Clearly, there is a great chasm in how people are interpreting the IOM criteria and name. I know that you have read my blog
http://www.meadvocacy.org/iom_seid_analyzed_meadvocacy_org_clarified. It outlines the reason why many of us do not accept the IOM criteria and name.
The pros and cons of the IOM report have been discussed extensively on this forum in recent weeks so I'll not rehearse them again on this thread. I don't think there's a chasm so much as a continuum of opinion, though.
Neilk said:
I, and many others (the majority as per this poll) do not like the name SEID.
The problem with polls on this topic have also been rehearsed. But the issue here is whether pursuing a perfect name risks scuppering the IOM report in toto.
Nielk said:
If your argument that no matter what we do, HHS will never listen to us is true, then why fight for more funding? We all have begged for that in the past three decades. How many CFSAC recommendations have asked for more funding? Why should they listen now?
No, that's not my argument. My argument is that we don't have total control, not that we don't have any influence. I think it's likely that the 50-clinicians letter helped get a good IOM committee and helped raise awareness of the issues to inform the report, as did all the letters and emails that patients sent in. The latter was acknowledged, if memory serves. And that input is reflected in the inclusion of PEM front and centre, among many other things.
You're involved in campaigning for the ME name and CCC/ICC criteria but you can't control the outcome. You don't know what your campaign will result in and you've already got plenty of evidence that pushing for ME/CCC/ICC hasn't worked. Specifically, you've got no guarantee at all that you won't push the US back to CFS/Fukuda. The latter would be disastrous, in my opinion.