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annecdata: I grew up with two CF children who are nearly as close as sisters to me. They are both alive, and "healthy", at least five years past what we had e

annecdata: I grew up with two CF children who are nearly as close as sisters to me. They are both alive, and "healthy", at least five years past what we had expected to be the years of their demise, and they show no signs of passing soon - and this is not just limited to them; their CF classes (which do still dwindle in size) are much larger than had been expected. There are many different kinds of CF, but across the board the treatment has improved massively. It's a testament to the advancing field, the strategy of the NHS, and the persistence of the parents and children, that the lifespans predicted (on solid evidence) for these children keep being invalidated and extended.

Ntrails 8y ago
> that the lifespans predicted (on solid evidence) for these children keep being invalidated and extended. My understanding is that they are also cautious in generating such estimates, excluding any non-concrete factors (improvements in healthcare etc) that might be used to modify a purely frequentist estimation given historical data. In general it's probably better to tell a cohort that they've an expected lifetime pessimistically than optimistically?
- Normal_gaussian 8y ago
  Yes. They always couch their estimates with the 'using current methods'. They do a lot of work to play down expectations, especially with respect to the kinds of things that may be seen in the media
- hinkley 8y ago
  It's shitty bedside manner though, and provably harmful. This reminds me of the story a few weeks ago of the hemophiliac kid who got HIV and then spent his whole childhood believing he would never grow up, never find love, never have a life. How many people would just give in and roll over on that sort of news? It's self fulfilling prophecy.