Journal of IiME Volume 4 Issue 1 www.investinme.org Around Europe – European ME Alliance d- We have written and published a book on living with ME from one person's viewpoint. The book was published by Spain's largest publishing house, Planeta. The book has gone on tour with the documentary. The media has covered this book extensively. e- We have written and published an 18 page social science article criticising the use of CBT in ME. The article was published in a major Spanish psychiatry magazine. The article consisted of a bibliographical review of all the research that has been performed proving that CBT is either useless or harmful for ME and of our own qualitative research with Spanish patients on their experiences with CBT. This article was also distributed digitally extensively and it has had much impact. As a result, the main hospital in Spain that treats ME (well, treats would be an overstatement for what they do...they diagnose), Hospital Clinic in Barcelona, is rethinking their CBT treatment. f- Upkeep of our website www.ligasfc.org: no small feat because of the heavy traffic it has and the amount of hackers who are determined to knock it down. Every day we receive about 100 emails mostly of patients who are caught in the medical or legal ME pilgrimage. We give the information, encourage contacts with their local associations, and give support. gInforming of ME information, research, events, news, etc through our web which is linked to hundreds of Spanish webs and blogs 2. RESEARCH INVOLVEMENT a. In November 2009, we met with the top retroviral research team in Spain (Dr Clotet's team at the IrsiCAixa lab) that worked solely on HIV and persuaded them to start an XMRV research project. It has taken a lot of work! But it is now underway. Dr Judy Mikovits is working closely with Clotet's team and in April 2010 she spent a week working with them on the lab. We have worked closely with doctors and patients on this research and on the blood bank issue. b. We organized a lecture by Dr Mikovits in Barcelona c. We are fundraising for the study: campaign, a concert, etc. d. We are educating and giving talks about the XMRV and the research and taking much flack Invest in ME (Charity Nr. 1114035) for it (which takes up energy and time). We are very excited and hopeful about this research. Dr Mikovits said she was very impressed by the high level of competence of the research team which has been one of the leading retrovirus research team in the world since the mid 1980s. 3. POLITICAL WORK a. We continue our political work in the follow up of the Resolution 203/VIII, passed unanimously by the Catalan Parliament on May 21, 2008 to create ME/CFS-FMS treatment units in Catalonia. The Department of Health (Ministry) is, of course, trying all possible tricks in order not to carry out the Resolution, so we work very hard in the Resolution Follow-Up Commission, researching the "progress" of the implantation of the Resolution in each region of Catalonia. We have written massive reports with details provided to us by patients, health workers, etc. This Resolution is the result of two years of major work: writing legislation, meeting with politicians, gathering 150,000 signatures (Catalonia has a population of 7 million), meeting with leading Catalan figures to get their support, etc. b. We have researched and written a report on the type of training that the Catalan government is giving doctors and nurses. This training is outrageous, attempting to say that ME is actually a mild form of fibromyalgia and that it has psychological aetiology. The report was presented with a PowerPoint presentation at the Parliament's Health Commission in the fall of 2009. The report was distributed by our web massively both in Spanish and in Catalan. 4. ALLIANCES a. We work in alliance with the other Central Sensitivity Syndrome patients' associations: fibromyalgia and MCS. We have been involved in major initiatives in Spain concerning the recognition of MCS and education regarding toxics and Environmental Control. b. We give presentations to groups such as health rights coalitions, universities, nursing congresses, etc on ME and the issues around it. 5. MAY 12, 2010 - we are doing, for this May 12, a campaign, in collaboration with No Fun (the MCS-ME must Page 38/56

39 Publizr Home

You need flash player to view this online publication