WHAT IS ASSSEM?
We are a group of Spanish healthprofessionals: doctors, nurses, pharmacistsand biologists who have decided to join ourefforts to contribute to the change that wasstarted by researchers. We are interestedand knowldegeable in ME/CFS and havestarted a new group called ASSSEM (Association of Health Workersintersted in ME/CFSwww.asssem.org). This group is differentfrom the Liga SFC (our "sister" groupwww.ligasfc.org), which is apatient advocate group, although some of us are in both associationsas some of us in Liga SFC are also health professionals.We now we also have the help and support of a world-renounimmunologist specialized in ME/CFS and MCS, Dr Pablo Arnold, whoworks out of Barcelona. For now we are working on:
1. XMRV RESEARCH COLLABORATION
We are collaborating with IrsiCaixa (theSpanish retrovirology lab that has found theXMRV in ME/CFS patients and is working onsome amazing immune biomarkers forME/CFS) .We are looking for funds to makeup for their lack of financing caused bythem being denied a large grant from the Spanish Ministry of Health.We are in continuous conversations with IrsiCAixa on the best ways tohelp them.
2.POLITICAL WORK
Catalonia has just had elections and there hasbeen a change in goverment. One of the newkey people in the new team at the Departmentof Health was, for 7 years, the health expert inthe Parliamentary opposition and he promised(in front of the whole Parliament and we have iton video) that "Catalan people with ME/CFS would never be aloneagain". In our new conversations with the new Health DepartmentAdminstration, our ideas are clear: we want financing for the IrsiCaixaresearch project and also we want a new way of seeing CFS/ME (fromthe CBT and antidepressant medication approach they have had up to
now to a medical-scientific approach with proper testing andtreatment), and, especially to rethink the ME/CFS-FMS units whichare now useless "fibro-parkings".
3. LEGAL ACTION
We are taking the first steps towards, if necessary, to sue the SpanishHealth Ministry for the bad shape that patients with Central SensitivitySyndromes are in (ME/CFS, FMS and MCS) and the lack of properpublic health care services. We are just beginning this. For now, weare starting with Catalonia and then we hope to reach all of Spain andwho knows, maybe some day the rest of Europe might want to join insuch type of action. The idea is that this legal action become a publicissue in the press and so it can be talked about, and also talk aboutXMRV, etc.
4. TRAINING
Health workers are not trained about ME/CFS in Spain. They think thatME/CFS is a psychological illness and they prescribe antidepressants,tranquilizes or Lyrica. We, ASSSEM, have written a document (for nowit is only in Spanish, but we are working on the English version), withvery concrete information for the doctor to understand what isME/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 blogwww.asssem.orgto gatherinformation for future reference (regarding patient's views, economicsituation, health care service experiences, etc), information which willbe copiled eventually, we are working on an epidemiological studythrough a questionnaire, a very broad based one, to gather importantinformation regarding ME/CFS and its associated pathologies, likecancer. (The word "cancer" freightens people and if we manage tofind a corrolation between ME/CFS in the statistics with a higherincidence of cancer, we will have taken an important step). Our ideais to, on the basis of the results of the questionnaire, the rates of cancer and the immunological state of the patients who respond, tocarry out an epidemiological study with the objective of publishing itan to use it as evidence in a court of law.
6. Proper testing
We are in negotiations with a private lab in Spainthat might be able to develop, commercially and inan economic manner, the determination of what
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WHAT IS ASSSEM
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| Upload Date: | 02/23/2011 |
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