Journal of IiME Volume 9 Issue 1 May 2015 ME/CFS – Through The Eyes of a Young Researcher Before I start I would like to introduce myself. I am a 24-year-old researcher (student). I am originally from the Netherlands where I completed a Masters degree in Infection and Immunity. I came to work with Dr. Cambridge because we share the same interest in B cells, their development, functioning and relation within diseases. She told me that she was going to work on a project on ME/CFS, a disease I had heard of, but did not know the details from. The only thing I was told was that it is a disease with unknown aetiology with possible involvement of white blood cells called B cells. To learn more about the disease I started reading papers on what was known before I started the research. Quite quickly I came to the conclusion that it really was a difficult disease to talk about with people, not to mention actually being involved in research. So I just told myself, to get involved in the study and that will hopefully clarify the phenomena of the disease (I hope). So we formed our small ME/CFS Research Team with the collaboration of Dr. Saul Berkovitz (Consultant Neurologist, UCLH), Dr. Amolak Bansal (Consultant Immunologist, St Helier Hospital), Dr. Arti Sharma (Research coordinator), Dr. Cambridge and myself. We made a plan of how to collect the samples needed, organized ourselves and solved the many logistic issues for the project in a few very busy months. Fane Mensah University College London The process was relatively straightforward; ME/CFS patients who had been seen and assessed by the two Consultants were invited for an appointment with Dr. Sharma and myself. I saw these appointments as a great opportunity to educate myself and see with my own eyes what ME/CFS really involves. After a few appointments and some formal discussions with patients (and family members) ME/CFS started to make sense to me. Not the scientific immunological or neurological part (which was my main task), but the part of how this disease affects people who used to be healthy (young or old, at the beginning of a career or just in the middle) and now became patients of a disease without a clear diagnostic pattern and no biomedical therapeutic strategy. Before I went into the lab to perform the research with the group, I already knew that I now wanted to explore this rare, but so *affecting disease. Not just to perform B cell analysis in these patients, but also because of my interest in this condition and my wish to really try and understand the disease. Patients (ME/CFS) rely on researchers and doctors to provide them with answers to their questions (something they expect from us), but something that has been often ignored by GPs and even in some cases specialists. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 22 of 57

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