Maria Gjerpe is her name. She is a medical doctor and a patient. I met her last week on the internet where we both was interviewed on a internet TV show regarding social media and social business. She made such a great impression on me that I decided to publish her story on my blog. Here it is, in the form of her own press release:
Sick doctor tries to crowdfund clinical trial on ME in 90 days of health before experimental drug wears off
MEDIA RELEASE 2 APRIL 2013
A doctor in Norway, given an estimated 90-day window of good health by experimental use of a cancer drug for her severe ME/CFS, has started a campaign to raise money for a larger clinical trial of the treatment before she becomes bedridden again.
Dr Maria Gjerpe’s MEandYou association (www.meyou.no) aims to crowdfund the remaining $1.2 million needed for a 140-patient trial of Rituximab at Haukeland Hospital in Bergen, Norway, by 6 June.
Dr Gjerpe, 45, received Rituximab in a pilot study, going from bedridden to feeling completely well in six months, after 30 years of illness. She said, ‘Rituximab has to be infused regularly to keep me healthy and I’ve had my last dose. 80% of the 30 patients in the pilot trial got sick again without it. Cancer and autoimmune disease patients get Rituximab every three to six months to maintain their healthy condition. I know that my time being well is limited, and I’m using all my regained health to make sure the science continues.’
Rituximab was discovered accidentally as a potential treatment for ME when cancer specialists Drs Ǿystein Fluge and Olav Mella used it to treat cancer in an ME patient at Haukeland Hospital and saw her ME symptoms also completely resolve, before she again relapsed. The three next ME patients whose cancer was treated with Rituximab showed the same pattern.
Drs Fluge and Mella set up a placebo-controlled pilot study of 30 patients, and, after two-thirds of treated patients responding, they plan a 140-patient trial to confirm the findings and determine a dosing schedule of Rituximab that would maintain patients’ improved health.
The Norwegian government have provided only $688,000 of the $1.8 million needed and Dr Gjerpe’s association has so far raised $120,000 in 26 days, from donations from hundreds of people all over the world. ‘I’m working 12 hours a day to fundraise while my health lasts,’ Maria says.
Gjerpe is appealing to patients and their supporters all over the world to join the campaign and fund the trial. ‘This is actually a battle against the clock,’ she says. ‘I’ve told other patients to use me now, the fundraising tools I´ve made, while I am healthy. I might not be here in 4 months.’
ME is accepted by the World Health Organisation as a neuro-immune disease and yet no immune therapy is available to patients. ‘A successful, large-scale trial of Rituximab would have an enormous impact on how the disease is perceived and a huge knock-on effect on research,’ said Dr Gjerpe. ‘It could be a major breakthrough and change-maker in this field, showing in what direction to look for treatment.’
ME affects 1 million people in the US and an estimated 17 million worldwide. 25% are bedbound or housebound and many are children. Symptoms include disabling exhaustion following trivial effort, ‘flu-like malaise, pain, and problems with concentration and memory. About 70% of cases follow an acute viral infection.
For more details contact:
Dr Maria Gjerpe
About Dr Maria Gjerpe
Dr Gjerpe lives in Oslo, Norway. She became ill with ME in 1984. Despite being confined to bed for 21 hours a day for longer periods of time, she studied medicine and qualified as a doctor in 2005.
· MEandYou website (English): http://www.meyou.no/this-is/
· Photo of Dr Maria Gjerpe: http://mariasmetode.no/meandyou/
· Photo of Dr Maria Gjerpe giving money raised after nine days to Drs Fluge and Mella: http://www.helse-bergen.no/aktuelt/nyheter/Sider/140-pasientar-7-millionar-kroner-90-dagar.aspx
· Journal article on pilot study of Rituximab: http://www.plosone.org/article/info:doi/10.1371/journal.pone.0026358
· MEandYou on Facebook: https://www.facebook.com/MEYOU.no
· MEandYou on YouTube: https://www.youtube.com/user/140MEandYou
· MEandYou on Twitter: https://twitter.com/MEandYouFund
· MEandYou Website: http://www.meyou.no/