ICD 10 CM - ME and CFS to be split

[worldbackwards]

Just spotted two very interesting tweets from @Dx Revision Watch:

Which, I believe, means that ME/PVFS and CFS are to be split, with CFS becoming a synonym for Chronic Fatigue.

I don't think this ends well. Does it? Am I missing something? Is this perhaps a different thing from the ICD codes that place them all together.

 

[Cheshire]

If I understand correctly, ME remains coded under neurological disorders, while CFS is under chapter 18, Symptoms, signs, clinical forms, and abnormal clinical and laboratory findings, not elsewhere classified, where they also intend to place fibromyalgia.
This chapter 18 seems a lot like a waste basket...

Don't know what to think...

 

[crowquill]

This may make things easier as once we know definitively what each means according to international classification, patients can insist that medical practitioners use the correct terminology for their illness.

Of course, those who are not aware of the difference will still get caught up in the general melee and subjected to the usual psychological interventions (in the UK at least).

Education of both patients and medical professionals is extremely important and should be a priority for patient advocate groups.

 

[Valentijn]

It might mean that it will be very important to get a diagnosis of ME, where CFS was previously used.

I could see some benefit in providing a clear distinction between CFS (Fukuda, Oxford) and ME (CCC, ICC, SEID). But for that to happen, SEID (or CCC/ICC, if we dare to dream) will need to be officially adopted. There's not much point in having a distinct ME category if there's no distinct ME diagnosis and criteria.

 

[Bob]

Hmm. Interesting. But complex. This only applies to the US (and perhaps a few other countries?) because other countries don't use this modified version of the ICD-10.

I think it may be unhelpful to many patients because almost everyone in the US has a 'CFS' diagnosis, so they might struggle with insurance claims if 'CFS' is recategorised and removed from the neurological section. It's also probably a delight for those who want 'CFS' categorized as a psychosomatic disorder.

But it's also complicated because govt bodies (e.g. the FDA) have started using the term ME/CFS. And the CCC diagnoses 'ME/CFS'. And what happens when the CDC drops Fukuda, adopts the IOM report, and renames CFS to SEID?

 

[MikeJackmin]

What does "NOS" mean in this context?

And how many doctor/patient fist fights will be instigated by classifying ME as 'benign"?

 

[Scarecrow]

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.]

But it's also complicated because govt bodies (e.g. the FDA) have started using the term ME/CFS. And the CCC diagnoses 'ME/CFS'. And what happens when the CDC drops Fukuda, adopts the IOM report, and renames CFS to SEID?

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?

 

[halcyon]

I think this is a good thing. As the IOM report noted, they are not equivalent diagnoses. From an advocacy standpoint it seems like exactly what we want, further distance from the harmful moniker and poor diagnostic criteria.

 

[worldbackwards]

I think this is a good thing. As the IOM report noted, they are not equivalent diagnoses. From an advocacy standpoint it seems like exactly what we want, further distance from the harmful moniker and poor diagnostic criteria.

But if everyone with ME has a diagnosis of CFS (as they pretty much do in the US), then I suspect that doctors are not going to be particularly au fait with the finer points of diagnostic politics - they'll all just get dumped in with Chronic Fatigue.

This reminds me of what Peter White used to say, that there was an illness called ME but it doesn't exist anymore - it's all CFS now. I suspect that that will be the lesson, if any, taken by doctors from this.

 

[halcyon]

This reminds me of what Peter White used to say, that there was an illness called ME but it doesn't exist anymore - it's all CFS now. I suspect that that will be the lesson, if any, taken by doctors from this.

Well this is ammo against that claim. ME is right there in black and white, it's neurological, and it's an exclusionary diagnosis with CFS so they can't be the same thing.

 

[duncan]

What then is to happen to all those CFS diagnoses that have accrued in the US these past 30 years for lack of ME diagnoses? Is there an item exchange queue all those tens of thousand of patients need to line up for?

It's not like clinicians are just going to know to modify diagnoses. They will be skeptical. The CFS label will stick regardless of whether someone has ME or not.

The insurance ramifications for some may be grim. Please correct me if I am wrong. If it is no longer neurological, can an insurance concern interpret its etiology as it pleases?

