The WHO codes CFS to ME and other counties have done the same.=20
Like Dr. Phil says, how's that working for ya? Has anything changed?=20
Any improvement in recognition or acceptance? Guess we could say no.=20
So let's do what hasn't worked and expect a different result. What is=20
this called?=20
Other countries can and do use different definitions or meanings.=20
This is what clinical modifications are for. The US has coded=20
them accurately. CFS is a symptom syndrome.=20
What was disconcerting is that the Coalition 4 ME/CFS posted=20
proposals, announcements, FAQ's, letters etc that said that the=20
purpose was to reclassify CFS as neurological.=20
http://coalition4mecfs.org/
Only on the NCHS agenda write up did we find out that it was=20
to code it to ME.=20
http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf
Their premise to begin with is flawed and confusing.=20
Mike Munoz, a member of the Coalition 4 ME/CFS steering=20
committee, stated: =E2=80=9CThe goal of this proposal ... is to ensure=20
alignment with the best current case definition for CFS, which=20
includes both viral and bacterial triggers.=E2=80=9D=20
What CFS case definition includes viral or bacterial triggers?
What is the "best case definition" for CFS upon which they=20
wish to base said alignment? Their proposed code change=20
does not align with the case definition as none of the CFS=20
definitions define or describe what would be considered=20
to be a neurological illness.=20
This coalition can represent CFS and reclassify it but should=20
not interfere with other illnesses, nor should the CFSAC.=20
These same groups/people have orchestrated this=20
ME=3DCFS=3DME/CFS agenda for months and keep promoting=20
and advertising it.=20
ME can be diagnosed and is a stand alone diagnosis. ME is=20
not a fatigue syndrome. ME/CFS is an amalgam and does=20
not really exist as a diagnosis. There is no ICD code or=20
classification. It was a term used in the Canadian definition =20
which is really a mix of both, but has no official acceptance=20
and is still used to mean different things.=20
ME/CFS implies they are the same illness, which they are=20
not. Most CFS definitions would exclude ME. So if X excludes=20
Y, then talking about X/Y, X/Y research etc. makes no sense=20
logically let alone scientifically. And we lament and blame=20
doctors, journalists etc when they don't get it?=20
This proposal and presentation to NCHS was all done behind=20
the backs of most patients and stakeholders, ME patients in particular. =20
This Coalition 4 ME/CFS is really a few State, online and even=20
local support groups, certainly not representing many people=20
in total. Were there any doctors or professionals involved in this=20
proposal?=20
The Coalition 4 ME/CFS then said they were presenting their=20
proposal at the IACFS conference for input - AFTER it have been=20
presented to NCHS and was up for consideration. Perhaps it=20
would have been nice to ask for feedback or input BEFORE it=20
was done. This has been in the work for months as some=20
documents were dated July. And we have still had no report=20
or information from this conference presentation or session.=20
We were simply blindsided by this and trying to understand the=20
implications. And still no word from the CFIDS Association=20
or IACFS/ME. This is a change on the federal level and impacts=20
diagnosis, benefits, reimbursement etc. Yet our national professional=20
and patient groups have no position? Opinion? Comment? Even=20
some explanation would have been helpful. But dead silence.=20
This situation has been an enormous betrayal of the patient=20
community. This proposal would deprive ME patients of their=20
rightful diagnosis by keeping it officially as and connected to=20
CFS. ME patients need to be properly diagnosed with ME,=20
not permanently and officially thrown into the CFS fatigue=20
wastebasket. Too many ME patients have been harmed=20
or even died, beyond the actual illness, but from the=20
CFS misdiagnosis.=20
=20
ME is coded correctly as it has been for 40 years and should=20
remain as is and not be changed or subdivided. CFS is coded=20
correctly as is to fit the current definition.=20
=20
Those with ME should oppose the changes put forth to NCHS=20
by the Coalition 4 ME/CFS and keep the codes as they currently=20
are.
=20
Contact:
NCHS review committee: nchsicd9CM@cdc.gov
and
Donna Pickett, RHIA, MPH
Medical Classification Administrator
National Center for Health Statistics
email: dfp4@cdc.gov
=20
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.=20
Jill McLaughlin
=20
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D
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