Dr. Maria Gjerpe, an ME patient for 30 years, explains how and why MEandYou are going to crowdfund a Rituximab study.
Will we – the patients, relatives, friends – be the first in the world to crowdfund a clinical trial?
And can we engage both sides of the Atlantic to make it happen?
In 2012, a study at Haukeland Hospital on the use of the immunosuppressive medication Rituximab against ME attracted international attention. Two-thirds of the patients in the study experienced significant improvement after being treated with the drug.
However, with only 30 patients the study was too small to draw definitive conclusions. If the findings are replicated in a bigger study, this might be the most significant breakthrough in ME’s research history.
The scientists at Haukeland applied for support for a larger study of 140 patients through the Research Council of Norway (RCN). In December 2012, the RCN stated that the scientific quality of the application was worthy of support, but they failed to allocate funds for this study in favor of other projects.
Patients reacted with despair and frustration at the prospect of having to wait even longer for answers that could bring the research community closer to effective treatment and knowledge about the underlying mechanisms of ME/CFS.
So could there be other ways to find the necessary funding?
Is it possible to crowdfund a clinical trial? I’m Maria Gjerpe, medical doctor and an ME patient for many years. I was a pilot patient in the Haukeland study. The effect of Rituximab on my health has been profound but it has to be infused regularly to keep me healthy. 80% of patients relapse without the infusions after a certain period of time, according to the Phase 2 study data. This could happen to me too.
I am not going to get any more infusions after my last one on 14 March 2013. I do not know how long I will be well and healthy, and have the energy and capacity that I experience now.
So, with three other board members, I set up an organization, MEandYou, specifically to raise 7 million krone for this 140-patient trial. You can watch a video about MEandYou by clicking on the image below.
To ensure that I can handle this enormous job that I´ve set out to do, together with other people who want to join in, and to be sure that I´m not going to be sick during the crowdfunding campaign, I´ve decided that 90 days is the limit: 90 days to raise the money that can make Phase 3 of the Haukeland study happen.
The campaign has received public support from the Research Council of Norway, and several politicians are supporting the idea of more research on ME/CFS.
Nine days after the launch of MEandYou, we passed the half-million-krone mark ($85,000) and I handed over the funds at Haukeland Hospital.
Hundreds of people have contributed both from Norway and abroad with donations ranging from 20 krone to 100,000 krone (US: $3 to $17000; EU: 2.5 to 13300 euros). There are no expenses in the organization. Everybody works for free. All the money goes directly to Haukeland and the updates on our website show the total amount. If you pay via PayPal, it keeps the transaction fees as low as possible.
How to join in
The crowdfunding campaign ends on 6 June. The power of social media will help us reach patients, relatives, friends and supporters abroad, but this is not enough. We also want to reach the wider community on both sides of the Atlantic, to really get this crowdfunding campaign going.
- We ask you to ask bloggers, forums, journalists and everyone you think would like to be a part of this initiative, to participate. You can download support badges here.
- Share this Phoenix Rising article.
- Share this letter at MEandYou with blogs, patient forums, friends, journalists and others. We are sure people want to be a part of this initiative, if they only get invited.
- This is actually about money, of course. Use our PayPal if you can: – but even more important, invite your friends.
You know what? We can do this together. This clinical trial is too important to stop and we must continue to seek answers in science.
Doctor of Medicine and ME sufferer
Founder and Chairman of the Board of MEandYou
Fluge and Mella’s Rituximab study in PLoS ONE
Newspaper interview with Maria Gjerpe and Prof. Olav Mella
Video of Prime Ministerial Candidate Erna Solberg supporting the campaign