NEDA responds

I am so surprised and pleased to see a fulsome response from NEDA about a recent guest post on Carrie Arnold's blog (I posted a link a few days ago). It is enormously good news that NEDA, the largest ED organization in the US, is responsive to questions and criticism from individuals like this. I applaud them. I better understand NEDA's work after reading that post.

Many people I know have had questions recently for NEDA and feel they were not heard, nor responded to. I am hoping that this is the beginning of a new approach to transparency and collaboration.


  1. The NEDA Toolkit for Parents, and NEDA's discussion of Contributing Factors & Prevention on its website, are both filled with unscientific speculation. Those resources were written several years ago and need to be updated and made evidence-based.

  2. I agree. This has been an issue I've brought up with NEDA for a long time with no success.

  3. Can you list them for us?

  4. On the topic of evidence-based as it relates to the NEDA Toolkit for Parents, I am reading the book Big Data: A Revolution that will transform how we live, work and think. Right now evidence-based more likely than not refers to rather small samples of data from which one might extrapolate a statement that could be called unscientific speculation, as well. Big data will enable researchers to come to more rubust conclusions which seem to be needed by e.g. insurance companies before they agree to extend treatment beyond, say, 30 days. The toolkit undoubtedly needs updating. I would be curious to know if anonymous has prepared a document that would illustrate his(?) her (?) position so that document could be submitted to a NEDA toolkit review committee?


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