Jill McLaughlin
Senior Member
- Messages
- 196
There has been talk of this lately, for good reason.
Hold the CFSAC accountable for trying to change the name
to ME/CFS and recoding CFS to ME, which will eliminate
ME as a dx in the US. ME/CFS is NOT a name change or
new name. ME is not new and ALL name change efforts
were to get rid of the demeaning and derogatory CFS,
which this does not do.
Members have said that they are concerned and will
"revisit" it. Then dead silence. No dialogue. The CFSAC
meeting is about a week before the NCHS deadline so
not much time for revisiting.
The CFSAC is a CFS committee. They should not interfere
with "our" illness, which is NOT CFS. Take this to
HHS/Congress etc.
While we're at it, let's hold the Coalition 4 ME/CFS accountable.
They were to a large degree behind the CFSAC motions
as evidenced by the inundation with ME/CFS signs and tee shirts.
They are the masters of PR, though, again, most of the
stakeholders were not there.
And this Coalition 4 ME/CFS, a relatively small group of basically
unelected and un-appointed patients/lay persons took it upon
themselves to make this proposal for a change in federal
policy behind the backs of the majority of the community/
stakeholders. ME is not a fatigue syndrome, the erroneous
assumption upon which the rest is based and carried through.
And if this isn't bad enough, let's hold the CFIDS Association
of America and IACFS/ME accountable. There are major
revisions of ICD codes that have been presented to NCHS
and have been accepted for consideration.
This has a significant impact on the insurance issues,
reimbursement, benefits, etc. And the ICD codes determine
the diagnosis. This will in effect make ME the same as
CFS and no longer a diagnosis in the US other than as
a synonym for CFS. (Yes, they say that this is what the
WHO and other countries have done, but it has made NO
difference or any improvement in recognition or the "CFS"
worldview whatsoever.)
These are our national orgs, and no position? Comment?
Even an explanation? Patients were left trying to figure
this out on their own while under a narrow deadline by
NCHS to be able to make comments or oppose this.
There was a presentation on the code changes at the
IACFS/ME conference. Not even the common courtesy
of a report, other than a mention by Dr. Lapp.
Clearly there has been not even a fleeting thought of
accountability for anything. We had better start
demanding some.
Jill McLaughlin
.
Hold the CFSAC accountable for trying to change the name
to ME/CFS and recoding CFS to ME, which will eliminate
ME as a dx in the US. ME/CFS is NOT a name change or
new name. ME is not new and ALL name change efforts
were to get rid of the demeaning and derogatory CFS,
which this does not do.
Members have said that they are concerned and will
"revisit" it. Then dead silence. No dialogue. The CFSAC
meeting is about a week before the NCHS deadline so
not much time for revisiting.
The CFSAC is a CFS committee. They should not interfere
with "our" illness, which is NOT CFS. Take this to
HHS/Congress etc.
While we're at it, let's hold the Coalition 4 ME/CFS accountable.
They were to a large degree behind the CFSAC motions
as evidenced by the inundation with ME/CFS signs and tee shirts.
They are the masters of PR, though, again, most of the
stakeholders were not there.
And this Coalition 4 ME/CFS, a relatively small group of basically
unelected and un-appointed patients/lay persons took it upon
themselves to make this proposal for a change in federal
policy behind the backs of the majority of the community/
stakeholders. ME is not a fatigue syndrome, the erroneous
assumption upon which the rest is based and carried through.
And if this isn't bad enough, let's hold the CFIDS Association
of America and IACFS/ME accountable. There are major
revisions of ICD codes that have been presented to NCHS
and have been accepted for consideration.
This has a significant impact on the insurance issues,
reimbursement, benefits, etc. And the ICD codes determine
the diagnosis. This will in effect make ME the same as
CFS and no longer a diagnosis in the US other than as
a synonym for CFS. (Yes, they say that this is what the
WHO and other countries have done, but it has made NO
difference or any improvement in recognition or the "CFS"
worldview whatsoever.)
These are our national orgs, and no position? Comment?
Even an explanation? Patients were left trying to figure
this out on their own while under a narrow deadline by
NCHS to be able to make comments or oppose this.
There was a presentation on the code changes at the
IACFS/ME conference. Not even the common courtesy
of a report, other than a mention by Dr. Lapp.
Clearly there has been not even a fleeting thought of
accountability for anything. We had better start
demanding some.
Jill McLaughlin
.