My name is Daisy Sanchez-Ziller, I’m a 24-year old soon-to-be nursing student from Vancouver. My sister, Jasmine, has been sick with Myalgic Encephalomyelitis (ME) for almost 9 years now, many of which she has spent bedridden with the illness. As I begin to enter the health field, I have taken on a more scientific interest in the illness, which is why I was compelled to attend the Invest In ME Research Conference held in London on June 2nd, and which I am about to share with you.
London. It wasn’t quite what I had envisioned; there were no leather pants, Mohawks or bandanas. No punk kids skulking in alleys, smoking cigarettes. In fact, it was a far cry from the 80’s scene I had for so long envisioned it to be. Yet, there was something charming and quaint about the small red brick houses, narrow streets, and hackney taxis.
Getting to the Invest in ME Research Conference was a journey in and of itself, and after getting extremely lost in the maze that is the London Underground, I had finally arrived at One George Street, where the conference was being held. What was I expecting? To be honest, I’m not entirely sure. But I certainly was not expecting what I walked in to. I was told this venue was an immense upgrade from Invest in ME’s previous venues - a testament to the increased awareness and funding the organization has been receiving this last year; the venue was positively stunning, with a red carpeted foyer and the main gallery adorned with gold pillars and a hand painted ceiling.
When the conference finally got under way, we were greeted and given the rules of the house. After that, the first speaker to come on was Professor Ian Charles (UK). He spoke mainly of the soon-to-be-completed Quadram Institute, currently being built in the UK, set to open in 2018. Prof. Charles specialises in infectious diseases and microbiomes, and this new institute is set to be a forefront for research in gut biology and health, something very promising that we should all have to look forward to.
Nancy Klimas spoke about the ME/CFS Gene Project she and her team have embarked upon. Here, they are recruiting ME/CFS patients and healthy controls to create what will be the largest genetic database for patients with ME ever done. The study is completely web-based, and participation can be done from one’s own computer at home. The study hopes to find which gene mutations give patients a better or worse chance at certain therapies. They are hoping to get 10,000 participants, to be able acquire reliable results. So, if you haven’t already, definitely go ahead and check out the website to participate and be a part of this potentially revolutionary study!
Professor Olav Mella, Department Director, Oncology, Haukeland University Hospital, University of Bergen, Norway, spoke about his trials involving the use of Rituximab in B-cell depletion therapy to treat patients with ME/CFS. He stumbled across this use of Rituximab while using the drug to treat several Hodgkin’s Lymphoma patients, who also suffered from ME; he found that the therapy treated not only their cancer, but their ME symptoms as well. Haukeland University Hospital has already conducted two studies with Rituximab, Phase I and Phase II, and is currently conducting Phase III, a double blind, placebo controlled intervention study. The first patients started treatment in September 2015, and the study follows patients over a 24-month period. The trial includes 151 patients and will be primarily assessing changes over this time in subjectively measured fatigue, as well as clinical response according to predefined criteria. Changes in physical performance, physical function level, and toxicity will also be measured. The final patient follow-up will be September 2017, so we can expect a publication in 2018.
Also looking at B-cell depletion was Dr Jo Cambridge of UCL, UK. Presenting for her group was Fane Mensah, a PhD student studying the immunology of ME in Dr Cambridge’s group at UCL. Next by way of PhD students, we saw Professor Simon Carding’s students from Quadram Institute Biosciences. Here, their research focused on ME/CFS’s relationship with gut health. I have to say, it was really inspiring to see so many enthusiastic young faces in the research field of ME. It gives a lot of hope that there is a momentum building, and that there is a new wave of research in the ME field, that we hope will yield some long-needed answers.
Unfortunately, the two speakers I was looking most forward to, Professor Warren Tate and Professor Ron Davis, I did not get to see because I had to make a mad dash to the airport. But to briefly sum their work up, Prof. Tate, of the University of Otago, New Zealand, has been doing Precision Medicine, which involves doing a lot of tests on a small number of patients. He has been looking at microRNA and cytokines, looking for links between classes of molecules that will give insight into physiological changes. Prof. Ron Davis, of Stanford University, California, has been leading in the molecular research of the illness to find a biomarker. He is hoping to develop new technologies that are inexpensive and will reduce health costs. I strongly recommend checking him out at Stanford’s Chronic Fatigue Syndrome Research Centre webpage.
All in all, it was a very informative conference. A little heavy on the science, I’m hoping the details of what was presented will come to make more sense as I further my education in the health field. But I can confidently say, that it was really hopeful to see so much potential for what is to come by way of research in the coming years.
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