I'm not yet reassured about your process, Bob. You write, “If people cannot accept any of the proposals, after discussion, and rewording, then they can't be included.” What is the time frame for discussion and rewording?
You also write “even if a point is deleted, it can still be discussed and reinstated if there is consensus.” But if a point has been deleted prior to thorough discussion, how can there be consensus later on reinstating it for purposes of discussion?
So I'm asking for clarification concerning the time frame for discussion and rewording.
I wake this morning (exhausted) to read your post to Mary:
This whole area is a mine-field, and it's not going to be widely accepted that ME and CFS are separated clinically.
I suggest we all focus purely on research recommendations. (i.e. using ICC for research.)
So I propose not including anything that involves separating ME from CFS, for reasons that have discussed throughout this thread, except for research purposes.
The ICC and CCC are both clinical definitions. Must we then be restricted to making suggestions only about Fukuda, the only exclusively research definition we have, and/or to making suggestions about only half of the ICC? Remember that the CCC is now in the IACFS/AC Primer for strictly clinical purposes. Can't I make a suggestion concerning the CCC?
It's all consensual.
There is no time frame.
If I cross something off the list, it's provisional, based on ongoing discussions.
I think I understand where you are coming from Ember.
On the particular issue that you are interested in, I have been fairly quick to cross through some items, because I know from bitter experience, that there is not a consensus on this forum regarding separating CFS from ME in a clinical sense.
From my past experience, I know for an absolute fact, that you will not get a consensus for that suggestion.
I could name a number of members who are completely opposed to a clinical separation, and my
guess is that there would be a very large number.
If you read through the thread that I gave you a link to earlier in this thread, then you'll understand why.
http://forums.phoenixrising.me/inde...erence-between-me-and-cfs-to-the-public.9591/
That's a long thread, so I don't expect you to read it, but I promise you, that if you include a suggestion re clinical separation of CFS and ME, there will be
bitter outrage from a number of members of PR, and very strong opposition.
That doesn't mean that you are wrong and they are right... It's just a deeply held difference of opinion, which every one has different reasons for holding.
If you want to include such a proposal, then it needs to be worded in such a way as not to offend people. And my guess is that you won't be able to. So my suggestion is to avoid clincal recommendations, and just to include research recommendations with regards to name and diagnostic criteria. But that's just my suggestion. You don't have to follow my suggestion.
No, you aren't restricted to making recommendations just for Fukuda... We have already made research recommendations with respect to CCC and ICC... And the CCC are already widely used for research.
I'm not reassured to learn that if I "can't agree with anything that's included, then it won't be included." Perhaps I need to give the issue a little more thought before I'm given such power to overrule. Consensus should come after discussion, not before.
Yes, the process is such that if a member does not agree with an item, then it will not be included.
But obviously, there's got to be an element of trust that no one is going to abuse the process, and that everyone will come to the project with integrity.
Yes, you
do have power to veto, but I know that you will use your judgement with consideration.
And yes, consensus comes after full discussion, however long it takes, as I've made clear.
The process won't end until everybody is happy with the outcome.
But it's an experiment, and it might not work, ultimately.
Remember that no single person can decide what text we include, but every single person has the power of veto and can decide what is not said.
So the end result will be such that you will be happy with what is included, even if you are disappointed that some things were not included.
Ember, this process is not going to be perfect, and it might not be worth our energy in the end.
But if it works, then that would be great. If it doesn't, then it doesn't.
On the particular item that you are interested in, it's a sticking point, but if you can find a way around the sticking point, then that's wonderful. (It's up to you to convince everyone on this thread, and on the forum, that your own suggestion is not offensive to them, and that it should be included.)
Again, I'm asking for some reflection on timelines in order to have an inclusive process. What is the time frame for discussion?
No time frame. Open ended discussion. All contributions are equal, except consensus has to be agreed by all.
You write: "We have to reach a 'consensus' in this project, but that doesn't make it the final word on ME, as far as Phoenix Rising is concerned..."
How many times have I heard on this forum that we can't discuss an issue because we couldn't reach consensus on it in the past? We're willing to maintain that position even in the face of new evidence. A dangerous result is that we become willing only to reinforce our earlier beliefs.
I don't know what you mean here Ember... I don't understand what you are getting at.
Like I said, anything can be raised in this process, and anything can be dismissed. It's a fluid process. I understand that you are struggling to keep up, but that doesn't mean you are left out.
If you want to bring an item back for discussion then please do, at any time.
Please don't feel under pressure, hassled, rushed, left out, or outnumbered.
Every single one of your points will be considered, along with all other contributions.
And you are able to respond to all of our discussions at any time. You don't have to respond immediately.
I wouldn't invest too much of your energy in this Ember, as it might come to nothing.
And it's not yet an 'official' PR thing that we are doing.
Let's just see how it does, while people are still involved.
If you've got a better system for reaching a group decision then please go for it.
I'm only doing this while it works, and while people are on board.