Good morning, Tom,
as I believe it still is overthere in Ireland...
I am with you Tom, and - as I've said privately to you, and now say again in a bit different fashion: - I wish other countries were as blessed with ME-advocates like you and Orla! The CAA and other patients' organisations should take you and Orla as an example and standard of excellence!
Maybe someone high-up in the CAA could make contact with you, since you are clearly a most capable team with lots of fine ideas and information, and also quite rational and reasonable! It might make it a lot easier for them to get GOOD documentation on line.
O, about the prose and intended audience: I am glad to read it was "designed more for lay readers" - hope you're right (though then I don't understand "clinical.pdf" - but OK: I have a logical hang-up or two ).
And I see what you're saying about having lots of paper copies left... personally, I'd rather say and hand out nothing rather than what contained dangerously false and misleading information, or indeed what contained material very fit to provide Peter D. White with status and acclaim he just shouldn't get, but I am no policy-maker for the CAA, nor a US-citizen, and only state my own preference here.
However, the pdf-material for the website is easily fixed with an Adobe-editor: Load, excise, done, upload over the old one: Shouldn't take more than 5 minutes, plus perhaps another 5 for thinking of a diplomatic line to motivate the excision.
My best wishes and regards to the great Irish team of ME-advocates,