Journal of IiME Volume 4 Issue 1 www.investinme.org patient support groups, meets also in London and now spans across nine countries in Europe. EMEA provides a voice for European patients and is beginning to make its voice heard – and will continue to do so in cooperation with international organisations. Some of the member groups have provided news of what is happening in their countries. EMEA members are announcing new conferences for the later in the year, including a European Tour by Dr David Bell. The abstracts of the conference speakers’ presentations are also included in the Journal. The Invest in ME conference in London in May is our fifth biomedical research conference and now welcomes delegates from eighteen countries. We would like to thank two organizations who have donated funds to enable Invest in ME to carry out this conference. ME STORY When I finally did get a diagnosis it was only through travelling to a GP who had 40 years of clinical experience of M.E. I couldn't get a diagnosis locally. I'm sure the lack of an accurate diagnosis is no news to most people listening. I would, however, like to emphasise that, even after 8 years, when you finally receive a diagnosis it's not much use to you. It is a great relief to have an explanation; and confirmation of what you've been dealing with. However, if every health professional you subsequently meet – be that for acute care in an A & E unit or resources from a wheelchair assessment advisor – if every health professional you meet then doesn't believe in M.E. it's of very little practical value when you seek services. Worse than that, it can actually be detrimental to the service user–service provider relationship to mention that you have this condition. Once the M.E. diagnosis comes up, all the negative responses ensue. The Alison Hunter Memorial Foundation (AHMF) of Australia, set up by the mother of Alison Hunter, has again provided support. - a person with ME ME FACTS UK donor selection guidelines state that people Likewise the Irish ME Trust (IMET) has provided support for the fourth year running. These two organizations have track records of supporting biomedical research into ME and share a common ethos to that of IiME. We are profoundly grateful to these organizations for helping us in this way. To those who attend the conference we hope you enjoy your day and learn a great deal. For those not able to come to the conference then we hope the Journal and the resultant DVD of the conference will provide something of use. Enjoy the Journal, enjoy the conference. Best Wishes Invest in ME Invest in ME (Charity Nr. 1114035) who have previously been diagnosed with CFS/ME are able to donate blood once they have recovered and are feeling well. There is no set timescale for this, and no additional diagnostic tests are carried out before they can donate blood. -UK government Chief Medical Officer May 2010 Canadian Blood Services has accepted blood donations from donors who report a history of CFS but are now well. Donors who are not well may not donate blood. However, …., we are changing the way we manage donors such that any donor who has a medical history of CFS will be indefinitely deferred from donating blood. Once we understand more about this issue, we will revisit this decision to determine whether the indefinite deferral is still warranted - Canadian Blood Services April 2010 Page 7/56

8 Publizr Home

You need flash player to view this online publication