WHAT IS ASSSEM?

We are a group of Spanish health professionals: doctors, nurses, pharmacists and biologists who have decided to join our efforts to contribute to the change that was started by researchers. We are interested and knowldegeable in ME/CFS and have started a new group called ASSSEM (Association of Health Workers intersted in ME/CFS www.asssem.org ). This group is different from the Liga SFC (our "sister" group www.ligasfc.org ), which is a patient advocate group, although some of us are in both associations as some of us in Liga SFC are also health professionals. We now we also have the help and support of a world-renoun immunologist specialized in ME/CFS and MCS, Dr Pablo Arnold, who works out of Barcelona. For now we are working on: 1. XMRV RESEARCH COLLABORATION We are collaborating with IrsiCaixa (the Spanish retrovirology lab that has found the XMRV in ME/CFS patients and is working on some amazing immune biomarkers for ME/CFS) .We are looking for funds to make up for their lack of financing caused by them being denied a large grant from the Spanish Ministry of Health. We are in continuous conversations with IrsiCAixa on the best ways to help them. 2.POLITICAL WORK

Catalonia has just had elections and there has been a change in goverment. One of the new key people in the new team at the Department of Health was, for 7 years, the health expert in the Parliamentary opposition and he promised (in front of the whole Parliament and we have it on video) that "Catalan people with ME/CFS would never be alone again". In our new conversations with the new Health Department Adminstration, our ideas are clear: we want financing for the IrsiCaixa research project and also we want a new way of seeing CFS/ME (from the CBT and antidepressant medication approach they have had up to

now to a medical-scientific approach with proper testing and treatment), and, especially to rethink the ME/CFS-FMS units which are now useless "fibro-parkings". 3. LEGAL ACTION We are taking the first steps towards, if necessary, to sue the Spanish Health Ministry for the bad shape that patients with Central Sensitivity Syndromes are in (ME/CFS, FMS and MCS) and the lack of proper public health care services. We are just beginning this. For now, we are starting with Catalonia and then we hope to reach all of Spain and who knows, maybe some day the rest of Europe might want to join in such type of action. The idea is that this legal action become a public issue in the press and so it can be talked about, and also talk about XMRV, etc. 4. TRAINING Health workers are not trained about ME/CFS in Spain. They think that ME/CFS is a psychological illness and they prescribe antidepressants, tranquilizes or Lyrica. We, ASSSEM, have written a document (for now it is only in Spanish, but we are working on the English version), with very concrete information for the doctor to understand what is ME/CFS, how to diagnose and the options that there are in treatment. We are doing talks, courses and presentations for health workers. 5. RESEARCH Besides doing weekly polls on our blog www.asssem.org to gather information for future reference (regarding patient's views, economic situation, health care service experiences, etc), information which will be copiled eventually, we are working on an epidemiological study through a questionnaire, a very broad based one, to gather important information regarding ME/CFS and its associated pathologies, like cancer. (The word "cancer" freightens people and if we manage to find a corrolation between ME/CFS in the statistics with a higher incidence of cancer, we will have taken an important step). Our idea is to, on the basis of the results of the questionnaire, the rates of cancer and the immunological state of the patients who respond, to carry out an epidemiological study with the objective of publishing it an to use it as evidence in a court of law. 6. Proper testing We are in negotiations with a private lab in Spain that might be able to develop, commercially and in an economic manner, the determination of what

we think might be the first biomarkers for ME/CFS (high levels of CD5s in CD8s and low levels of CD57 in NKs as determined by the IrsiCAixa study) to be able to back up what has been published by IrsiCaixa (they told us that they could not do this type of testing for the general public). Of course, it would be better to look for XMRV, but this is more expensive and only IrsiCaixa is able to do it. As you might know already, the other Spanish research labs only do PCRs for XMRV...which, of course, it is useless: you cannot find the XMRV with a PCR. 7. Day to day support and information to health workers and patients Through our web www.asssem.org , we keep Spanish ME/CFS associations and health professionals informed of issues regarding ME/CFS both nationally and internationally. We answer questions, complaints or simply, listen to patients' stories and give them support and encouragement. The ASSSEM team.

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