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ME and You

(een initiatief van

Maria Gjerpe):

crowd funding voor

grote Rituximab-studie

 

 

 

 


 

 

Maria Gjerpe

 

 

Maria Gjerpe, een Noorse ME-de-patiŽnte die tijdens haar ziekte als arts afstudeerde en

zelf de positieve, maar tijdelijke effecten van Rituximab heeft ervaren,

wil via crowd funding voor 6 juni 2013 bij het publiek 1,2 miljoen dollar werven

voor een grootschalige studie (140 patiŽnten) naar het effect van Rituximab in ME/CVS.

 

Ondanks het excuus van de Noorse overheid aan ME/CVS-patiŽnten,

draagt de Noorse overheid slechts $688,000 bij aan de benodigde $1,8 miljoen.

 

 

Voorlichtingsvideo:

 

 

 

Voor meer informatie over het patiŽnteninitiatief,

klik op onderstaande afbeelding

 

 

 

 


 

Opmerking:

 

Alhoewel ik sterke twijfels heb bij de vraag of Rituximab dť oplossing is voor ME/CVS

(Waarom is het effect slechts tijdelijk? Wat stimuleert de aanmaak van de B-cellen?), geeft

het effect van Rituximab wel de richting aan waarin de oplossing gezocht moet worden:

 

het afweersysteem!

 

 

Rituximab (merknaam: Rituxan) bindt aan de CD20-eiwit dat aanwezig is op B cellen

en schakelt vervolgens die B cellen, hoofdrolspeler in de humorale immuunresponse, uit.

 

 

 

afbeelding: Wikipedia

 

 


 

 

 

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 (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 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.

 

 

For more details contact:

 

Dr Maria Gjerpe

MariaGjerpe(at)gmail.com

 

 

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.

 

Links

 

 

bron:

http://www.meyou.no/press-release-english/