The Invest in ME - Research Pre-Conference Dinner 2016 - Postscript
The pre-conference dinner was a lovely event attended by those invited directly by Invest in ME - Research - to prepare for the conference but also to celebrate Invest in ME's tenth year as a charity.
The pre-conference dinner invitations were to researchers, clinicians and ME patient group representatives from many different countries and is intended to further encourage international collaboration in research into ME.
Norwegian advocate and mother of severely affected ME children - Kjersti Krisner - gave a powerful, emotive and, at times, shocking pre-conference dinner speech which eloquently portrayed the tragedy and loss that is occurring with this disease.
The room was silent as Kjersti showed images of severely affected patients and described how long they had been bed bound.
After the speech Kjersti introduced professional violinists Emanuela Buta and her husband, Carmine Lauri (click here) who played a beautiful rendition with two violins of music by Bach - allowing everyone to reflect on Kjersti's presentation.
The music complemented the speech perfectly. Both of these presentations will be available on the conference DVD - which can be ordered here.
The Invest in ME - Research Victory Awards 2016
As this year we are celebrating our tenth year as a charity then we decided, at the #IIMEC11 pre-conference dinner organised by IiMER, to acknowledge the support of certain people who had been with us from the start – real supporters of Invest in ME - Research and also of the ME community.
In our tenth year we have some grounds to believe that the work of the charity’s supporters is bringing victory to this long campaign to get proper research and recognition to ME.
As our Centre of Excellence for ME proposal is in Norfolk then we wanted to recognise this also in a token of our appreciation for those great supporters.
Of course, we aren’t the wealthiest of charities and use our funds only for research and related activities.
So to replace funds we used symbolism to express our thanks – based on Norfolk (Centre of Excellence) and victory.
Admiral Lord Horatio Nelson was from Norfolk – and Lord Horatio Nelson's flagship at the Battle of Trafalgar in 1805 was HMS Victory.
So we commissioned (actually we just purchased) some chosen, but hand-made, pens which are made from wood salvaged from HMS Victory (authenticated) by a certificate.
Our humble tribute to those helping us attaining a Centre of Excellence for ME in Norfolk – and victory in our campaign to overturn decades of poor research with no strategy – embedded those two themes.
Professor Malcolm Hooper was instrumental in setting up Invest in ME - Research. His talks in 2005 (organised by Kevin Short) led to a radical change in how people understood what was happening behind the scenes. His continued support for IiME through the years (chairing the IIMEC* conferences and the Hooper Interviews) helped us enormously. His continued unselfish work in helping others caring or coping with ME has been very important to so many patients. His written work with the amazing Margaret Williams is a source of invaluable information dating back many years.
The Irish ME Trust have supported Invest in ME - Research conferences from the beginning. They have also been solid partners and friends and founders of the European ME Alliance. Michael O’Reilly and Declan Carroll have been such good friends that their names are hard-written into the conference invitations every year. They perform great work for Ireland and Europe and have helped IiME through good and bad times.
Dr Dan Peterson has never left ME patients. From the Incline Village epidemic through to today he has stayed with the patients, inspiring others and still to this day contributing heavily to make progress in the clinical and research fields. He has also been supporting IiME and the conferences since we first invited him. Simmaron Research are nowadays always offering to sponsor medical students to the IiMEC* conferences and Dan plays a crucial role in the meetings that are taking place. Dr Ian Gibson refers to Dan as “The Pope” of ME. We agree.
And Dr Ian Gibson Invest in ME - Research became a charity at the same time as the Gibson Inquiry – an attempt to bring reason and science and justice to the way ME was treated and researched, despite no funds to do it and no support from the government. Yet he produced a report which contained many recommendations which would resonate today. He has been a good friend and supporter and advisor to Invest in ME - Research from the start. He now chairs the IIMEC* and BRMEC* meetings. He has been instrumental in getting our Centre of Excellence proposal off the grounds and within reach. He has fought with us in meetings with university and hospital and government – always on the side of the ME patients. And he does the same thing for so many other deserving causes – without claiming the limelight or credit for his support and work. There are so many organisations which have been dependent on his unstinting service that we wonder why he has not yet been honoured. His scientific work also deserves credit.
We could add many names to the list of those to whom we should give thanks and we hope we may be in a position to do so in the future.
Invest in ME - Research chairman Kathleen McCall presented these pens to Professor Hooper, Declan Carroll, Dr Dan Peterson and Dr Ian Gibson at our pre-conference dinner.
Thank you all – from all at Invest in ME – Research.