Isn't it awful how much ambiguity there is with CFS? This causes so much controversy. The controversy over CAA and what they are and aren't doing. The controversy between clinicians. The controversy with patients against Reed and Wesseley. Controversy over lack of government funding, not to mention past misspent funds.
But it bothers me that we also have so much controversy between us patients. I know it is unavoidable, given the ambiguity right now. So much is still unknown that it causes patients to argue over what they have concluded and about proposed treatment. If only it were like diabetes and the answers of treatment and cause were clear. Oh, and then there is the controversy over name, even among patients and who has what.
I watched the "How is CAA doing" thread. And I watched the thread about Kurt's editorial. While I think some of the discussion was interesting, enlightening, and also addressed some important issues, some of it was quibbling over minor details, in my opinion. I should also note that some of the complaints raised did cause positive changes with CAA.
But I don't know if the time and mental energy I have is best used to form well-thought-out arguments on what are really minor issues for which there is no hard and fast evidence, in my view. Not saying all the issues on those threads are minor. Just saying some of it went that way. And what is minor is in the mind of the beholder, I realize.
I want to see the discussion here. I especially appreciate those who find the latest news and let us know. I think the latter is a productive use of time and energy.
But I think the back and forth in arguing among ourselves over some minor points is not as effective a use of my time (only speaking for myself) as other pursuits, such as advocacy.
Some have complained they can't get us CFSers to participate in advocacy efforts. Well, I have made a personal commitment that unless I disagree with the advocacy proposed, or it costs me money I don't have, I will support it.
To that end, I got an e-mail about writing a comment about the DSM-5 proposed changes. I was asked to do this, and I did, in keeping with my person commitment to use my energy and time this way instead of arguing with fellow CFSers over minor issues.
I also have decided to do the sock thing. I don't think it is the greatest idea. But I am not opposed to it. So I will support it.
Absent CAA taking a leadership role in public awareness, I also have a plan for a public awareness campaign I plan to do that does not require anyone else to help me. Cost no money. And will use the time and energy I already spend on the computer posting opinions on the continuous controversies here.
I challenge everyone to step back and look at the big picture. Analyze how you spend your time and energy and what it produces.
Tina
But it bothers me that we also have so much controversy between us patients. I know it is unavoidable, given the ambiguity right now. So much is still unknown that it causes patients to argue over what they have concluded and about proposed treatment. If only it were like diabetes and the answers of treatment and cause were clear. Oh, and then there is the controversy over name, even among patients and who has what.
I watched the "How is CAA doing" thread. And I watched the thread about Kurt's editorial. While I think some of the discussion was interesting, enlightening, and also addressed some important issues, some of it was quibbling over minor details, in my opinion. I should also note that some of the complaints raised did cause positive changes with CAA.
But I don't know if the time and mental energy I have is best used to form well-thought-out arguments on what are really minor issues for which there is no hard and fast evidence, in my view. Not saying all the issues on those threads are minor. Just saying some of it went that way. And what is minor is in the mind of the beholder, I realize.
I want to see the discussion here. I especially appreciate those who find the latest news and let us know. I think the latter is a productive use of time and energy.
But I think the back and forth in arguing among ourselves over some minor points is not as effective a use of my time (only speaking for myself) as other pursuits, such as advocacy.
Some have complained they can't get us CFSers to participate in advocacy efforts. Well, I have made a personal commitment that unless I disagree with the advocacy proposed, or it costs me money I don't have, I will support it.
To that end, I got an e-mail about writing a comment about the DSM-5 proposed changes. I was asked to do this, and I did, in keeping with my person commitment to use my energy and time this way instead of arguing with fellow CFSers over minor issues.
I also have decided to do the sock thing. I don't think it is the greatest idea. But I am not opposed to it. So I will support it.
Absent CAA taking a leadership role in public awareness, I also have a plan for a public awareness campaign I plan to do that does not require anyone else to help me. Cost no money. And will use the time and energy I already spend on the computer posting opinions on the continuous controversies here.
I challenge everyone to step back and look at the big picture. Analyze how you spend your time and energy and what it produces.
Tina