What's in a name? Or should I say code?

Tina

Well-Known Member
I came across this article on masscfids.com about illness codes. I guess what doctors use to bill insurance companies. It made me stop and think...I have no idea what code my doctor has on file for me. I have been told I have CFS. That is the extent of it. (You have to realize that I am an active duty military wife so we get all medical care at the local hospital and there is no paperwork)
Does it make sense to find out and if so does it make sense to ask for the G93.3 code? What are your thoughts?

On January 24, 2016, the author writes:
After more than thirty years, U.S. Centers for Disease Control and Prevention (CDC) is adopting an updated classification code for illnesses and diseases. This new code, the International Classification of Diseases-10-Clinical Modification (ICD-10-CM) will supersede the current U.S. code, the ICD-9-CM. Implementation of the new code is scheduled for October 1, 2014.
To understand the differences in these names and their importance to patients, a little history is in order. The devastating, flu-like illness with neurological and multi-systemic effects was identified as benign Myalgic Encephalomyelitis (bME) and Postviral Fatigue Syndrome (PVFS) by Dr. Melvin Ramsay and other doctors in Europe in the 1950s and 1960s. "Myalgic" means muscle pain and "encephalomyelitis" means inflammation or infection of the brain. Since the 1990s many patients and doctors in England, other European countries, Canada, Australia and New Zealand have used the term ME as the name for the illness. (When ME was first defined in England in the 1950s the word "benign" was attached for a short time; later the illness became simply ME.)
It is a bit confusing, but the author breaks down four different codes:

R53.82: Chronic Fatigue Syndrome, the name most used to identify the illness, will be placed after October 1, 2014 in the vague "orphan" category: Chapter 18, "Symptoms, signs, and abnormal clinical and laboratory findings, not elsewhere classified"

780.71: The code for CFS is 780.71. Because most doctors and insurance companies in the U.S. know ME/CFS as Chronic Fatigue Syndrome, the illness has been frequently coded as 780.71. It places CFS in the vague category: "General Symptoms", in the Chapter: "Symptoms, Signs, and Ill-Defined Conditions"

323.9: In the current ICD-9-CM, ME/CFS is classified as a nervous/organ system disease in Chapter 6, "Diseases of the Nervous System and Sense Organs" (320-389), under subheading 320-326 "Inflammatory Diseases of the Central Nervous System". The Tabular Listing gives the specific code as 323.9: "Unspecified cause of encephalitis, myelitis, and encephalomyelitis." The associated Index document lists "Encephalomyelitis (chronic) (granulomatous) (hemorrhagic necrotizing, acute) (myalgic, benign) (see also Encephalomyelitis)" also coded as 323.9.

G93.3: However, less well known by physicians is the placement both in the current ICD-9-CM and the new, revised code ICD-10-CM of (b)ME and Postviral Fatigue Syndrome (PVFS) under Diseases of the Nervous System. In the ICD-10-CM, (b)ME and PVFS will be coded in Chapter 6 "Diseases of the Nervous System", in the subcategory G93 "Other Disorders of the Brain". G93.3 is the actual code for (b)ME and PVFS

Ultimately the author states:
Obviously, most patients with ME/CFS will be far better served if they are coded as 323.9 under the current code and under G93.3 when the new code takes effect.
Full article here: https://www.masscfids.org/resource-library/8-diagnosis/456-updated-us-illness-codes-perpetuate-medical-ignorance-of-mecfs
 

weyland

Well-Known Member
Does it make sense to find out and if so does it make sense to ask for the G93.3 code? What are your thoughts?
It's hard to say right now. As the ICD-10-CM was just recently rolled out, and ME was moved to it's own code to match the international ICD-10, it seems likely that most US insurance companies haven't dealt with much or any billing under this code. This could either be a good thing or a bad thing. Given that ME is in the neurological chapter, they might handle billing for it more favorably, or they might reject it since they are unfamiliar with it. I know nothing about how it actually works though, so this is just supposition at this point.

