What would you like to see come from Patient Pow... - Fight MPN
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First, let me preface this by expressing appreciation for the commitment and generosity of taking time to educate us. But in response to your question I have the following criticisms. Most presenters say very little of substance but use a lot of words. It's typically 'we have hope, or things look promising.' But if you read the texts of answers, too many are identical in format and contain little if any substance. It's as if presenters won't be honest and either give us the bad news or admit they don't have the answers. So I'd appreciate it if they'd be more forthright. Others have expressed this same concern to me. Thanks.
Thank you for the feedback Katie! Will pass this along to the rest of the team.
Katie: You are so right! We need direct answers that have some meat rather than platitudes. However, I do often ask doctors how they FEEL things are going - asking them to be realistic - but whether they are hopeful, and with good reason. I will take your comment to heart and try to do better. Regards, Andrew
Thank you. And I do, so much, appreciate your hard work and commitment to letting all of us MPNers feel less isolated. You've made it possible for us to easily access the knowledge of the best experts in this field. I nominated you last year for an award for your wonderful work. I love the phrase & it applies here: "you rock!"