Hello Jackie,
Quote Originally Posted by jackie View Post
With all the debate...does anyone know if there is even a REMOTE possibility that the CME material will be removed, changed re-structured, taking readers wishes into account? Or will it stands as is?

This is such a good thread, (albeit frustrating to all concerned!)...so many have put hours into dissecting the material almost line by line - giving REASONS (and studies and facts) that can be clearly understood, as to the unacceptabilty of the recommendations in many patients opinions...countless others have written of their personal experiences of "discrimination" (that's the only term my brain could come up with! I'm sure there is a better word, a more accurate one....it just FEELS like discrimination when you are repeatedly subjected to these exercise/activity/de-conditioning warnings and recommendations).

So...is the CAA taking any of the concerns seriously?. Is there any hope? What next? I'm perfectly willing to keep repeating MY objections as much as I need to - fears of the potential risks...of the cme material as it now stands (and I did read it several times)...what more can/should we do?

Would it help to post the entire document and examine it line by line (this thread is so long...can't remember if that has already been done? I can hear the collective groans from EVERYONE...on all sides of this "debate"!) or would that be just a WASTE of time (and I can almost hear the emphatic YES'ES! as well) - AND we've already had many excerpts posted.)

Is the CAA re-examining the material as it stands now - based on the "furor" it has caused?

Will the CAA overlook STUDIES they've used to put this doc in place...in favor of changing it to suit a large group of patients, each with their own "take" on the subject?

Will the CAA overlook the cost factor (whatever it is) in changing, deleting or modifying the CME Education course?

IMO..."flogging a dead horse" doesn't apply to the DEBATE that has taken place here (the debating is absolutely necessary imo)...but does it apply to our HOPES that the material will be re-examined, deleted or changed?

What is MY/our responsibility...how far do I go - what more can I do, in demanding a change, concerning what many believe to be at the "core" of future health care protocols, for me/cfs?

What do I owe to myself, and more importabtly, to others even farther down the "scale" than me...as to advocating/fighting for better understanding and the correct treatments...in a world that has failed miserably to do that for "us", to date?

Now what? "After the fact" changes don't work very well....we all know that (but they are better than NO changes)

These are MY questions this morning. j

+1 and - not being an US-citizen also - specifically as to your

With all the debate...does anyone know if there is even a REMOTE possibility that the CME material will be removed, changed re-structured, taking readers wishes into account? Or will it stands as is?

That's also my question (among others) and I fear part of the problem is that there may be - apparent? - loss of face involved and also technical difficulties, slowness of institutions a.s.o.

However... it would seem to me that this thread admirably well - especially summarized as in Kim's selections such as can be found here, for the benefit of all:

Excerpts: Exercise quotes from the Big Talk
-- http://www.forums.aboutmecfs.org/sho...ll=1#post70063

provided the point of view and specifically the experiences and the many excellent reasons and evidence on the basis of which THE PATIENTS WITH ME/CFS reject GET and CBT wholly, as medical therapy in medical literature about ME and as offered to patients with ME/CFS.

If patients' organisations don't pick this up somehow - not just Jennie Spotila on this thread that is, whom I do not blame for anything and who posted many a rational post - they fail as patients' organisations.

But yes... I can understand the relative slowness of the CAA, up to a point, and/though this whole thread, long as it is, and much excellent evidence and arguments it gives, on next Apr 26 runs half a year and numbers some 1555 posts right now.

So in view of the labour done and the evidence of the patients' ideas, values and feelings on line for everyone to see and apply usefully

With all the debate...does anyone know if there is even a REMOTE possibility that the CME material will be removed, changed re-structured, taking readers wishes into account? Or will it stands as is?

is a good question.

Best wishes,

Maarten.