Jill McLaughlin
Senior Member
- Messages
- 196
The US government has coded CFS correctly. The WHO codes CFS to
ME and some other counties have done the same. Like Dr. Phil says,
how's that working for ya? Has anything changed? Any improvement
in recognition or acceptance? Guess we could say no. So let's do
what hasn't worked and expect a different result. What is
this called?
Other countries can and do use different definitions or meanings.
This is what clinical modifications are for. The US has coded
them accurately. CFS is a symptom syndrome.
What was disconcerting is that the Coalition 4 ME/CFS posted
proposals, announcements, FAQ's, letters etc that said that the
purpose was to reclassify CFS as neurological.
http://coalition4mecfs.org/
Only on the NCHS agenda write up did we find out that it was
to code it to ME.
http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf
Their premise to begin with is flawed and confusing.
Mike Munoz, a member of the Coalition 4 ME/CFS steering
committee, stated: The goal of this proposal ... is to ensure
alignment with the best current case definition for CFS, which
includes both viral and bacterial triggers.
What CFS case definition includes viral or bacterial triggers?
What is the "best case definition" for CFS upon which they
wish to base said alignment? Their proposed code change
does not align with the case definition as none of the CFS
definitions define or describe what would be considered
to be a neurological illness.
This coalition can represent CFS and reclassify it but should
not interfere with other illnesses, nor should the CFSAC.
These same groups/people have orchestrated this
ME=CFS=ME/CFS agenda for months and keep promoting
and advertising it.
ME can be diagnosed and is a stand alone diagnosis. ME is
not a fatigue syndrome. ME/CFS is an amalgam and does
not really exist as a diagnosis. There is no ICD code or
classification. It was a term used in the Canadian definition
which is really a mix of both, but has no official acceptance
and is still used to mean different things.
ME/CFS implies they are the same illness, which they are
not. Most CFS definitions would exclude ME. So if X excludes
Y, then talking about X/Y, X/Y research etc. makes no sense
logically let alone scientifically. And we lament and blame
doctors, journalists etc when they don't get it?
This proposal and presentation to NCHS was all done behind
the backs of most patients and stakeholders, ME patients in
particular. This Coalition 4 ME/CFS is really a few State,
online and even local support groups, certainly not
representing many people in total. Were there any doctors
or professionals involved in this proposal? Why wouldn't
they admit it?
The Coalition 4 ME/CFS then said they were presenting their
proposal at the IACFS conference for input - AFTER it have been
presented to NCHS and was up for consideration. Perhaps it
would have been nice to ask for feedback or input BEFORE it
was done. This has been in the works for months as some
documents were dated July. And we have still had no report
or information from this conference presentation or session.
We were simply blindsided by this and trying to understand the
implications. And still no word from the CFIDS Association
or IACFS/ME. This is a change on the federal level and impacts
diagnosis, benefits, reimbursement etc. Yet our national professional
and patient orgs have no position? Opinion? Comment? Even
some explanation would have been helpful. But dead silence.
This proposal would deprive ME patients of their rightful
diagnosis by keeping it officially as and connected to
CFS. ME patients need to be properly diagnosed with ME,
not permanently and officially thrown into the CFS fatigue
wastebasket. Too many ME patients have been harmed
or even died, beyond the actual illness, but from the
CFS misdiagnosis.
ME is coded correctly as it has been for 40 years and should
remain as is and not be changed or subdivided. CFS is coded
correctly as is to fit the current definition.
Those with ME should oppose the changes put forth to NCHS
by the Coalition 4 ME/CFS and keep the codes as they currently
are.
Contact:
NCHS review committee: nchsicd9CM@cdc.gov
and
Donna Pickett, RHIA, MPH
Medical Classification Administrator
National Center for Health Statistics
email: Donna Pickett <dfp4@cdc.gov>
November 18, 2011 is the deadline for receipt of
public comments on proposed code revisions
discussed at the September 14, 2011 ICD
Coordination and Maintenance Committee meeting.
