Patient Advocacy

The Problems with Testimonials   "For centuries doctors used leeches and lancets to relieve patients of their blood. They KNEW bloodletting worked. EVERYBODY said it did. When you had a fever and the doctor bled you, you got better. EVERYONE knew of a friend or relative who had been at death’s door until bloodletting cured him. Doctors could recount thousands of successful cases." You can't tell in an individual case what would have happened if nothing was done, or something else - particularly for a condition that has a variable clinical course. For example, most people with COVID survive; and many people with indolent cancers will live without ever needing treatment.  So like the blood-letting example they cannot assert that what they did mattered - or if they would have done well anyway.  - Testimonials can't inform about the number of persons who have used the intervention and did not benefit or were harmed. - Testimonials provide  no denominator - the number of

Karl Schwartz, @Lymphomation  Caregiver and patient advocate Formerly: Patient representative to FDA (ODAC) President of Patients Against Lymphoma CIRB member - adult early phase research NCI Steering Committee, Co-chair NCI Patient Advocate Committee Faculty - AACR/ASCO Methods in Clinical Cancer Research Workshop at Vail   My full advocacy CV Lymphoma simplified Guidelines at Diagnosis   The Problems with Testimonials Reporting Symptoms & Side Effects Red Flags & Free Speech - Identifying bogus information Citizens Petition to FDA to require or urge Quality of Life comparisons in clinical trials <a rel="me" href="https://mastodon.social/@lymphomation">Mastodon</a>

 For the Newly diagnosed This topic is for anyone who has just been diagnosed - or just prior to the diagnostic evaluation.  It is also for caregivers -- loved ones who will help the loved to navigate the diagnosis, treatments, and the related decisions to be made. A lymphoma can be a serious disease, but it is also  effectively treatable even at a very advanced stage. Some types of lymphoma are readily cured, other types can be managed well as needed. The rarer sub types require more attention than most diseases since experience and therefore expertise is less common, so you may need to get more involved with your diagnosis (seeking a second evaluation) and treatment (considering clinical trials) and also seek an expert at a major academic institution to work with your treating physician. For the indolent lymphomas it can be more likely that you will die with the lymphoma than from it. So let's get started on your new study project. Here are the steps we recommend you take as s