Good morning, Tom,

as I believe it still is overthere in Ireland...

 
 
Quote Originally Posted by tomk View Post
I think it was mainly designed like an issue of CFIDS Chronicle - so designed more for lay readers.

I thought there was some nice, easy-to-read articles, in it.
However, it was spoiled for me by the Peter White piece (there was the odd other little bit I didn't like) and that spoiled that for me, in terms of using it in any way to educate doctors. For example, in 2006, we sent the Canadian Overview to all Irish GPs. In 2008 and 2009 we sent some basic information incl. Ticksheets for the Canadian definition and also for the paediatric definition which was like the Canadian definition to all Irish GPs. We included in it a two page sheet with free information they could order from us (leaflets, booklets, DVDs, books, etc). But because of the Peter White article, there was no way it was going on that list. But, as an aside, as somebody who runs a group, I can understand if they have thousands of copies left, why they might want to use them in some way rather than bin them. I would just give them to patients not doctors.

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,

Maarten.