ICD 10 CM - ME and CFS to be split

[halcyon]

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.

Leonard Jason has done some work on this. He found that Fukuda could match 33.7% of healthy controls if used without minimum thresholds.

 

[alkt]

My knee jerk reaction is that this looks disastrous.

For anyone who does not know (I had to look it up) NOS is 'not otherwise specified'

Note that G93.3 includes postviral fatigue syndrome as well as myalgic encephalomyelitis.

If I was a US patient and my ME/CFS was clearly precipitated by a virus and was documented as such, I might be pushing for a re-diagnosis from CFS to PVFS (if not ME!)

Does anyone know how common a diagnosis of PVFS is in the US? In the UK, PVFS is a variant of CFS in the Oxford criteria but bear in mind that Oxford is technically for research only. [Edited to add that there is no distinction under NICE - just CFS/ME lumped together.]


If there is anything remotely joined up going on, perhaps this classification paves the way for SEID. It could be that patients who meet Fukuda but not SEID (essentially that means patients without PEM) will be under R53.82. Who knows what code will be allocated to SEID? And what impact, if any, will this have on the rest of the world?

in the uk any illness beginning with a virus is classed as post viral fatigue they only change this diagnosis after six months although i read recently on another post that this may have changed to four months. hope this helps .

 

[alex3619]

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

 

[alex3619]

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

This is correct, but I think by the 80s it was realized that some have died from it, and that the severity is so severe for some patients that the term benign can be misleading.

 

[Scarecrow]

in the uk any illness beginning with a virus is classed as post viral fatigue they only change this diagnosis after six months although i read recently on another post that this may have changed to four months. hope this helps .

Thanks but I was wondering specifically about the US.

You do bring up a very good point, though. After your PVFS diagnosis 'expires' but you have stubbornly refused to get better, do you then get diagnosed with CFS or ME? (Or CFS/ME (rather than ME/CFS) since we're now talking about the UK?)

 

[Scarecrow]

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.

Do you have a reference? Using Oxford as a benchmark to what other criteria?

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.

No, I'm not arguing that either. I have to apologise but it's just that I am on a bit of a mission regarding the Oxford criteria when I see the suggestion that they are being used clinically in the UK.

Yes, it's a concern when you see them used in research (to paraphrase, you've no idea if you've got apples, bananas or an apple-banana) but the clinical guidelines ought to identify ME patients with a far greater accuracy. In my own experience of being referred to specialists more than twenty years apart (the first time before Oxford criteria were published), they are not assessing you against anything as simplistic as Oxford. And I'm talking about one of the centres that took part in PACE (Edinburgh).

All the same, I'd be interested to see a comparison of patients referred to - and diagnosis confirmed by - Kings (Chalder-tastic) and Newcastle (Newton). That may well be revealing.

 

[Dx Revision Watch]

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.

The deadline for submitting proposals for the March C & M meeting was January 16.
The deadline for the September C & M meeting was July 17.

So the deadline for the September meeting has already been reached.

However, even if a request for consideration of the addition of a new code had been submitted by July 17, and had been approved by NCHS Director, the partial code freeze on changes to the draft would have deferred the insertion of any new code.

The partial code freeze does not lift until 12 months following ICD-10-CM implementation.

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

Partial Freeze of Revisions to ICD-9-CM and ICD-10-CM/PCS

• The last regular, annual updates to both ICD-9-CM and ICD-10 code sets were made on October 1, 2011.
• On October 1, 2012, October 1, 2013, and October 1, 2014 there were only limited code updates to both the ICD-9-CM and ICD-10 code sets to capture new technologies and diseases as required by section 503(a) of Pub. L. 108-173.
• On October 1, 2015, there will be only limited code updates to ICD-10 code sets to capture new technologies and diagnoses as required by section 503(a) of Pub. L. 108-173. There will be no updates to ICD-9-CM, as it will no longer be used for reporting.
• On October 1, 2016 (one year after implementation of ICD-10), regular updates to ICD-10 will begin.

No new diagnosis codes were added for the 2015 Release or the 2016 Release. Requests for additions for insertion of new codes, for example, the APA's requests in September 2013 and March 2014 for insertion of a number of new DSM-5 diagnoses (including SSD), did not fulfill the criteria for capturing new diagnoses while a code freeze is in operation.

