ICD 10 CM - ME and CFS to be split

[alex3619]

I think 'benign' is a traditional descriptor in the ICD, so it's not new.

In 1955/6 I think ME was first termed Benign Myalgic Encephalomyelitis. Benign was largely dropped in the 80s I think because they finally had an appreciation of the degree of severity. There are historical accounts of this but I forget the details.

 

[alex3619]

But still, those patients not meeting SEID or ME criteria might be left in a worse position than now.

I think this is a valid concern and needs to be watched. In particular this arises because of a policy of not running tests on CFS patients in the UK and in medical jurisdictions in which they have influence. So misdagnosis is probably rife. My own estimate is that the Oxford defintiion might have a misdiagnosis rate of between 60 to 70%, though there is no way to be sure until we have diagnostic biomarkers. That figure is likely to get worse if ME is clearly separated out.

(Edit. There are three separate issues here. First, misdiagnosis of CFS for other diseases runs at about 40% with a whole lot of caveats, as I mention later in the thread. Second, the high fail of Oxford should not have a direct effect on clinical diagnosis but might affect attitudes, and is based on inference. Third, if the USA experience is relevant then most patients with CFS will be misdiagnosed with a range of issues including depression and anxiety. )

 

[Sidereal]

Benign was included to indicate "non-fatal", not benign in the sense of not causing significant distress/symptomatology/disability.

 

[Scarecrow]

But still, those patients not meeting SEID or ME criteria might be left in a worse position than now. Edit: having read your recent posts, it seems that CFS will remain under the existing category (or very similar) so it shouldn't make any difference. In which case my earlier concerns were unjustified. I had thought that CFS was being re-categorised.

PVFS has always existed in G93.3, whereas CFS is newly created in R53.82. Is PVFS a different entity than CFS or is it a subset of CFS?

In particular this arises because of a policy of not running tests on CFS patients in the UK and in medical jurisdictions in which they have influence. So misdagnosis is probably rife. My own estimate is that the Oxford defintiion might have a misdiagnosis rate of between 60 to 70%, though there is no way to be sure until we have diagnostic biomarkers.

But Oxford CFS is not, or at least should not, be used for a clinical diagnosis. PEM is a requirement for NICE criteria so, if anything - all other things being equal - there should be a lower misdiagnosis rate in the UK than in the US.

 

[Bob]

In 1955/6 I think ME was first termed Benign Myalgic Encephalomyelitis. Benign was largely dropped in the 80s I think because they finally had an appreciation of the degree of severity. There are historical accounts of this but I forget the details.

BTW 'benign' is still used in the current international ICD-10:
http://apps.who.int/classifications/icd10/browse/2015/en#/G93

 

[halcyon]

Though in my defence, I did ask if this was a different business from the unified international code in the first post.

In the international WHO ICD-10 CFS is not listed as a separate disease. It's not even listed in the tabular data at all, it's only in the index pointing to ME. I think these ICD-10-CM changes are a step in the right direction. I'm very confused by the advocacy efforts that took place when news of this change came out a few years back. People were trying to advocate for shoving CFS into G93. I thought we were trying to run far away from this name.

 

[Bob]

I'm very confused by the advocacy efforts that took place when news of this change came out a few years back. People were trying to advocate for shoving CFS into G93. I thought we were trying to run far away from this name.

There's not a unified point of view about this. And there's much more to it than the simple issue of a name. Most patients in the USA have a 'CFS' diagnosis and I've found that, particularly in the USA, patients can be very defensive of their 'CFS' diagnosis, for good reason. Most patients never come onto forums like this, and even fewer patients learn about the incredibly complicated political dynamics, or the subtle but complex differences between 'CFS' and 'ME'. So if you say to a patient with a 'CFS' diagnosis that you want 'CFS' to be a second-rate diagnosis, or to be moved out of a neurological categorisation, or words to that effect, then they can understandably get very upset about it. And, instead, they want their diagnosis protected against forces that would undermine them and their lives.