The other issue is that of criteria. The ICD is a disease classification system, it's not meant to document how a disease should be diagnosed. At the time when ME was entered into the ICD in the late 1960s, there was no real consensus case definition for diagnosing ME, and CFS hadn't been imagined yet. The 2011 international consensus criteria is intended to be an ME criteria, but the problem is that it was heavily developed using data from CFS studies and written by authors that see and study CFS patients. The ICC doesn't necessarily match the criteria used by people like Melvin Ramsay and Elizabeth Dowsett who were pioneers in the field of ME research long before CFS was created.

The criteria that Ramsay and Dowsett used was:
We adopted the following clinical criteria for investigation of ME: a syndrome commonly initiated by respiratory and/or gastro-intestinal infection but an insidious or more dramatic onset following neurological, cardiac or endocrine disability occurs. The pathognomonic features are: a complaint of general or local muscular fatigue following minimal exertion with prolonged recovery time; neurological disturbance, especially of cognitive, autonomic and sensory functions; variable involvement of cardiac and other systems; a prolonged relapsing course.
Dowsett later developed the following criteria:
All patients should fulfill the following five criteria:

A new onset of significantly abnormal levels of muscle fatiguability and/or muscle weakness, precipitated by relatively minor levels of activity. Symptoms typically worsen during the next 24‐48 hours.

The presence of symptoms indicating the involvement of the brain and central nervous system ﴾e.g. impaired short‐term memory and concentration, disturbed sleep patterns, balance problems﴿.

Periods of impaired circulation compatible with autonomic dysfunction ﴾e.g. facial pallor, disturbances in thermoregulation including inappropriate sweating and sensitivity to both heat and cold; postural hypotension and/or orthostatic intolerance﴿.

Fluctuation of symptoms, from hour to hour and day to day.

These symptoms must have been present during the past three months ﴾to exclude patients with the debility which often follows illnesses such as influenza﴿.
We don't really know if the people that we describe as having CFS today are what Ramsay and Dowsett would have recognized as ME. We do know that Dowsett was very against the idea of CFS and its conflation with ME, and pointed out the fact that people with ME don't primarily suffer from persistent fatigue, which is the entire basis for the Fukuda/CCC/SEID CFS criteria.

Also it should be pointed out that the ICD-10-CM made G93.3 ME and R53.82 CFS mutually exclusive. Both codes cannot be applied to the same person simultaneously. I'm not sure if this has any implications for someone that was previously billed under the CFS code.

In general it's my personal opinion that people that fit the historical description of ME should start to demand this diagnosis be used when seeing doctors. I believe that we need to spread awareness of the existence of ME as a post-infectious neurological disorder and move away from its conflation with CFS.
 
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Remy

Administrator
We typically work backwards with the coding...look at the tests or labs being ordered and determine which covered code best suits me and will get the test covered.

My list of diagnosis codes is very, very long but I haven't paid for any labs in a long time!

Using the ME code could go either way, I think. It's probably not going to be an approved code for much of anything outside routine lab work getting covered. I think one has to be prepared with other, more specific codes to cover other symptoms too.

Insurance is a mystery though.
 

Tina

Well-Known Member
At the moment, this is not really an insurance question for me. As I said we are active duty military. Everything is in house. For all I know there is no "code" associated with my case.

What I find interesting is how a medical professional might treat you based on a diagnosis name.

Just food for thought.
 

ShyestofFlies

Well-Known Member
My diagnosis on paper is R53.82 from my specialist. She's been at this for a few decades now, so I presume she's had some first hand experience with patients reporting what tests get covered and what don't depending on codes. ME appears no where in my charts or billing that I know of at this time.

I am interested in hearing how many specialists code ME and CFS though. Also the dysautonomia symptoms many get as well?

So far *fingers crossed* no tests have been denied under this code. I don't know what other codes may be coupled with it when they're submitted to insurance.

Oct 1, 2015 was the roll out day of ICD-10-CM in the US.

In the US I think the big deal is you want whatever will cover you and matches your symptoms, and if you need a code to back up disability claims or for proof when changing/adding doctors.

As long as my tests are covered and I have documentation of my illness at this point, that's enough to get by on the codes I get now. Still I'd like an accurate representation of my illness- and doctors, lay people, and the insurance to take this all seriously.

