I'm hoping the contract can be stopped. But I also think the worst thing we could do is let them staff that panel without people we trust. Here is the way I see it...
Assuming our efforts don't manage to stop the whole thing from happening, there are two groups of possibilities:
If we don't have a significant number of our own experts involved, the possibilities are:
Case 1: They create something inferior to the CCC. Our illness is a difficult one to truly understand, and I can't see any real chance of people with no experience with it really getting this right.
or Case 2: They create a disaster, with potentially tragic consequences for us and potentially lasting after-effects.
If we stack that panel with as many real ME experts as we can, the possibilities become:
Case 3: They come up with something decent or very similar to the CCC (I don't think this is terribly likely, but I'll list it anyway).
Case 4: They create something inferior to the CCC.
Case 5: They create a bit of a disaster, but there is a lack of consensus in its creation and possibly dissenting opinions on record that would give it less credibility and possibly make it easier to fight. There is also a good chance that with vocal experts involved, the most deeply misguided elements might be kept out. The more of a majority our expert voices have, the more likely the consensus will be in our favor.
If knowledgeable people are involved, the best case outcome becomes a bit better, and the worst case outcome becomes a bit less bad. We might be able to avoid that nightmare scenario we're all most worried about. Either way is probably bad, but which is worse? A panel stacked with our experts, or one without any of them? The first one stinks, but the second one sounds profoundly scary to me.
Obviously the majority of us think it would be best all around if the contract didn't go through, and I think we should continue to try to fight it. But if there's a chance that it's moving forward regardless (and there does seem to be a very good chance that it is), then we need to get as many well-informed people as we can involved with it. That doesn't mean they have to sing its praises. They can be opposed but willing to serve if it comes to that.
The argument is not whether or not the IOM project is a good thing. The argument is whether our experts should be involved with it in case it does go forward despite our protests. Is the risk of the disaster that could be created without their expertise great enough to make it worth supporting their involvement (while still making it clear that we formally object to the project).
I really think that it is. I hope if this moves ahead despite us that the list of participants reads like a who's who at the top of the ME research and treatment field. Why take the chance of anything else? According to the patients affected, one of the biggest problems with the Gulf War Illness version was that the right people weren't involved. We need to learn from that and make darn sure that we have every fighting chance we can.
My two cents.
Assuming our efforts don't manage to stop the whole thing from happening, there are two groups of possibilities:
If we don't have a significant number of our own experts involved, the possibilities are:
Case 1: They create something inferior to the CCC. Our illness is a difficult one to truly understand, and I can't see any real chance of people with no experience with it really getting this right.
or Case 2: They create a disaster, with potentially tragic consequences for us and potentially lasting after-effects.
If we stack that panel with as many real ME experts as we can, the possibilities become:
Case 3: They come up with something decent or very similar to the CCC (I don't think this is terribly likely, but I'll list it anyway).
Case 4: They create something inferior to the CCC.
Case 5: They create a bit of a disaster, but there is a lack of consensus in its creation and possibly dissenting opinions on record that would give it less credibility and possibly make it easier to fight. There is also a good chance that with vocal experts involved, the most deeply misguided elements might be kept out. The more of a majority our expert voices have, the more likely the consensus will be in our favor.
If knowledgeable people are involved, the best case outcome becomes a bit better, and the worst case outcome becomes a bit less bad. We might be able to avoid that nightmare scenario we're all most worried about. Either way is probably bad, but which is worse? A panel stacked with our experts, or one without any of them? The first one stinks, but the second one sounds profoundly scary to me.
Obviously the majority of us think it would be best all around if the contract didn't go through, and I think we should continue to try to fight it. But if there's a chance that it's moving forward regardless (and there does seem to be a very good chance that it is), then we need to get as many well-informed people as we can involved with it. That doesn't mean they have to sing its praises. They can be opposed but willing to serve if it comes to that.
The argument is not whether or not the IOM project is a good thing. The argument is whether our experts should be involved with it in case it does go forward despite our protests. Is the risk of the disaster that could be created without their expertise great enough to make it worth supporting their involvement (while still making it clear that we formally object to the project).
I really think that it is. I hope if this moves ahead despite us that the list of participants reads like a who's who at the top of the ME research and treatment field. Why take the chance of anything else? According to the patients affected, one of the biggest problems with the Gulf War Illness version was that the right people weren't involved. We need to learn from that and make darn sure that we have every fighting chance we can.
My two cents.