 

[Dx Revision Watch]

I don't have time, this evening, to go through this thread, but quickly to clarify:

In 2001, the proposal for ICD-10-CM had been for locating all three terms under G93.3:

See: CDC/NCHS: Summary of Chronic Fatigue Syndrome and Its Classification in the ICD, March 2001 document archived here:

https://dxrevisionwatch.files.wordpress.com/2009/12/icd_code-cdc-march-2001.pdf


A draft of ICD-10-CM was released by CMS/NCHS for field testing and comment in mid 2003. The Tabular List draft for 2003 is archived here:

(See Chapter 6 G93.3 page 289 and Chapter 18, R53.82 page 1020 of the 2003 draft)

https://dxrevisionwatch.files.wordpress.com/2015/03/icd-10-cm-draft-2003.pdf

In 2003, under G93.3, there had been a

"Chronic fatigue syndrome, postviral"

with an "Excludes1" for a "chronic fatigue syndrome NOS" under R53.82

("NOS" means "Not otherwise specified")


Around 2004 (before the update and revision process for ICD-10-CM became a public process, in 2010, via the CMS/NCHS ICD-9-CM Coordination and Maintenance Committee meetings), the "Chronic fatigue syndrome, postviral" under G93.3 was removed.

This change came to light at a CFSAC meeting attended by Mary Schweitzer, during a presentation given by Dr William Reeves.

When the 2007 draft for ICD-10-CM was released it had the following changes to the proposed coding:

https://dxrevisionwatch.files.wordpress.com/2015/03/2007-tabular-list-release.pdf

G93.3 Postviral fatigue syndrome

Benign myalgic encephalomyelitis

Excludes1: chronic fatigue syndrome NOS (R53.82)


with the only listing for CFS under the Symptoms, signs chapter, as an inclusion term to "Chronic fatigue, unspecified"


R53.82 Chronic fatigue, unspecified

Chronic fatigue syndrome NOS

Excludes1: postviral fatigue syndrome (G93.3)


(See Chapter 6 G93.3 page 359 and Chapter 18, R53.52 page 1348 of the 2007 draft)




The ICD-10-CM Tabular List FY Release for 2016 is here

https://dxrevisionwatch.files.wordpress.com/2015/06/tabularicd10cm2016.pdf

(See Chapter 6 G93.3 page 271 and Chapter 18, R53.52 page 955 of the 2003 draft)


The presentations and discussions at the C & M Committee meetings around the proposed classification are archived on this page:

http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

C & M Meeting: September 14, 2011:
Diagnosis Agenda p10
Meeting Summary p2

Donna Pickett (CDC) slides on ICD - Clinical Modification Slide presentation PDF


C & M Meeting: September 19, 2012:
Diagnosis Agenda p46
Meeting Summary p8


As mentioned above, it's been known and discussed since the 2007 draft was released that the proposal was for a "Chronic fatigue syndrome NOS" in the R codes but no discrete coding for CFS under G93.3.

The explanation given by CDC back in 2010 was that if the clinician could document viral onset, then clinicians/coders could use the G93.3 code. If there was insufficient evidence of viral onset, then the Symptoms, signs R53.82 code could be used.


Canada's ICD-10-CA and Germany's ICD-10-GM have all three terms under G93.3.

This is how CFS appears in the WHO's ICD-10 Version for 2015:

(The yellow square indicates that CFS is an Index term and indexed to G93.3.)


In early 2013, ICD-11 was proposing that CFS would become the ICD Title term, with BME specified as the inclusion term to CFS. Postviral fatigue syndrome was listed under Synonyms to CFS, along with 13 other alternative and historical terms.

This is how the ICD-11 Beta draft had stood in early 2013, before the listing was obscured in the public version of the Beta draft:

According to WHO's Dr Robert Jakob, current proposals/rationales for the G93.3 legacy terms for ICD-11 are expected to be released in September or December, this year.

