I hope I'm getting this right. According to @
Delia (who has a ton of political advocacy experience), the best political strategy for getting what we want (eventually) is to follow the Experts Letter. Adopt the CCC, which defines ME, but use the name ME/CFS. This is step one.
The reason for this is US docs use CFS, and ME patients (if they even get diagnosed) have a CFS diagnosis under Fukuda. Very few docs know what ME is and very few patients have an ME diagnosis.
So if CFS is in the name, then everyone diagnosed with CFS would be redefined under the CCC. If they meet CCC, they have ME/CFS (which is really ME). If they don't meet CCC, then they get a new diagnosis - ICF (or whatever). So then everyone under the CCC has ME, except it's called ME/CFS.
Also at this point, I think Fukuda and Reeves would have to go away, because they only define CFS and not ME/CFS.
Step two would be to convert ME/CFS to ME. CFS in any form goes away forever. I assume this would be at the next definition review, possibly using the ICC (and hopefully this will be sooner than another 20 years).
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If you adopt the CCC and call it ME right now, then CFS is still in existence to plague us forever.
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Hopefully, Delia can chime in here and confirm or deny my understanding of this.