have been working on the possibilities of initiating a UK clinical trial using rituximab to treat ME patients following on from our Biomedical Research into ME Collaborative Meeting (BRMEC) on 30th May 2013 and the 8th Invest in ME conference IIMEC8) on 31st May 2013. At these meetings Professor Olav Mella and Dr Øystein Fluge presented further evidence of the efficacy of rituximab in the treatment of ME patients in Norway and it became clear that a similar trial is needed in the UK to benefit UK ME patients as well as provide support for the international efforts in finding treatments for ME. We are pleased to announce that Professor Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL), has agreed to advise the charity on all aspects of a UK rituximab trial. Professor Edwards was responsible for both the phase I and the proof of concept phase II (NEJM 2004) studies in rheumatoid arthritis , which formally established the validity of B cell depletion in autoimmune disorders. It all started with a paper called ‘Do self-perpetuating B lymphocytes drive human autoimmune disease?’  published in Immunology in 1999 [1]. There is no other expert in the UK who is better placed than Professor Edwards in advising the charity in setting up a rituximab trial to benefit ME patients. A plan is being formulated and Professor Edwards and the charity are involved in discussions to establish feasibility and suitable siting for the project. At our BRMEC and IIMEC8 conference meetings we discussed with the Norwegian researchers (Fluge and Mella) about cooperation on this and other projects and we will be setting up further meetings now that this plan is being progressed. A great deal of work necessarily needs to be made, not least of which will be a huge effort by the charity and its supporters to raise the funding. The charity has a number of pledges and offers of support and we will continue to develop more – raising the profile of this project and raising awareness of ME. We welcome your support. 1. Edwards JC, Cambridge G, Abrahams VM. Do self-perpetuating B lymphocytes drive human autoimmune disease? Immunology. 1999;97:188–196. [PMC free article] [PubMed]  Click here to see the above on Invest in ME website and all options to donate to this important clinical treatment trial. The Let's do it for ME team are really excited about this announcement and would like to congratulate Invest in ME on snagging the best man for the job!  We are immensely grateful to Professor Edwards for his interest and help.  Let's get this trial funded!