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Letter to NCHS

Jill McLaughlin

Senior Member
Yes, my husband actually responded! He does not get involved in advocacy per se but this has crossed the line into the medical arena and can affect patient diagnosis, treatment, reimbursement and disability issues.
Today it the deadline for comment to NCHS.

November 17, 2011

Donna Pickett RHIA, MPH
Medical Classification Administrator National Center for Health Statistics -?
CDC 3311 Toledo Road
Hyattsville, MD 20782
Via email: Donna Pickett <dfp4@cdc.gov>
cc: NCHS <nchsicd9CM@cdc.gov>

Re: ICD-?10 CM & ICD-?9 revisions for CFS (Chronic Fatigue Syndrome)

Dear Ms. Pickett:

I am a physician with 20 years experience treating patients with ME, CFS and FM.

Although there are some similarities, they are dissimilar enough that they
should be considered three separate entities. FM is mainly a muscucloskeletal
pain condition; CFS is profound fatigue substantially reducing functional
capacity. ME is a disease with primarily neurological challenges, dysautonomia
and CNS disturbances. For the most part, the primary providers for FM are
Rhumatologists; for CFS, internal medicine; for ME neurologists/ID specialists.
The providers are appropriately different as it should be because 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 disease (such
as ME) is defined by symptoms plus objective and measurable findings. Evidence
based medicine requires an appropriate treatment plan which must correspond to
the patients diagnosis. Each ICD code represents a specific diagnosis, based on
the corresponding definition. If a doctor fails to properly indicate the true
nature of the patients illness through proper coding it will inevitably result
in difficulty getting approval for appropriate treatment. Patients with a
discreet neurological illness will not be properly identified and treated if
diagnosed with a fatigue syndrome.

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 social
services guidelines for recognizing abuse and neglect, it includes many of the
symptoms used to define CFS. Major red flags are fatigue, sleepiness 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 inappropriate or harmful
treatments and forced to attend school, which can cause a great deal of damage,
sometimes permanent. Or children may be taken into State custody. There are few
pediatricians who understand ME so it is difficult 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.

For years persons with CFS (or CFIDS) have been subject to ignorance and
derision from the medical profession, educators and the general public. Mention
CFS often elicits an oh yeah, I was real tired too. I think I might have had

Understandably, people with CFS are frustrated. The initiative to link ME with
CFS may simply be a desperation attempt to get more respect. From the medical
perspective, this is the wrong move. If you look at all the definitions 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 with such diversity of
complaints and problems. Throwing ME and CFS together into one heading or one
diagnosis is the last thing that should be done. The only way to establish
better diagnostic and treatment protocols, or for basic and clinical research to
make any sense is to have well established and well circumscribed cohorts, which
this will not provide. This is what, for the most part, has been
done, and the results for patients in terms of diagnosis or effective treatment
have been abysmal. This must stop.

I feel the frustration of persons with CFS but it does not make sense to link 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 automatically confused or
mis-referenced as "chronic fatigue." People with CFS deserve this. CFS could
certainly and deservedly be renamed or redefined as appropriate; however,
misappropriating or linking to another disease is not the answer.

I recommend that ME should remain as G93.3 under Diseases of the Nervous
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
inappropriate or harmful.
I disagree with NCHS Option 2. ME should not be moved or subdivided or put
under a "chronic fatigue syndromes" category.


Dr. Paul J. McLaughlin


Jill McLaughlin

Senior Member
Just for clarification, he is a licensed physician and uses the same ICD and CPT codes for dx, reimbursement and benefits and works in a clinic with medical doctors where diagnoses often are treated in tandem. The system and applications are still the same and have the same ramifications.

Just for clarification Dr. McLaughlin is a chiropractor.