See: Continued absence of the ICD-10 G93.3 terms from the ICD-11 Beta drafting platform: Letter to key Revision personnel



Off topic, but while I'm here, on the subject of ICD-11, please also see:

Proposals for the classification of Chronic pain in ICD-11: Part 1

Proposals for the classification of Chronic pain in ICD-11: Part 2

Fibromyalgia

Edited: To insert Tabular List page numbers; C & M meeting links and materials

 

[Nielk]

This has been expected.

There's not a unified point of view about this. And there's much more to it than the simple issue of a name. Most patients in the USA have a 'CFS' diagnosis and I've found that, particularly in the USA, patients can be very defensive of their 'CFS' diagnosis, for good reason. Most patients never come onto forums like this, and even fewer patients learn about the incredibly complicated political dynamics, or the subtle but complex differences between 'CFS' and 'ME'. So if you say to a patient with a 'CFS' diagnosis that you want 'CFS' to be a second-rate diagnosis, or to be moved out of a neurological categorisation, or words to that effect, then they can understandably get very upset about it. And, instead, they want their diagnosis protected against forces that would undermine them and their lives.

The same issues would come up if SEID gets adopted in the US. The IOM specifically states that SEID should be coded separately from CFS.

In addition all CFS patients will have to be reevaluated to see if they fulfill the IOM criteria. An unknown percentage of patients will be left behind. What will happen to them? The IOM recommends that these patients (like those that don't experience PEM) should be treated for their symptoms. I.e. These patients will get no official diagnoses.

 

[Mary Schweitzer]

Let me echo the thorough explanation by DX Revision watch. (FWIW, the presentation to CFSAC that had the new code for ICD-10-CM was made by Reeves AND by Donna Pickett from NCHS together.)

First and foremost - IF YOU DO NOT LIVE IN THE US, THIS HAS NOTHING TO DO WITH YOU (except as a precedent).

When you find "CM" at the end, it means "clinical manual' and it refers to the US adaptation. The US has been stuck on ICD-9-CM all this time - while everybody else long ago shifted to ICD-10. We are finally getting ICD-10-CM on October 1. I suspect it will be everything we feared Y2K would be, because all the doctors, clinics, and hospitals have to switch billing codes simultaneously, and my bet is that there will be a lot of computers that crash.

n ICD-10-CM, M.E. is coded at G93.3 in the chapter on neurological conditions, as it is in all the other nations' ICD-10 manuals.

BUT, in ICD-10-CM, CFS will be coded in R53.72, right next to chronic fatigue. TECHNICALLY, it says CFS (NOS). To understand why, a bit of history.

When the US adopted “chronic fatigue syndrome” in 1988, WHO was finalizing ICD-10, so they did not put it anywhere in ICD-9. As we all know, WHO later linked it to ME in G93.3 under neurology in ICD-10.

Since CFS was not in ICD-9, the US was free to put it wherever they wanted in ICD-9-CM. ME was at 323.9. But CFS was put at 780.71 in the back of the codes, under “vague signs and symptoms” and “malaise and fatigue”. (Which is, incidentally, where PVFS originally was placed in ICD-9.)

[NOTE: “CM” at the end of ICD-9 and ICD-10 means “clinical manual” and it refers to the US version of ICD-9 and ICD-10. Only a few nations do this formally - Canada, Australia, Germany are the others I am aware of. ICD-10-CA is Canada’s version (which brought us ME/CFS linked); ICD-10-AM is Australia’s; and ICD-10-GM is Germany’s, which has something that roughly translates as CFIDS - Chronic Fatigue and Immune Dysfunction Syndrome - coded equally with ME in G93.3. The rest of the world uses ICD-10 with perhaps minor adjustments.]

SO - for over 20 years ICD-9-CM, which has still been in force in the US (despite the rest of the world adopting ICD-10 years ago), has coded CFS apart from ME in the wastebasket diagnoses (what’s left after you diagnose other things) and, conspicuously, as a further qualified version of chronic fatigue. The US has done this on its own - NO OTHER NATION DOES THIS.

ICD-10-CM is the US version of ICD-10 and after all these years, the US is actually adopting it on October 1.

