Donna Pickett RHIA, MPH
Medical Classification Administrator National Center for Health Statistics =
-=C2=AD=E2=80=90 CDC 3311 Toledo Road
Hyattsville, MD 20782
Via email: Donna Pickett <dfp4@cdc.gov>
cc: NCHS <nchsicd9CM@cdc.gov>
Re: ICD-=C2=AD=E2=80=9010 CM & ICD-=C2=AD=E2=80=909 revisions for CFS (Chro=
nic Fatigue Syndrome)
Dear Ms. Pickett:
I am a physician with 20 years experience treating patients with ME, CFS an=
d FM.
Although there are some similarities, they are dissimilar enough that they =
should be considered three separate entities. FM is mainly a muscucloskelet=
al pain condition; CFS is profound fatigue substantially reducing functiona=
l capacity. ME is a disease with primarily neurological challenges, dysauto=
nomia and CNS disturbances. For the most part, the primary providers for F=
M are Rhumatologists; for CFS, internal medicine; for ME neurologists/ID sp=
ecialists. The providers are appropriately different as it should be becaus=
e the most effective treatment protocols are quite different.
ME has a clearly defined disease process while CFS by definition has always=
been a syndrome. A syndrome (for example CFS) is defined by symptoms. A di=
sease (such as ME) is defined by symptoms plus objective and measurable fin=
dings. Evidence based medicine requires an appropriate treatment plan which=
must correspond to the patients diagnosis. Each ICD code represents a spe=
cific diagnosis, based on the corresponding definition. If a doctor fails t=
o properly indicate the true nature of the patients illness through proper =
coding it will inevitably result in difficulty getting approval for appropr=
iate treatment. Patients with a discreet neurological illness will not be p=
roperly identified and treated if diagnosed with a fatigue syndrome.=20
For children with ME, a CFS diagnosis can be disastrous. Not only does the =
general public not get it, but if you look at the various department of soc=
ial services guidelines for recognizing abuse and neglect, it includes many=
of the symptoms used to define CFS. Major red flags are fatigue, sleepines=
s in class, tardiness, decreased or erratic attendance. All you need is one=
over anxious teacher to misinterpret and parents have little recourse. It=
happens way too frequently. Children may be forcibly subjected to inapprop=
riate or harmful treatments and forced to attend school, which can cause a =
great deal of damage, sometimes permanent. Or children may be taken into St=
ate custody. There are few pediatricians who understand ME so it is difficu=
lt to find support or backup. No one who cares about children should allow =
kids with ME to be diagnosed with CFS or in any way connecting or combining=
them as this proposal by the Coalition 4 ME/CFS would do.=20
For years persons with CFS (or CFIDS) have been subject to ignorance and de=
rision from the medical profession, educators and the general public. Menti=
on CFS often elicits an=E2=80=9C oh yeah, I was real tired too. I think I m=
ight have had that.=E2=80=9D=20
Understandably, people with CFS are frustrated. The initiative to link ME w=
ith CFS may simply be a desperation attempt to get more respect. From the m=
edical perspective, this is the wrong move. If you look at all the definit=
ions of these illnesses it includes a huge array of signs and symptoms. It=
is absurd to think that there is one cause and one cure for the people wit=
h such diversity of complaints and problems. Throwing ME and CFS together i=
nto one heading or one diagnosis is the last thing that should be done. T=
he only way to establish better diagnostic and treatment protocols, or for =
basic and clinical research to make any sense is to have well established a=
nd well circumscribed cohorts, which this will not provide. This is what, f=
or the most part, has been=20
done, and the results for patients in terms of diagnosis or effective treat=
ment have been abysmal. This must stop.
I feel the frustration of persons with CFS but it does not make sense to li=
nk up CFS with ME anymore than CFS with MS or with anything other distinct =
diagnosis that may share the vague symptom of fatigue. To dredge up an old =
idea, CFS should have a more appropriate name. One that is taken seriously,=
but it should be one that stands alone, and one which would not be automat=
ically confused or mis-referenced as "chronic fatigue." People with CFS des=
erve this. CFS could certainly and deservedly be renamed or redefined as ap=
propriate; however, misappropriating or linking to another disease is not t=
he answer.=20
I recommend that ME should remain as G93.3 under =E2=80=9CDiseases of the =
Nervous System.=E2=80=9D
I recommend denying the request to classify CFS as G93.9. If CFS should be =
reclassified/redefined/renamed then do so without involving or interfering =
with any other illness, especially one for which a CFS diagnosis would be i=
nappropriate or harmful.
I disagree with NCHS =E2=80=9COption 2.=E2=80=9D ME should not be moved or =
subdivided or put under a "chronic fatigue syndromes" category.=20
Sincerely,
Dr. Paul J. McLaughlin
.
.
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