SEID isn't perfect but the best thign about it is that it isn't CFS. We need to make a clean break from CFS, completely fresh start. Cut CFS off at the knees and let it rot.
I believe this is once in a generation opportunity to have "our own disease", so to speak. Even if the proposed name isn't perfect, at least it is unique and at least it applies specifically to whatever is making us all ill.
In time I have no doubt that research will identify subsets of our illness, perhaps even completely different illnesses, but the IOM can only say something today if they can fully justify it. They feel unable to fully justify using words like 'immune' or 'endocrine', because of a lack of evidence. I think most people on the IOM committee would fully agree that there are immune problems, etc., but they have to be very careful in what they claim. They are the ones risking their reputations and careers on this, putting their signature on it, and to write something in an IOM report that you can't justify is not advised.
As of today, as the IOM report says, there simply hasn't been enough research done to accurately identify subsets. If it was already possible to easily and accurately identify subsets we wouldn't be having this debate about names now.
It's chicken and egg. Which comes first, the name or the illness? In our case we have to give it a name first, even if imperfect, and then puzzle out what the illness actually is. I would have preferred if it was just left as ME from day one, instead of being given endless different names, but right now I'm willing to accept SEID, though imperfect, just to make a clean break from CFS.
If the IOM recommendations are followed by HHS and other govt. agencies and departments, the whole world will soon know that SEID is a real, physical illness.
I suppose it boils down to this- We can either accept the current horrible situation, with psychobabble and abuse and fatigue and very little research, or we can grasp this new opportunity, this fresh start, and support the IOM recommendations. The IOM are pretty much the highest medical authority in the land, so if they can't help us, nobody can. I'm going to support the IOM report and accept SEID even if it isn't ideal.
Sorry for writing so much in one go, I know it's often impossible for people to read so much, but I only really get one chance at writing something serious then I'm wiped out for days, so I have to just write lots and hope for the best. Sorry people. Take care.