The agency charged with creating ICD-10-CM is NCHS, the National Center for Health Statistics, which is part of … CDC. And we all know what CDC thinks of this disease.

I first heard Donna Pickett at NCHS give a presentation to CFSAC about ICD-10-CM around 2004, and at the time they stated that CFS would go with ME in G93.3 in ICD-10-CM.

But the late Bill Reeves, who was then head of the CFS section at CDC, vociferously protested this (he said that he could only diagnose CFS as a subset of chronic fatigue … and anyway, there was no evidence of neurological abnormalities …)

SO, NCHS came back and gave a presentation where POSTVIRAL CFS would be coded at G93.3, but CFS (NOS) - (not otherwise specified) would go to R53.82, which is equivalent to the old ICD-9-CM code of 780.71. [Reeves said little but helped with the PowerPoint presentation.]

Then … somebody either at WHO or at CDC objected to “postviral CFS” because it was the same as postviral fatigue syndrome, PVFS, which was already in G93.3. So “postviral CFS” disappeared from G93.3 in ICD-10-CM (again, ONLY in the US version). But, so far, they have not gotten rid of the “NOS” after CFS in R3.82. Even though it isn’t otherwise specified anywhere.

To make this more complex, I don't know anybody in the US who diagnoses PVFS. I don't know anybody in the US with a diagnosis of PVFS. It's all CFS.

Okay. Understand that?

Then along comes the IOM committee, and gets all this totally wrong. We think that is because they used internet - in the US, if you do a quick search for codes in ICD-10, you will mostly get ICD-10-CM codes. All these billing firms are trying to get you to buy their program for converting ICD-9-CM codes to ICD-10-CM codes. But they don't often bother with -CM. They describe what i just explained as if it was in ICD-10, not just ICD-10-CM - which, of course, is wrong. So IOM formally stated the US was adopting ICD-10, and they said that CFS went in R53.82 in ICD-10. Which is wrong. WHO has NEVER coded CFS in R53.82. It may be in the index and not in the tabular version, but it is linked to G93.3.

Several of us - myself included - wrote to the chair of the IOM to warn her that this was factually wrong. so they “fixed” it - and STILL have it wrong. The published version states that in ICD-10, CFS is coded with ME in the chapter on neurology at G93.3. Okay. They also note that "fatigue syndrome" is coded at F48.0 with neurasthenia. also true.

But then they say the US is adopting ICD-10 on October 1, and that is NOT true. The US is adopting ICD-10-CM, our own version of ICD-10, and in our version, CFS is placed in R53.82 and further qualified as CFS (NOS).

However, I give them points for not only saying CFS was an inappropriate name (though I don’t find SEID much better) but also specifying that The Disease should not be coded with “chronic fatigue” (which is the R3.82 code) or “neurasthenia (F48.0, a particular favorite of Wessely and White for years). Under the circumstances, I’m not so sure that saying the US was adopting ICD-10 (and therefore G93.3 for CFS) on October 1 was a mistake. It may have been shrewd. Either way, however, it's inaccurate.

TECHNICALLY, it is against the rules of a signatory nation in WHO to change the CHAPTER in which a disease is placed in the ICD codes. So while it is okay to move M.E. around in the neurology codes, it is NOT okay to completely place a condition (CFS) in a different chapter entirely (R). So, TECHNICALLY, the US has violated the rules (or at least required an exemption) just for CFS! As near as we can figure, this is the only place that the US made such a change in ICD-10-CM. We're special. Isn't that nice?

Now, in the US, of course, we don’t hear anything about the WHO ICD codes except as they have been modified by the US - and they don’t usually tell us they were modified.

What Donna Pickett at NCHS (and Beth Unger at CDC) will tell you is that they didn’t want to “change” where CFS was coded, meaning they wanted to put it in ICD-10-CM in the equivalent to ICD-9-CM - a very self-centered approach, since it DOES represent a change from ICD-10 worldwide.

To repeat:
UNLESS YOU LIVE IN THE US, THIS DOES NOT AFFECT YOU AT ALL (except perhaps as a precedent).

