I decided to raise $1.2 million (£780,000, €920,000) in 90 days for a clinical trial on a drug for ME/CFS-patients through the crowdfunding campaign MEandYou - and succeeded. For years I´ve been debating the social secure system for long term sick, and the society´s way of looking upon totally normal people, that just happened to become ill. As both a medical doctor and a patient I know a thing or two from both sides. I am usually using my personal blog, www.MariasMetode.no and newspapers, radio and television are also natural arenas, but for this particular MEandYou -campaign I also made a dedicated site. For 90 days I used my insight in how social media inner communication works to involve, engage, trigger and lead people for action. In ninety days, supporters from 49 different countries, almost 4000 likes on Facebook, and lots of supporters in real life, joined the MEandYou.The cause became very visible, inviting everyone to join in. The campaign was packed with only positive vibes. MEandYou got support from stakeholders as the Prime Minister, the whole Norwegian Champions League -and hard rock fans that collected refund bottles to support this clinical trial. Would you imagine those very different people got involved in boring things as research? Well, they did. They understood that it might as well could have been themselves that became ill, their wife or their friends, and wanted to engaged. Why did I do the crowdfunding MEandYou? The basis for judgment and decision making is knowledge and science and trials. The goal was to find a way to fund a confirmatory trial of the effects of the immune drug Rituximab on ME/CFS. Ninety days, because that was the time I could confidently commit to: I, a ME/CFS-patient and a Doctor of Medicine, had gone from bedridden to completely rehabilitated on Rituximab in a pilot study at the Haukeland hospital. At the same time, I knew that 80% of patients relapsed after some months. When I decided to raise this huge amount of money, I also knew that I might only have a short time to do it, before I relapsed, as I couln´t get any more drugs myself. Nevertheless - I also knew that the really sad thing about being sick with ME (CFS), is that you do not have any strength to use in the fight for treatment and research. And I, suddenly had. I had to fight, in a unifying way. I finished MEandYou and continue to debate on MariasMetode. The trial with 144 patients will start in spring 2014. If it confirm the earlier findings, it might be a medical breakthrough for millions of very sick people world wide, whom today is without treatment. Several other patient groups in other countries was inspired to fund science themselves, which is a huge bonus for me to experience.
I’m a Patient Leader