PATIENTS RESEARCH THEIR OWN ILLNESSES

Some patients are participating with their own voice and thought in essays with experimental drugs. They have created Patient movement 2.0 and online community fórums like PatientsLikeMe, where biomedical research are treated in free and collaborative form. The patient N.N. refers via online that in 2008 she introduced in her stomach 150 mg of lithium dissolved in water by means of a tube in order to slow the progression of her Lateral Sclerosis Amiotrophic (ALS). Although she achieved adequate concentrations of lithium in her blood, she stopped its administration because it put her nervous and because other patients said that lithium seemed not to work in ALS, feeling the necessity to experience with informal medications (off-label) and other alternative ones.

Although the research reported in PatientsLikeMe were carried out in real time, not blind and without controls, some scientists (Richard Bedlack/Duke University), say that there is not substitute for randomized, double blind and controlled by placebos essays. Bedlack, has created a system (ALSUntangled), monitored by an international team of scientists that investigate new treatments at request of the own patients. The data are collected, revised, and discoveries are published in online, peer reviewed and of free disposition articles. (Lateral Amyotrophic Sclerosis).

PACIENTES INVESTIGAN SUS PROPIAS ENFERMEDADES

Algunos pacientes están participando con voz y pensamiento propio en ensayos con medicamentos experimentales. Han creado el movimiento Paciente 2.0 y fórums comunitarios online como PatientsLikeMe, donde se aspectan investigaciones biomédicas en forma libre y colaborativa. La paciente N.N. refiere via online que el 2008 introdujo en su estomago 150 mg de litio disuelto en agua mediante una sonda a fin de enlentecer la progresión de su Esclerosis Lateral Amiotrofica (ALS). Aunque logró concentraciones aceptables de litio en su sangre, abandonó su administración porque la ponía nerviosa y porque otros pacientes opinaban que el litio parecia no funcionar en la ALS, sintiendo la necesidad de experimentar con medicamentos informales (off-label) y otros alternativos.

Aunque los ensayos reportados en PatientsLikeMe se realizan en tiempo real, son abiertos y no ciegos,algunos científicos (Richard Bedlack/Duke University), opinan que no hay sustituto para ensayos randomizados, doble ciego y controlados por placebos. Bedlack, ha creado un sistema (ALSUntangled), monitorizado por una red internacional de científicos que investigan nuevos tratamientos a petición de los propios pacientes, donde se revisa, se colecta informacion y se publican los hallazgos en artículos online, peer-reviewed de libre disposición. (Amyotrophic Lateral Sclerosis).