And I, for one, am not at all sure whether I don’t prefer that ME and CFS remain separated - as long as ME does remain in ICD-10-CM. They used to play games with ME in ICD-9-CM where some years it was there and some years it wasn’t.

PS - My favorite incident (alluded to in the above post) was about ten years ago when Donna Pickett at NCHS came back to explain where CFS would go in ICD-10-CM, clearly after having had some discussions with Bill Reeves, and they put their powerpoint display unto a whiteboard that was just behind the chair’s seat. You could see CFS (postviral) in G93.3, but CFS (NOS) at R53.82 happened to fall off the bottom of the whiteboard and could only be seen by the spectators who looked around the board at the wall - it could not be seen at all by the committee members. Another person attending showed it to me - and not being particularly shy about these things, I stood up and said - “Wait! What’s that last line?” Bill Reeves glared at me and raised the projector so you could see R53.82. Hee hee.

As a side note for those in the US, diseases given the (NOS) add-on may not be covered by insurance … I have not checked this out, but several people have told me this is so.

Isn’t this fun? (It’s also why I think October 1, when across the US hospitals and doctors and clinics have to shift from ICD-9-CM coding to ICD-10-CM coding, is going to be what everybody thought Y2K would be, and it wasn’t. If your appendix is starting to act up, go to Canada … that sound in the background will be all the medical billing computers crashing...)

 

[Mary Schweitzer]

This has been expected.


The same issues would come up if SEID gets adopted in the US. The IOM specifically states that SEID should be coded separately from CFS.

In addition all CFS patients will have to be reevaluated to see if they fulfill the IOM criteria. An unknown percentage of patients will be left behind. What will happen to them? The IOM recommends that these patients (like those that don't experience PEM) should be treated for their symptoms. I.e. These patients will get no official diagnoses.

Note: It is too late to get SEID coded in ICD-10-CM, being adopted in the US on October 1. The IOM presented their report AFTER the deadline for filing for a change in ICD-10-CM's original version - and I believe they have also missed the deadline for filing for a change in ICD-10-CM when the first revision goes into effect, October 2016. Unless the Secretary of HHS personally intervenes (which I think unlikely), it will be a long time before SEID has a billable code. We in the US will continue to be stuck with ME at G93.3 and CFS at R53.82.

 

[medfeb]

This doesn't really change any classifications. The ICD-10-CM brings the US in line with the international ICD-10 and makes ME a clear condition (previously it was somewhat buried in the ICD-9-CM). In ICD-9-CM, CFS was in "General symptoms", now it's in "General symptoms and signs".

You are right that CFS was not in the neurological chapter in ICD-9-CM. But in the ICD-10, both ME and CFS are in the neurological chapter. The U.S. is not aligned with the ICD-10 on that.

Perhaps the fate of SEID will be important - if it does get taken up, it will have a choice of homes. The question is where will it be put?

I dont think that the term "SEID" could be added until research was done to decide what chapter it goes in.

CFSAC recommended that the code G93.3 be used. But the CFSAC recommendation to use ME did not pass.

 

[halcyon]

You are right that CFS was not in the neurological chapter in ICD-9-CM. But in the ICD-10, both ME and CFS are in the neurological chapter. The U.S. is not aligned with the ICD-10 on that.

Right, I meant we are now in line with WHO ICD-10 with regards to ME at G93.3. It's no longer quietly buried in 323.9.

 

[fedupwithfatigue]

I've been trained as a medical coder, including training on ICD10. Essentially, only ME will now be a real diagnosis, according to the ICD10 coding system, which is what doctors use to bill insurance companies. Chronic fatigue and CFS NOS are now being thrown into the "symptom" category. These codes really just relate to billing (but are also sometimes used for disease tracking, etc.). A diagnosis code (ME) pays more than a symptom code (chronic fatigue). These codes won't really affect the actual patient or his/her care. It's more an issue of how things are coded for billing purposes. If a physician is versed in the codes, then he/she will be better off diagnosing people w/ ME b/c it's better for his/her bottom line.

