jackie
Senior Member
- Messages
- 591
imo we should NOT have to try and repeatedly convince each other of the objections to the cme. If even a SMALL majority of pwc's strongly objected and gave what they believed were good reasons, shouldn't we back those folks up, to help protect them against possibly enforced "treatments" and make them feel safe? And yet MANY have strongly voiced their opinions that the cme material is NOT "safe" to be presented to doctors that may be treating us! Those of us with what we feel are valid oppositions, have made ourselves perfectly clear....stated all the reasons, given all the statistics/facts we could. Talked again and again of the emotional toll this was taking...wore ourselves down trying to plead the case against.
Here is what I don't understand...removing the material will not HARM individuals who want to and are able (because of their personal level of functioning) to engage in exercise/activity. If they are ABLE, they are probably doing so already...if not, it seems logical they will inquire about the possibilty and a doctor can direct them to specific guidelines that can easily be put in place. BUT...leaving the material as it stands can cause great HARM....there is no way around that fact (especially with an unenlightened doctor)...right? Now I REALLY don't get this. Am I missing something? I'd like an answer...is there ANY possibility that the material will be removed and/or changed? Right away? Where is the open dialogue with the CAA? Are they hearing this debate? I need some feedback. I don't want to keep hearing the same words that I feel are being used to convince me/us that this is right....when so many voices keep saying this is wrong.
OR...has a decision already been made to keep the cme material as it is, in place and available...and we aren't being informed? How do we know that the CAA IS even listening to THESE particular concerns?
Do they know what we want them to do (many of us anyway)? Do they know how we FEEL? How upset and concerned we are? Does what many of us want MATTER? Does the caa not want to take the time and trouble to make a change that people with me/cfs weren't consulted about, in the first place? (Was this material developed with "patient" input...not just studies? Does anyone know the answer?)
No one asked ME if I thought this was a wise move...did "they" ask you, or anyone you know? And now that I DO know about and have read it and have formed an opinion of how I truly believe it would be used (by the doctors I have available to me)...I'm saying I don't think it is. Why is it so difficult to accept that maybe this was not the right material to put out there...a mistake - because the people whose lives may be affected (and changed) by it....SAY it's a mistake?
Are we wasting our breath?
This thought IS terribly dispiriting - as Koan and Justin have already said. I'm so fed up with the arguments and debating that i'd prefer to forget all about this...but now I can't, because every time I go to one of my doctors (and God help me if I'm sent to a NEW one)...I'll wonder if by chance they took the course - read the very information I DON'T want them to read (inaccurate and for me, damaging)...as they are suggesting, ONCE AGAIN, that I exercise. All that's left to me, is to stay the heck away from this thread!
And now I'm finally getting mad. And disgusted, frankly.
Here is what I don't understand...removing the material will not HARM individuals who want to and are able (because of their personal level of functioning) to engage in exercise/activity. If they are ABLE, they are probably doing so already...if not, it seems logical they will inquire about the possibilty and a doctor can direct them to specific guidelines that can easily be put in place. BUT...leaving the material as it stands can cause great HARM....there is no way around that fact (especially with an unenlightened doctor)...right? Now I REALLY don't get this. Am I missing something? I'd like an answer...is there ANY possibility that the material will be removed and/or changed? Right away? Where is the open dialogue with the CAA? Are they hearing this debate? I need some feedback. I don't want to keep hearing the same words that I feel are being used to convince me/us that this is right....when so many voices keep saying this is wrong.
OR...has a decision already been made to keep the cme material as it is, in place and available...and we aren't being informed? How do we know that the CAA IS even listening to THESE particular concerns?
Do they know what we want them to do (many of us anyway)? Do they know how we FEEL? How upset and concerned we are? Does what many of us want MATTER? Does the caa not want to take the time and trouble to make a change that people with me/cfs weren't consulted about, in the first place? (Was this material developed with "patient" input...not just studies? Does anyone know the answer?)
No one asked ME if I thought this was a wise move...did "they" ask you, or anyone you know? And now that I DO know about and have read it and have formed an opinion of how I truly believe it would be used (by the doctors I have available to me)...I'm saying I don't think it is. Why is it so difficult to accept that maybe this was not the right material to put out there...a mistake - because the people whose lives may be affected (and changed) by it....SAY it's a mistake?
Are we wasting our breath?
This thought IS terribly dispiriting - as Koan and Justin have already said. I'm so fed up with the arguments and debating that i'd prefer to forget all about this...but now I can't, because every time I go to one of my doctors (and God help me if I'm sent to a NEW one)...I'll wonder if by chance they took the course - read the very information I DON'T want them to read (inaccurate and for me, damaging)...as they are suggesting, ONCE AGAIN, that I exercise. All that's left to me, is to stay the heck away from this thread!
And now I'm finally getting mad. And disgusted, frankly.