Most of the requests for insertion of new codes that have been submitted by any party since 2011, if approved, cannot be inserted until after the regular update and revision cycle has resumed. That includes the request for insertion of SSD under F45.1 Undifferentiated somatoform disorder (if approved).

The Law 503(a) of Pub. L. 108-173 enabled the insertion of limited new diagnosis codes during a code freeze in order that codes to capture diseases like new strains of flu virus that have wide implications for public health could be rapidly inserted and would not have to wait until after an implemented code freeze had lifted.

The earliest that a new code that does not fulfill the conditions for consideration for insertion during a partial code freeze could be added (if approved by NCHS) is for on or after October 1, 2016. The 2016 Release was posted in June and contains no new diagnosis codes.

The deadline for the September 2015 C & M meeting has already been reached and the Tentative Agenda was posted, last week. The full Agenda isn't usually available until a day or two before Day One of a meeting, so a request for changes for consideration for implementation after the code freeze lifts cannot be ruled out until the full Agenda for the September meeting has been posted.

The next meetings after the September 2015 meeting are scheduled for March and September 2016. Meetings are held in public and followed by public comment periods during which comments on requests presented at a meeting and/or suggestions for alternatives to what has been proposed via a meeting can be submitted by any stakeholder, via email. Occasionally a proposal will be resubmitted in revised form at a later meeting and the comment periods add several weeks to the process. Decisions on submissions aren't usually made public until the next Addendum and Release are issued.

The annual releases are posted around June, so the FY Release and Addendum for 2017 would be expected to be posted in mid 2016.


Small point, but the "CM" in ICD-10-CM stands for "Clinical Modification."

As Mary S has pointed out, ICD-10-CM is U.S. specific.

Responsibility for its update and revision is the purview of CMS/NCHS - not WHO, Geneva, though ICD-10-CM does incorporate some of the annual updates to the WHO's ICD-10.

The update and revision of the WHO's ICD-10 is the responsibility of an international body - the WHO-FIC Update and Revision Committee which has a number of North American reps, including Donna Pickett.

ICD-10 is expected to continue to be revised for several more years but WHO has stated that it won't support revisions to ICD-10 indefinitely.

ICD-11 is now projected for presentation to WHA for approval/adoption in May 2018, but the ICD-11 package may not be ready for dissemination until later that year, or some point in 2019. Member States will need to evaluate the new edition and will transition from ICD-10 at their own pace - there is no mandated implementation date for adoption of ICD-11 by Member States.

It's not known when the UK NHSs would expect to transition to ICD-11. ICD-11 is still at the field testing stage and a great deal of work has still to be completed to produce a stable, usable product by 2018 that can be approved by WHA and that is also considered fit for purpose by the UN Statistical Commission and other stakeholder organizations.

ICD-11 is a considerably more complex package than ICD-10 was; it will be electronically based, has far more textual content, will be cross mapped to SNOMED-CT and will incorporate the various ICD Clinical Modifications as linearizations. It will require far more complex and costly preparations for adoption and implementation than the transition from ICD-9 to ICD-10.

 

[Dx Revision Watch]

Here are the Guidelines for ICD-10-CM for the 2016 Release:

ICD-10-CM Official Guidelines for Coding and Reporting
FY 2016

https://dxrevisionwatch.files.wordpress.com/2015/06/guidelinesicd10cm2016.pdf

Definitions of the ICD-10-CM terms:

Inclusion terms;

and

Excludes1 and Excludes2 can be found on pages 9 and 10.

12. Excludes Notes
The ICD-10-CM has two types of excludes notes. Each type of note has a different definition for use but they are all similar in that they indicate that codes excluded from each other are independent of each other.

a. Excludes1
A type 1 Excludes note is a pure excludes note. It means “NOT CODED HERE!” An Excludes1 note indicates that the code excluded should never be used at the same time as the code above the Excludes1 note. An Excludes1 is used when two conditions cannot occur together, such as a congenital form versus an acquired form of the same condition.

b. Excludes2
A type 2 Excludes note represents “Not included here”. An excludes2 note indicates that the condition excluded is not part of the condition represented by the code, but a patient may have both conditions at the same time. When an Excludes2 note appears under a code, it is acceptable to use both the code and the excluded code together, when appropriate.​

Notes re Signs and symptoms, are on page 13:

4. Signs and symptoms
Codes that describe symptoms and signs, as opposed to diagnoses, are acceptable for reporting purposes when a related definitive diagnosis has not been established (confirmed) by the provider. Chapter 18 of ICD-10-CM, Symptoms, Signs, and Abnormal Clinical and Laboratory Findings, Not Elsewhere Classified (codes R00.0 - R99) contains many, but not all codes for symptoms.​

and on page 16:

18. Use of Sign/Symptom/Unspecified Codes
Sign/symptom and “unspecified” codes have acceptable, even necessary, uses. While specific diagnosis codes should be reported when they are supported by the available medical record documentation and clinical knowledge of the patient’s health condition, there are instances when signs/symptoms or unspecified codes are the best choices for accurately reflecting the healthcare encounter. Each healthcare encounter should be coded to the level of certainty known for that encounter.

If a definitive diagnosis has not been established by the end of the encounter, it is appropriate to report codes for sign(s) and/or symptom(s) in lieu of a definitive diagnosis. When sufficient clinical information isn’t known or available about a particular health condition to assign a more specific code, it is acceptable to report the appropriate “unspecified” code (e.g., a diagnosis of pneumonia has been determined, but not the specific type). Unspecified codes should be reported when they are the codes that most accurately reflect what is known about the patient’s condition at the time of that particular encounter. It would be inappropriate to select a specific code that is not supported by the medical record documentation or conduct medically unnecessary diagnostic testing in order to determine a more specific code.
​

On page 8:

6. Abbreviations

a. Alphabetic Index abbreviations

NEC “Not elsewhere classifiable”

This abbreviation in the Alphabetic Index represents “other specified”. When a specific code is not available for a condition, the Alphabetic Index directs the coder to the “other specified” code in the Tabular List.

NOS “Not otherwise specified”

This abbreviation is the equivalent of unspecified.


b. Tabular List abbreviations

NEC “Not elsewhere classifiable”

This abbreviation in the Tabular List represents “other specified”. When a specific code is not available for a condition the Tabular List includes an NEC entry under a code to identify the code as the “other specified” code.

NOS “Not otherwise specified”

This abbreviation is the equivalent of unspecified.

​

From the Tabular List Release FY 2016:

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

Chapter 18
Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99)

Note:

This chapter includes symptoms, signs, abnormal results of clinical or other investigative procedures, and ill-defined conditions regarding which no diagnosis classifiable elsewhere is recorded.
Signs and symptoms that point rather definitely to a given diagnosis have been assigned to a category in other chapters of the classification. In general, categories in this chapter include the less well-defined conditions and symptoms that, without the necessary study of the case to establish a final diagnosis, point perhaps equally to twoor more diseases or to two or more systems of the body. Practically all categories in the chapter could be designated' not otherwise specified', 'unknown etiology' or 'transient'. The Alphabetical Index should be consulted to determine which symptoms and signs are to be allocated here and which to other chapters. The residual subcategories, numbered .8, are generally provided for other relevant symptoms that cannot be allocated elsewhere in the classification.

The conditions and signs or symptoms included in categories R00-R94 consist of:

(a) cases for which no more specific diagnosis can be made even after all the facts bearing on the case have been investigated;
(b) signs or symptoms existing at the time of initial encounter that proved to be transient and whose causes could not be determined;
(c) provisional diagnosis in a patient who failed to return for further investigation or care;
(d) cases referred elsewhere for investigation or treatment before the diagnosis was made;
(e) cases in which a more precise diagnosis was not available for any other reason;
(f) certain symptoms, for which supplementary information is provided, that represent important problems in medical care in their own right.

Excludes2:
abnormal findings on antenatal screening of mother (O28.-)
certain conditions originating in the perinatal period (P04-P96)
signs and symptoms classified in the body system chapters
signs and symptoms of breast (N63, N64.5)​

 

[alex3619]

Do you have a reference? Using Oxford as a benchmark to what other criteria?

I am looking. This was a UK study a few years back, and it was looking at clinically diagnosed patients. Its possible I misrecalled the details, so I am looking for the study. It has been cited again and again on PR. Its the basis for the claim the misdiagnosis rate in the UK is about 40%, which I have seen again and again. Its been a few years since I read it though.

Its actually easier to search for articles that claim anxiety and depression are often misdiagnosed as CFS. I am still looking for the source.

 

[alex3619]

It was a study by Julia Newton and it was about the failure rate using the NICE criteria. Thank you @Scarecrow for asking about this. Its NICE that fails 40% of the time, though with caveats. I hope to say more later.

