Esta fundación fué creada por Maria Gjerpe, una doctora enferma con SFC (que recibió tratamiento con Rituximab y mejoró) que, ante la falta de financiación gubernamental, se propuso conseguir 7 millones de NOK para la investigación que llevan a cabo los doctores Fluge y Mella para el tratamiento del SFC con Rituximab, a base de todo tipo de actividades (mercadillos, donaciones de espónsors...) y del crowdfunding. Hasta ahora, en 90 días ha conseguido aproximadamente unos 2 millones y medio de Coronas, pero ahora ha conseguido algo más importante:
El gobierno noruego ha incluído finalmente, dentro de los candidatos a recibir finaciación pública, el estudio titulado "B-lymphocyte depletion with Rituximab induction and maintenance in CFS/ME. A multicenter, randomized, double blind, placebo-controlled study" (Depleción de linfocitos B inducida por el Rituximab y su mantenimiento en SFC/EM. Un estudio multicentro, aleatorio, doble-ciego contra placebo) . Este estudio pretende ver si se consolidan los hallazgos anteriores. Se ofrecen 40 millones de NOK a repartir entre 10 proyectos. Para este proyecto en concreto, se ha solicitado el máximo que permitía la convocatoria: 10 millones.
Aunque los doctores estimaron que necesitan unos 22 millones para el estudio, con la cantidad conseguida hasta ahora ya se ven capaces de iniciarlo.
Estamos de enhorabuena, porque estamos hablando de un estudio en fase III: 140 pacientes, de los que 70 recibirán Rituximab y los otros 70 recibirán un placebo durante dos años. Es decir, se trata de un estudio largo y concienzudo.
Por supuesto, el trabajo de Maria Gjerpe y de la fundación ME&YOU sigue adelante, porque hace falta casi el doble de lo recibido, así que si alguien se anima a contribuir, ya sabe.
Por cierto, también ha conseguido financiación un estudio sobre el Síndrome de Intestino Irritable que, puesto que también afecta a muchos enfermos de SFC, podemos decir que estamos de doble enhorabuena...
Aquí tenéis lo que ha escrito Maria Gjerpe en su blog (la parte en inglés, claro...)
enlace: http://mariasmetode.no/2013/06/forsknin ... cil-today/" onclick="window.open(this.href);return false;Hooray! Good news! It has been granted funding from the Research Council to the 3-phase study at Haukeland hospital today! This is a study to examine whether the results from previous studies are consistent. In previous studies, the researchers Dr. Fluge and Dr. Mella at cancer ward, Haukeland Hospital found that 67% of ME patients had a good or moderately good effect of immune drug Rituximab. We may face a medical breakthrough. Such findings have never been made in this field.
It is not yet announced how much funding department at Haukeland hospital is assigned. At the site of The Research Council we can read that it is allocated NOK 40 million in 10 projects.
Through MEandYou I have collected which will end at roughly 2.5 million kroner ( USD 430500/ GBP279400/ EUR 328800) in 90 days through social media and through a tremendous commitment worldwide. It’s good to see that funding health authorities can no longer watch the sick, their friends, relatives and supporters provides its benefits and savings to fund research on their own disease.
All the money you have given, goes to Haukeland hospital and the scientists, no matter the outcome of the provisions taken by the Research Council and the sum given. I have great respect for all of you who has given of your savings or insurance to ensure their further research into ME at Haukeland Hospital, and has long since established a contract with Haukeland, so that you can be completely safe. How to use your money.
I spoke with Professor Mella today. The funding given from the council will not be ready before January. With the funding from MEandYou, they are able to start right now. Actually they need more funding than they receive from the Council. Mella has earlier stated that they need NOK 22 millions, but the maximum sum to apply for at the Council, is 10 million. Those of you who wants to continue donate to Haukeland through MEandYou, do so. I also hope that those organizations that has fundraised for Haukeland actually also transfere the money to the scientist now.
This could be the beginning of a shift in the understanding of what ME is, how the disease should be treated and how it can be diagnosed. This could be the beginning of a greater prestige for the researcher in the field, which will recruit talented scientists, which in turn will lead to good quality research – and not least, we will do findings that can actually help patients.
This will again stop the eternal round dance of stigmatization of the sick patients, either the dillutions from other that the patients are imaginary sick, or that they have a fashionable diagnosis. This could mean that sufferers worldwide can get the right treatment they need and are entitled to have.
Today we celebrate. We will be celebrating for a long time.
Congratulations, everyone, who has helped to raise the need for research into ME so high and injustice done so visible, that today we see the results of our work.
I´m proud to be a Knowledge Activists!