Naive or co-opted? Its almost always the naive who are co-opted. One of the problems we face as an ME community is political naivety. That includes me. I am learning, but its too slow. All our advocates are learning, but its too slow. To paraphrase a line from a TV show, we are playing checkers, they are playing chess, but we naively think its the same game.
Its impossible to say what most of us think about this, as most of us (the CFS, ME or allied communities) are not involved, and not speaking out. Yet at least some of those are unaware of the issue. Being non-informed or ill-informed leads to inaction. We need to reach people outside the reach of the usual blogs or sites. If we cannot connect to more ME patients, then how are we going to reach those without a vested interest?
We also cannot say what the outcome will be. We can only state the risks. How many in any community downplay or ignore risk? A lot? It will be all right. The government knows what it is doing. They are experts, trust them. These messages are part of what we are facing as advocates.
I started writing a blog that overlaps a little with the blog on Pandora's box, which has now been amended to cite the Pandora blog. Its an opinion piece. I hope to finish in a day or two.
Alex.
I agreed with all your post Alex except the part which said that "We also cannot say what the outcome will be". I personally think that as long as we arent being naive about what will go on, we can in fact say and know what the outcome will be... eg as long as they have more people on the committee who they KNOW are more towards Wessely views of things and poor CFS definitions, the CCC has NO CHANCE at all at being voted for or a good ME/CFS definition before used.
There is a number they can have on that committee in which no matter how dedicated the others are on the committee about changing things for us for the better.. they will be overrun when it comes down to any voting. Things cant change while they have selection biased towards the committee members. They can not be trusted to make things nonbiased
We already know they are biased.. since when does an already biased org suddenly become non biased?? They suddenly dont. Thinking they will and have suddenly changed even if they put some token ones onto that committee to make things look better to us.. believe me they will still be outnumbered, Im sure they would make sure things wouldnt be slewed in directions they dont want going on.
..............
It's fear which is making people bend and not keep standing up with a strong NO.. we as a group must not support this.
Im shocked that even with what happened to the gulf war syndrome group.. that people here believe things will be okay if things go ahead. Its by what happened there, has already been proven it wont. We NEED to learn by the mistake they made and not make the same mistake. I ask all those who have quit and now giving in to this going ahead and not making a strong stand that our community doesnt want this, to ask themselves, how will be different then what when on with the GWS group... they got well and truely screwed by the panel due to the balance of power which got set up on that panel. How is it going to be different for us?
All it does with getting some knowledable ME people on that panel is put them into a position in which it can be later said that WE supported that panel!! and they will be powerless due to lack of numbers to help us at all. Unfortunately the naivity of those with ME/CFS keeps screwing up things for all of us and those who have been around with this illness a lot longer and looking at the politics of it all deeper. I dont blame others for this but its very distressing to me seeing another huge mistake being done due to people are GIVING UP due to fear of that panel.
I said NO NO DONT DO IT.. when our group (whatever its called) supported ME/CFS to be redefined from scratch again as I knew what would happen (this!!).. our org let us down by not playing safe enough due to having too much trust based, instead of pushing for the CCC and now our own community is going to screw us up further as it still has too much trust when things have not changed.
One should never believe things are changed till there is actual proof they have changed, instead as a community we keep on bending to be screwed by them time and time again.
As Alex said, its like playing chess and THEY are the masters, they know our weak points, they know how to get at us. We must STOP looking at just what is happening in the NOW moment but be constantly
looking well ahead at where what we do is going to possibly be affecting us in the future. Are we playing into their hands (gov, insurance companies etc all the ones who want this illness buried) in some way? These are not our friends...
If one looks upon it all in terms of what may go wrong, something which we should be doing when we are dealing with non trustworthy people/places.. our eyes are then often opened to the bigger picture of it all and we will see what may be otherwise missed.