Let me point out that some estimates are that 80% of CFS (not ME) patients are not diagnosed, and that they often get an anxiety or depression diagnosis, according to some US commentary. So diagnostic failure both lowers and raises apparent diagnosis rates, and it appears more likely to lower apparent CFS prevalence than raise it.

 

[Dx Revision Watch]

For ease of comparison:

How the U.S. specific ICD-10-CM draft had stood for the 2003 Release:

How the U.S. specific ICD-10-CM draft was changed for the 2007 Release (and has remained for the 2010 thru 2016 Releases):

 

[Scarecrow]

It was a study by Julia Newton and it was about the failure rate using the NICE criteria. Thank you @Scarecrow for asking about this. Its NICE that fails 40% of the time, though with caveats. I hope to say more later.

Let me point out that some estimates are that 80% of CFS (not ME) patients are not diagnosed, and that they often get an anxiety or depression diagnosis, according to some US commentary. So diagnostic failure both lowers and raises apparent diagnosis rates, and it appears more likely to lower apparent CFS prevalence than raise it.

Thanks.

I was already posting on the other thread simultaneously. My post is here. Don't want to derail this thread.

 

[Mary Schweitzer]

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.

The 323.9 code in ICD-9 and ICD-9-CM was equivalent to the G93.3 code in ICD-10 and ICD-10-CM - in both cases (benign) M.E. was placed in the chapter on neurology. M.E. has always been coded in neurology, since its first appearance in the codes in 1969.

Likewise, the R53.82 code in ICD-10-CM corresponds precisely to the old ICD-9-CM code for CFS. CFS was never in WHO's ICD-9, just in the US ICD-9-CM.

That's what makes it complicated - NCHS and CDC are saying they didn't change the code for CFS - and not mentioning that CFS is coded to G93.3 in WHO's ICD-10 (yes, in the index, but that's still where they placed it).

It DOES make a difference where it is coded. As long as CFS is coded in the R chapter, it is officially defined as a vague condition related to chronic fatigue. And M.E. has no identity in the US.

The other problem with the CFS coding in the US is that it remains unclaimed by any medical discipline. Not neurologists, not virologists, not immunologists ... it is one reason we have been abandoned at NIH in bureaus for women's illnesses that have no independent funding. There is some evidence that is going to change, and NINDS will adopt ME/CFS. The most progress we ever made politically was getting HHS to recognize the existence of M.E. in the context of CFS, AND CFSAC has been calling for adoption of the Canadian criteria since 2004.

While linking CFS to M.E. has effectively downgraded M.E. in those nations where it was already being diagnosed, such as the UK - in the US, linking CFS to M.E. has been the only way we could get M.E. legitimized. But it has had the unfortunate consequence of making those outsiders who hear about it believe that they are synonyms.

And, of course, the US is in violation of WHO's rules in placing CFS by itself. But I have mixed feelings about that. Perhaps it would be better if they were separate. I don't really know what the right answer is. Just that as long as CFS remains in R53.82, it remains conceptualized as "chronic fatigue" writ large, which is not a good thing. And with ME and CFS separated, there is no obvious bridge by which ME patients misdiagnosed with CFS in the US can get back to an ME diagnosis. Without publicity, ME will remain unknown in the US, and CFS will remain ... chronic fatigue..

 

[Dx Revision Watch]

Extract from a report on my site from October 20, 2011:

According to the background document Dr Wanda Jones presented to the Committee [CFSAC meeting, May 10-11, 2011]:

As it relates to CFS the use of two codes is consistent with the classification as there would be a code to capture CFS when the physician has determined the cause as being due to a past viral infection (G93.3) or if the physician has not established a link with a past viral infection (R53.82).

If code R53.82 were eliminated it would not be possible to disaggregate cases that are now distinguishable through the use of two codes.

There is a general equivalence map between ICD-9-CM and ICD-10-CM codes, however, if a concept is not carried over from the earlier version to the newer version data will be lost going forward.

Source: Page 3: ICD-related questions from CFSAC for May 2011 meeting

PDF​

Dr. Jones clarified for the Committee that if, in the clinician’s judgment, it was considered there is enough evidence to attribute the patient’s illness to a viral illness onset then the clinician could code to G93.3 (Postviral fatigue syndrome). If “however they could not identify where the trajectory developed toward CFS, then it would wind up in the R codes.” [1]

It has been further confirmed that testing for a viral illness is not required to assign a code – that coding is based on the clinician’s judgment.

