The Coalition 4 ME/CFS made a proposal to NCHS to change the ICD code
for CFS to the same code as ME. They posted an updated FAQ to answer
some questions [http://coalition4mecfs.org/ICDFAQ.html], but serious
questions remain regarding the implications.
It appears that giving them the same code will make CFS the same as ME
for diagnostic purposes. The apparent rational that the coalition gives
for doing so is that this will make CFS disappear and it will change to
ME and the ICC.
Yet it seems that the ME-ICC says the opposite and calls for dropping
CFS or ME/CFS.
Patients have been very confused and concerned. The coalition claims
that doctors/medical professionals were involved in their recommendation
and supported it. If this were true, why wouldn't the drs/professionals
be willing to endorse it publicly or at least help explain it to allay
our concerns?
The coalition said that there was a presentation or session at the IACFS
conference regarding the proposal and coding issues. Why have we heard
nothing about it?
It has been asked repeatedly whether the CFIDS Association of America or
the IACFS support their proposal. Again, this is not at the general
discussion level but has been put up for consideration by NCHS.
There is a deadline fast approaching and it WILL be acted upon one way
or another. Ignoring this should not be an option as it has serious and
far reaching consequences. It would seem reasonable that we should
expect them to have some position or at least opinion.
We've had a complete lack of leadership or transparency. Patients
deserve better than this.
Jill McLaughlin .
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