Jill McLaughlin
ME and some other counties have done the same. Like Dr. Phil says,
how's that working for ya? Has anything changed? Any improvement
in recognition or acceptance? Guess we could say no. So let's do
what hasn't worked and expect a different result. What is
this called?
Other countries can and do use different definitions or meanings.
This is what clinical modifications are for. The US has coded
them accurately. CFS is a symptom syndrome.
What was disconcerting is that the Coalition 4 ME/CFS posted
proposals, announcements, FAQ's, letters etc that said that the
purpose was to reclassify CFS as neurological.
http://coalition4mecfs.org/
Only on the NCHS agenda write up did we find out that it was
to code it to ME.
http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf
Their premise to begin with is flawed and confusing.
Mike Munoz, a member of the Coalition 4 ME/CFS steering
committee, stated: The goal of this proposal ... is to ensure
alignment with the best current case definition for CFS, which
includes both viral and bacterial triggers.
What CFS case definition includes viral or bacterial triggers?
What is the "best case definition" for CFS upon which they
wish to base said alignment? Their proposed code change
does not align with the case definition as none of the CFS
definitions define or describe what would be considered
to be a neurological illness.
This coalition can represent CFS and reclassify it but should
not interfere with other illnesses, nor should the CFSAC.
These same groups/people have orchestrated this
ME=CFS=ME/CFS agenda for months and keep promoting
and advertising it.
ME can be diagnosed and is a stand alone diagnosis. ME is
not a fatigue syndrome. ME/CFS is an amalgam and does
not really exist as a diagnosis. There is no ICD code or
classification. It was a term used in the Canadian definition
which is really a mix of both, but has no official acceptance
and is still used to mean different things.
ME/CFS implies they are the same illness, which they are
not. Most CFS definitions would exclude ME. So if X excludes
Y, then talking about X/Y, X/Y research etc. makes no sense
logically let alone scientifically. And we lament and blame
doctors, journalists etc when they don't get it?
This proposal and presentation to NCHS was all done behind
the backs of most patients and stakeholders, ME patients in
particular. This Coalition 4 ME/CFS is really a few State,
online and even local support groups, certainly not
representing many people in total. Were there any doctors
or professionals involved in this proposal? Why wouldn't
they admit it?
The Coalition 4 ME/CFS then said they were presenting their
proposal at the IACFS conference for input - AFTER it have been
presented to NCHS and was up for consideration. Perhaps it
would have been nice to ask for feedback or input BEFORE it
was done. This has been in the works for months as some
documents were dated July. And we have still had no report
or information from this conference presentation or session.
We were simply blindsided by this and trying to understand the
implications. And still no word from the CFIDS Association
or IACFS/ME. This is a change on the federal level and impacts
diagnosis, benefits, reimbursement etc. Yet our national professional
and patient orgs have no position? Opinion? Comment? Even
some explanation would have been helpful. But dead silence.
This proposal would deprive ME patients of their rightful
diagnosis by keeping it officially as and connected to
CFS. ME patients need to be properly diagnosed with ME,
not permanently and officially thrown into the CFS fatigue
wastebasket. Too many ME patients have been harmed
or even died, beyond the actual illness, but from the
CFS misdiagnosis.
ME is coded correctly as it has been for 40 years and should
remain as is and not be changed or subdivided. CFS is coded
correctly as is to fit the current definition.
Those with ME should oppose the changes put forth to NCHS
by the Coalition 4 ME/CFS and keep the codes as they currently
are.
Contact:
NCHS review committee: nchsicd9CM@cdc.gov
and
Donna Pickett, RHIA, MPH
Medical Classification Administrator
National Center for Health Statistics
email: Donna Pickett <dfp4@cdc.gov>
November 18, 2011 is the deadline for receipt of
public comments on proposed code revisions
discussed at the September 14, 2011 ICD
Coordination and Maintenance Committee meeting.
Jill McLaughlin