And from the NCHS September 14 meeting Proposals document:

In ICD-10-CM chronic fatigue syndrome NOS (that is not specified as being due to a past viral infection) was added to ICD-10-CM in Chapter 18 at R53.82, Chronic fatigue, unspecified. ICD-10-CM retained code G93.3 to allow the differentiation of cases of fatigue syndrome where the physician has determined the cause as being due to a past viral infection from cases where the physician has not established a post viral link. It should be noted that including chronic fatigue syndrome NOS at code G93.3 would make it difficult to disaggregate cases that are now distinguishable through the use of two separate codes.
​

(...)

1] PDF Minutes of May 10-11 2011 CFSAC meeting
Discussion of International Classification of Diseases-Clinical Modification (ICD-CM) concerns

 

[Mary Schweitzer]

Extract from a report on my site from October 20, 2011:

According to the background document Dr Wanda Jones presented to the Committee [CFSAC meeting, May 10-11, 2011]:

As it relates to CFS the use of two codes is consistent with the classification as there would be a code to capture CFS when the physician has determined the cause as being due to a past viral infection (G93.3) or if the physician has not established a link with a past viral infection (R53.82).

If code R53.82 were eliminated it would not be possible to disaggregate cases that are now distinguishable through the use of two codes.

There is a general equivalence map between ICD-9-CM and ICD-10-CM codes, however, if a concept is not carried over from the earlier version to the newer version data will be lost going forward.

Source: Page 3: ICD-related questions from CFSAC for May 2011 meeting

PDF​

Dr. Jones clarified for the Committee that if, in the clinician’s judgment, it was considered there is enough evidence to attribute the patient’s illness to a viral illness onset then the clinician could code to G93.3 (Postviral fatigue syndrome). If “however they could not identify where the trajectory developed toward CFS, then it would wind up in the R codes.” [1]

It has been further confirmed that testing for a viral illness is not required to assign a code – that coding is based on the clinician’s judgment.

And from the NCHS September 14 meeting Proposals document:

In ICD-10-CM chronic fatigue syndrome NOS (that is not specified as being due to a past viral infection) was added to ICD-10-CM in Chapter 18 at R53.82, Chronic fatigue, unspecified. ICD-10-CM retained code G93.3 to allow the differentiation of cases of fatigue syndrome where the physician has determined the cause as being due to a past viral infection from cases where the physician has not established a post viral link. It should be noted that including chronic fatigue syndrome NOS at code G93.3 would make it difficult to disaggregate cases that are now distinguishable through the use of two separate codes.
​

(...)

1] PDF Minutes of May 10-11 2011 CFSAC meeting
Discussion of International Classification of Diseases-Clinical Modification (ICD-CM) concerns

That assumes US physicians actually used a PVFS diagnosis, or perhaps would start to - and I know of NO cases in the US where PVFS is being diagnosed.

The classification of CFS at R53.82 in the US's ICD-10-CM makes a stronger case for CFS to be viewed as a subset of all CF cases (which is how Reeves at CDC actually saw it), so you might think some knowledgeable physicians would be encouraged to switch to ME (or PVFS). However, if you just plug CFS into the numerous medical coding computer programs out there, it will pop out at R53. - and that is probably what's going to happen. Plug in CFS, get R53.82. Plug in ICD-9-CM's code 780.71, get back R53.82.

From a US-centric perspective, nothing is going to change.

 

[SOC]

From a US-centric perspective, nothing is going to change.

That's what I'm afraid of. I don't see how any of this will actually help us at the ground level. My pcp isn't going to change my diagnosis, and isn't likely to change how anything is coded, and everything will be same old, same old.

This is probably a good step forward from a broad political perspective, but we're a long way from seeing a near-term local effect, I imagine.

 

[alkt]

Thanks but I was wondering specifically about the US.

You do bring up a very good point, though. After your PVFS diagnosis 'expires' but you have stubbornly refused to get better, do you then get diagnosed with CFS or ME? (Or CFS/ME (rather than ME/CFS) since we're now talking about the UK?)

my gp diagnosed it as cfs guess what i am not happy about it or all the politics/controversy surrounding this diagnosis in the u k.25 years and stubbornly still here.

