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 Gjerpeís MEandYou association
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 Oystein 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 Gjerpeís association has so far raised $120,000 in 26 days,
from donations from hundreds of people all over the world.
'Iím 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.í
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.