 

[panckage]

I wish they would spend their efforts learning about what our disease is before they try to classify it. Whatever they chose chances are its just going to have to be reclassified again

 

[halcyon]

Please correct me if I am wrong. If it is no longer neurological, can an insurance concern interpret its etiology as it pleases?

CFS in the US has never been neurological. This changes nothing. In ICD-9-CM, 780 is "General symptoms".

 

[halcyon]

I wish they would spend their efforts learning about what our disease is before they try to classify it. Whatever they chose chances are its just going to have to be reclassified again

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".

 

[worldbackwards]

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".

Having looked about, you are right and can claim your free bowl of cornflakes. Though in my defence, I did ask if this was a different business from the unified international code in the first post.

Perhaps it is a good thing then - it wasn't clearly classified along with PVFS before. But I sincerely doubt that there will be a glut of ME diagnoses in the wake of this, it'll probably just be business as usual.

 

[alex3619]

This may make things easier as once we know definitively what each means according to international classification, patients can insist that medical practitioners use the correct terminology for their illness.

I really don't think this will make much of a difference in the short and medium term. In the longer term it might. This is because doctors might code it for ME, but still treat it as CFS. In general doctors don't really care about bureaucratic codes, and such codes do not dictate tests or treatment.

In the UK the only way we will see a difference is for NICE to actually treat them differently, at least for the next several years. There is a real risk that ME is coded differently and then treated the same under the assumption this is yet another MUS that is really psychosomatic. This has to be opposed separately from just using ICD codes.

In the US the adoption of SEID might do something similar.

What is of concern is those patients who do not easily get an ME diagnosis. For example, those who are coded as CFS because no tests are run, under NICE guidelines, and doctors dismiss other symptoms. Or patients who fit many psychiatric diagnoses. One observation that has recently been made by a presenter in another thread, is that even most healthy people can now be diagnosed with a psychatric disorder, the diagnostic categories are that broad.

Also of concern is any patient who has some kind of fatigue syndrome other than ME. With prevailing attitudes they will still be as vulnerable to a psych diagnosis as they are now.

ICD and DSM are just bureaucratic codes, and its long been recognized they have little scientific or clinical validity. They are reporting codes.

Yet there is a public relations value here, especially if advocacy uses this carefully. However we have to wait for finalization of the ICD before we can do anything.

It will also not prevent some psychiatrists from rediagnosing patients. If they decide somatoform disorder, or one of the modern equivalents, is more appropriate, then there will still be issues. This already happens as they ignore existing ICD codes entirely (aside from coding forms), which is pretty well what many doctors do, if not most of them.

What might be of value in the medium to long term is that there will be increased legitimacy of grant applications only using an ME diagnosis, which might result in studies with more homogeneous cohorts.

 

[Bob]

I think this is a good thing. As the IOM report noted, they are not equivalent diagnoses. From an advocacy standpoint it seems like exactly what we want, further distance from the harmful moniker and poor diagnostic criteria.

I think it depends on how everything pans out. We could easily lose the battle between ME and CFS. But, as @Scarecrow says, perhaps there's a bit of joined up thinking going on.

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.

 

[Bob]

And how many doctor/patient fist fights will be instigated by classifying ME as 'benign"?

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

 

[alex3619]

Perhaps it is a good thing then - it wasn't clearly classified along with PVFS before. But I sincerely doubt that there will be a glut of ME diagnoses in the wake of this, it'll probably just be business as usual.

I wonder if the example of autism could inform us here. I think under DSMIII it was either rare or not coded? I don't recall. Then under DSMIV it became easier to diagnose, and diagnoses proliferated at a far greater rate than anyone anticipated. It has always been presumed this was a rare disorder, they did not expect the massively increased rate of diagnosis.

So its possible that under some circumstances the accompanying diagnostic descriptions might be useful. Its not the codes, but the ancillary information that does this.

 

[worldbackwards]

I wonder if the example of autism could inform us here. I think under DSMIII it was either rare or not coded? I don't recall. Then under DSMIV it became easier to diagnose, and diagnoses proliferated at a far greater rate than anyone anticipated. It has always been presumed this was a rare disorder, they did not expect the massively increased rate of diagnosis.

So its possible that under some circumstances the accompanying diagnostic descriptions might be useful. Its not the codes, but the ancillary information that does this.

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?