 

[Scarecrow]

If I was a US patient and my ME/CFS was clearly precipitated by a virus and was documented as such, I might be pushing for a re-diagnosis from CFS to PVFS (if not ME!)

in the uk any illness beginning with a virus is classed as post viral fatigue they only change this diagnosis after six months although i read recently on another post that this may have changed to four months. hope this helps .

Thanks but I was wondering specifically about the US.

You do bring up a very good point, though. After your PVFS diagnosis 'expires' but you have stubbornly refused to get better, do you then get diagnosed with CFS or ME? (Or CFS/ME (rather than ME/CFS) since we're now talking about the UK?)

my gp diagnosed it as cfs guess what i am not happy about it or all the politics/controversy surrounding this diagnosis in the u k.25 years and stubbornly still here.

Just as well in the international ICD-10, all are coded at G93.3 (although in the case of CFS, as @halcyon noted, it isn't listed there; but a search of the index gives 'syndrome - fatigue - chronic G93.3'. Not that the codes matter (except in an abstract way to distinguish between F48 fatigue syndrome that is chronic).

And from the NCHS September 14 meeting Proposals document:

In ICD-10-CM chronic fatigue syndrome NOS (that is not specified as being due to a past viral infection) was added to ICD-10-CM in Chapter 18 at R53.82, Chronic fatigue, unspecified. ICD-10-CM retained code G93.3 to allow the differentiation of cases of fatigue syndrome where the physician has determined the cause as being due to a past viral infection from cases where the physician has not established a post viral link. It should be noted that including chronic fatigue syndrome NOS at code G93.3 would make it difficult to disaggregate cases that are now distinguishable through the use of two separate codes.

That assumes US physicians actually used a PVFS diagnosis, or perhaps would start to - and I know of NO cases in the US where PVFS is being diagnosed.

The classification of CFS at R53.82 in the US's ICD-10-CM makes a stronger case for CFS to be viewed as a subset of all CF cases (which is how Reeves at CDC actually saw it), so you might think some knowledgeable physicians would be encouraged to switch to ME (or PVFS). However, if you just plug CFS into the numerous medical coding computer programs out there, it will pop out at R53. - and that is probably what's going to happen. Plug in CFS, get R53.82. Plug in ICD-9-CM's code 780.71, get back R53.82.

If you currently have a diagnosis of CFS, wouldn't the physician need actual evidence that the disease was precipitated with a viral infection to use G93.3? I mean, since these codes are used for insurance purposes, if there was no evidence, wouldn't that be fraud? So unless mono or one of the other viruses associated with postviral fatigue syndrome has been documented, by default you would end up with R53.82. Even if you had an occult viral infection.

This situation strikes me as madness. It's potentially creating an artificial distinction between the same disease state.

Alternatively, how can you get a diagnosis of ME in the US? Are any doctors actually using this diagnosis and, if so, what criteria do they use?

 

[halcyon]

Alternatively, how can you get a diagnosis of ME in the US? Are any doctors actually using this diagnosis and, if so, what criteria do they use?

I would be surprised if any doctors here are routinely using the 323.9 code. I would have asked my doctor to use it if I had known about it when applying for state disability. I told him to use 780.71 (yes, I had to tell him what code to use, he wouldn't diagnose me with anything but didn't protest at all when I suggested this diagnosis.) If I end up having to apply for federal disability I'm going to ask my doctor to use the G93.3 code since it will be in effect by then.

Interestingly, in terms of what codes doctors use for billing purposes, it seems like some don't actually use the CFS code. When I went to Stanford they used 780.79 which is "Other malaise and fatigue" and when I went to Dr. Chia he used 079.99 which is "Unspecified viral infection." My guess is that these codes must work better for billing and reimbursement purposes than the actual CFS code.

 

[Sidereal]

I would be surprised if any doctors here are routinely using the 323.9 code. I would have asked my doctor to use it if I had known about it when applying for state disability. I told him to use 780.71 (yes, I had to tell him what code to use, he wouldn't diagnose me with anything but didn't protest at all when I suggested this diagnosis.) If I end up having to apply for federal disability I'm going to ask my doctor to use the G93.3 code since it will be in effect by then.

I'm in Europe so this isn't directly relevant but I was diagnosed with G93.3 at one point and it was subsequently ignored by every other doctor. It's just not considered a real disease.