Sorry Shane,

 
 
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Koan my friend,

Stifling free speech... What constitutes stifling? Is it stifling if you create an atmosphere where a large number of people are so exhausted by the lack on constructive action and personal ax grinding that they simply don't think that portions of the forums are worth their limited energy any longer. That the constantly negative and critical energy is crash inducing and live shortening all by itself.

Warning, no one with CFS should be forced to waste critical energy and risk severe and permanent damage associated with repetitive argument syndrome or the real possibility of being misquoted, comments being selectively used out of context, or just attacked! I'm madder than hell. The PR forums should never be recommended to persons with CFS!


The same argument is presented ad nauseam - we get it and we also get that some are going to keep saying we don't until their blue in the face or we leave.

In my opinion (and this is ironic because I fully support the absolute need for a serious revision and careful rewording of recommendations frequently make to CFS patients) for many, 'it' (the forums and the free speech bent) really isn't working any longer. I don't expect those making the most noise to recognize this. Other voices have been crowded out and aside from a few irritants, the loud and proud are creating an echo chamber. I doubt that this distilling of the angriest is working for that group either. Many have tuned them out by leaving. Be angry, use that anger, I get the power in that too but the "How's the CAA Doing?" thread stopped being constructive somewhere around 1000 posts ago. Unless someone has anything truly new to say, it should be summarized and closed.

Koan undoubtedly can speak for herself, but your above in my opinion is mostly just personal opinion and preference. Also, as to your

 

 

Is it stifling if you create an atmosphere where a large number of people are so exhausted by the lack on constructive action and personal ax grinding that they simply don't think that portions of the forums are worth their limited energy any longer. That the constantly negative and critical energy is crash inducing and live shortening all by itself.
(..)
Many have tuned them out by leaving.

Evidence please? There were 900+ members when I joined this forum in January; there are 1699 at the moment I write this, 3 months later.

Also, personally I have nothing going on concerning the CAA, that I can't judge well for lack of information and for lack of US citizenship. However, by now I do start getting more and more amazed that even on this list - since it seems to take more than 1000 posts by persons collectively ill for more than 1000 years (is my safe guess) - the following three points seem EXTREMELY hard to get for some:

1. GET and CBT do no good

_______________AND_____________

2. Cognitive Behavioral Therapy and Graded Exercise Therapy
!!! Are Dangerous !!!


both for for people with ME.


3. It is immoral and unscientific to offer GET or CBT to people with ME as 'medical treatment': it is as pooh-poohing their real condition as is the name 'cfs', and dangerous to anyone with ME who does get personally subjected to this, e.g. through insufficient activity or alertness or daring on the part of patients' organizations.

Maybe we should organize a poll, provided the poll-software allows only one choice per member, in order to find out where the forum stands, in majority, on these 3 issues.

Finally, three points.

1. Personally I am not happy with trick questions and innuendo as mode of argument - though I can apprehend that you are far less of an argumentative type than I am and that 1000 posts concerned with the above three elementary points are a lot of posts, for three such points, in a community of ME-patients, who almost to a man or woman KNOW these points are true in THEIR lifes.

2. As part of the reason that this agreement in these elementary points keeps not being reached seems to me to be that the CAA has material on it site that does not abide by either point (for all manners of reasons, I suppose, one of which was a lack of an outspoken large community of patients with ME, until recently with PR, and another the professional mores of medical people, who can allow a give and take in arguments that is a bit hard to take if you are a patient that has to suffer the muscle aches produced by forced GET and the anger produced by forced CBT).

3. And both happen in England and in Holland, that I both know considerably to a lot better than the US. Also, what you seem to forget in your somewhat irritated plea for peace, silence and locking threads, is that the points discussed are very important; at least in England and Holland GET + CBT are the only thing persons with ME are offered by conventional doctors, that is 99%, while GET is imposed by the Dutch bureaucracy on anyone who they consider a nuisance, as a matter of course, "so as to learn them appropriate work habits before entering a normal working life"; while I also miss in your personal plea for closing a thread of strongly felt physical importance by many the awareness that by 2013, if all goes as awry as the CDC and KCL like, people with ME will automatically and of course get a diagnosis of being somatoformers who may and should be subjected to GET to teach them to work and to CBT to brainwash them that GET is good for them.... or to simply punish anybody "loud and proud" enough to protest this inhumanity of men to men - for punishment, discipling and repression of the socially deviant or unproductive is what GET and CBT in the end ARE really about, for people with ME/CFS: It is not about 'science' - it is about coercing and disciplining, just as in North-Korea and elsewhere where GET and CBT have been socially practised on massive and lethal scales, while being warmly or indifferently regarded by the vast majority of those who hoped or knew it wouldn't be applied to their persons.

Regards,

Maarten.