 

[Sean]

These codes won't really affect the actual patient or his/her care. It's more an issue of how things are coded for billing purposes. If a physician is versed in the codes, then he/she will be better off diagnosing people w/ ME b/c it's better for his/her bottom line.

So, if we play this smart, it could actually end up a good thing for USA patients?

 

[SOC]

I can see trouble getting my GP to change my CFS diagnosis to an ME diagnosis. "The only official diagnosis criteria I see is Fukuda for CFS, which you fit. As far as I see, there is no official diagnosis criteria for ME and I'm not going to give you a diagnosis based only on your say-so."

 

[Nielk]

I can see trouble getting my GP to change my CFS diagnosis to an ME diagnosis. "The only official diagnosis criteria I see is Fukuda for CFS, which you fit. As far as I see, there is no official diagnosis criteria for ME and I'm not going to give you a diagnosis based only on your say-so."

Maybe if he gets paid more with the ME code, he will reconsider?

 

[SOC]

Maybe if he gets paid more with the ME code, he will reconsider?

Let's hope so.

Since all our local docs are employees of a clinic association, their individual pay won't change. However, if we can convince the clinic association it's in its best interest to change all the codes, that might work. They'd probably automatically change all the codes without bothering to actually do a diagnosis to distinguish ME patients from chronic fatigue (the symptom) patients if they get paid more.

I'm not sure how they're going to get paid more for doing the same thing, though. An office visit is an office visit. Pay is the same regardless of what you're seen for. I don't understand medical billing at all, but if I can use red tape to get better treatment, I'm all for it.

 

[alex3619]

An unknown percentage of patients will be left behind. What will happen to them?

This always happens with diagnostic revisions. There are codes specifically for diseases which fail to meet other diagnostic categories in ICD, including NOS codes.

Doctors are often faced with diagnostic issues. Its been admitted by some that they use whatever codes will be covered by insurance or allow for better treatment for their patients. In other words, doctors can get creative with codes in order to deliver better medical treatment.

Patients do this too. Many patients with ME find they cannot reliably apply for disability payments, but can get state benefits if they use a depression label. I listed all my problems when applying for disability, but it was a relatively trivial issue that was deemed serious enough to grant me disability. My more serious issues were just ignored. Its about rules and labels, the patient and the underlying disease process get ignored by bureaucracy.

The real issue is what happens with insurance and predatory medical specializations, like psychogenic psychiatry. Insurance companies might create separate policies for ME, SEID and CFS, and especially any NOS category. Psychogenic psychiatry broadly claims that any diagnosis not nailed down is psychogenic. They have been proved wrong possibly hundreds of times. Successfully proved? Zero.

Society attitudes can also be influenced by bureaucratic codes. While doctors are broadly dismissive and skeptical of the importance of codes, the public is largely unaware of this.

As the landscape changes we may find that advocacy has to struggle to catch up.

 

[alex3619]

But Oxford CFS is not, or at least should not, be used for a clinical diagnosis. PEM is a requirement for NICE criteria so, if anything - all other things being equal - there should be a lower misdiagnosis rate in the UK than in the US.

Yet the claimed misdiagnosis rate in the UK is about 40% based on a study a few years back. This used Oxford as a benchmark if I recall correctly, which Jason has shown can misdiagnose depression or anxiety as CFS at about a 60% rate.

(Edit: Misdiagnosis in the UK is at roughly 40% with caveats, but it has little to do with Oxford. These are separate issues. Its also complicated by CFS and ME being misdiagnosed as depression, anxiety or other disorders.)

I also do not argue that the US Fukuda gets it right. I just have little information to give me even an approximate idea as to what the misdiagnosis rate is. Byron Hyde's claim for about 90% misdiagnosis has nothing in the way of formal studies to back it up, but does have to be taken into account.

The science strongly indicates that misdiagnosis is common. Until we have diagnostic biomarkers we will always be guessing. This does not mean that those who lack these biomarkers are not sick, it means that they lack a sound diagnosis.