It's a catch 22- we need to fight but it's hard to fight unless you are well enough. You run a great risk of not being well enough unless you fight.
 

weyland

Well-Known Member
What I find interesting is how a medical professional might treat you based on a diagnosis name.
Leonard Jason did an interesting study on this many years ago:
In this study, attributions about CFS were measured in three groups of medical trainees. All groups read the same case study of a person with classic symptoms of chronic fatigue syndrome, with the only difference being in the type of name given. Trainees then were asked to provide attributions about certain aspects of the illness, including its cause, severity, and prognosis. Results suggested that, across name conditions, most trainees appeared to consider the symptom complex of CFS a serious illness resulting in poor quality of life. In addition, findings indicated that the name, chronic fatigue syndrome, may be regarded less seriously than the Myalgic Encephalopathy name with respect to some important aspects of the illness.
 

weyland

Well-Known Member
In the US I think the big deal is you want whatever will cover you and matches your symptoms, and if you need a code to back up disability claims or for proof when changing/adding doctors.
For now, SSA considers ME a subtype of CFS, so both are considered equally in theory. My understanding is they look less at diagnosis anyways and more at objective evidence of medical impairment. I'm not sure what the situation is with private disability insurance.
 

ShyestofFlies

Well-Known Member
Leonard Jason did an interesting study on this many years ago:
It has been my experience that most doctors (who are not specialists in the illness, and may not even be aware of it) don't want to touch diagnosis with a 10 foot pole in this category. Part of it is they just simply don't know how or what to do, and many don't even seem to know who to refer you to.

When a diagnosis is labeled or included in my paperwork from non-specialist docs, it's typically:

"chronic fatigue"

Syndrome isn't even acknowledged, for all that means- maybe not as much as we need, still it's better then the vague, non-descript, single symptom implied by just "chronic fatigue." I do my best to add "syndrome" as if we're playing marco-polo.

If your doctor is only giving you "chronic fatigue" you better keep at them to record your other serious symptoms- "If it's not in the chart it doesn't exist" is my typical doctors office experience...


With all this said, I do find most of my docs have taken me seriously now... but I think there was some perception change once I came back with an independently sought and paid for opinion from a specialist in the field. Much more serious, much more willing to hear what tests are showing, and back up getting tests.
 

ShyestofFlies

Well-Known Member
For now, SSA considers ME a subtype of CFS, so both are considered equally in theory. My understanding is they look less at diagnosis anyways and more at objective evidence of medical impairment. I'm not sure what the situation is with private disability insurance.
That's excellent to know! Might be silly, but I've been crossing my fingers we'll get added onto the blue book at some point, but no dice yet (there's a few "TBA" blank condition spaces in the neurological category).
 

Tina

Well-Known Member
Four codes were listed on the website that I provided at the beginning of this thread.

Two have expired:
780.71: Chronic Fatigue Syndrome
323.9: Unspecified Causes of Encephalitis, Mylelitis & Encephalomyelitis

If you want to see the exact definitions of the other two, follow the links.
R53.82: Chronic Fatigue, Unspecified: http://www.icd10data.com/ICD10CM/Codes/R00-R99/R50-R69/R53-/R53.83

G93.3 Postviral Fatigue Syndrome: http://www.icd10data.com/ICD10CM/Codes/G00-G99/G89-G99/G93-/G93.3

The information listed under "Clinical Information" is identical under both codes but ---
R53.82 is listed under "Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified" and
G93.3 is listed under "Diseases of the nervous system"
 

weyland

Well-Known Member
The information listed under "Clinical Information" is identical under both codes but ---
It should be pointed out that this information is not from the ICD, WHO or otherwise. This is something that icd10data.com tacks on to the ICD information, I'm not sure where they source it from.

It's amusing that the clinical information they provide for ME/PVFS is for CFS, then a few lines down it says that ME/PVFS excludes CFS (as the ICD-10-CM does). I contacted them to point this out a while ago and never heard back.
 

Tina

Well-Known Member
It should be pointed out that this information is not from the ICD, WHO or otherwise. This is something that icd10data.com tacks on to the ICD information, I'm not sure where they source it from.

It's amusing that the clinical information they provide for ME/PVFS is for CFS, then a few lines down it says that ME/PVFS excludes CFS (as the ICD-10-CM does). I contacted them to point this out a while ago and never heard back.
Thank you for pointing this out. I thought this was legit.
 

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