ICD 10 CM - ME and CFS to be split

[Scarecrow]

@Sidereal The text in this screenshot from the WHO website is a bit on the small side but it shows that in addition to postviral fatigue syndrome and benign myalgic encephalomyelitis, chronic fatigue syndrome is also indexed under G93.3. What are your doctors ignoring?

http://apps.who.int/classifications/icd10/browse/2015/en#/G90-G99

 

[Sidereal]

What are your doctors ignoring?

I know it's in the ICD-10. But in routine clinical practice, most doctors dismiss it because they don't think it's a real disease or that I could possibly be as disabled as I say I am. You know the blank stare of sheer incomprehension and disbelief.

 

[Scarecrow]

But in routine clinical practice, most doctors dismiss it because they don't think it's a real disease or that I could possibly be as disabled as I say I am.

Do you mean they dismiss all three and maintain that you have a fatigue syndrome (F48) that is chronic?

 

[medfeb]

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?

At a meeting of the CDC group that handles proposals for changes to the ICD-10-CM a few years ago, attendees were asked if they ever saw the term "ME" being used in the medical records. The attendees were representatives of various medical organizations that use these codes on a daily basis and none of them had seen it used.

However, anecdotally, I have heard various patients say that they have gotten an ME diagnosis. So while apparently rare, it is possible.

 

[Sidereal]

Do you mean they dismiss all three and maintain that you have a fatigue syndrome (F48) that is chronic?

Nope, no diagnosis at all relating to fatigue. That actually suits me because having F48 would mean no investigations / specialist referrals for new or old symptoms ever again, abuse in emergency rooms etc. I have diagnoses relating to comorbidities like POTS and autoimmune conditions but those are relatively recent developments and cannot possibly explain my longstanding ME/CFS symptoms. Yet officially on paper it's as if ME/CFS doesn't exist in my life even though it accounts for the majority of my symptoms and disability. Anyway, I don't want to go too far off-topic.

 

[Dx Revision Watch]

I expect the following has already been covered in another thread, but in case readers of this thread are not aware:

In the International and country specific extensions of SNOMED CT (which is increasingly used across UK NHS health care systems), CFS is the lead term, with a list of Synonym terms:

SNOMED CT Browser:

http://browser.ihtsdotools.org/

International Edition

SCTID: 52702003

Chronic fatigue syndrome (disorder)

Benign myalgic encephalomyelitis
CFS - Chronic fatigue syndrome
Chronic fatigue syndrome
Iceland disease
ME - Myalgic encephalomyelitis
Myalgic encephalomyelitis
Myalgic encephalomyelitis syndrome

The list of Synonyms for the UK extension includes several additional terms to those in the International Edition, including Myalgic encephalopathy.

Note that for the latest release for the International edition, CFS is now listed under only one parent (Multisystem disorder). The Mental disorder parent for CFS has been retired for the July 2015 Release.

See Correspondence:
http://www.forward-me.org.uk/Reports/SNOMED.pdf


Also note that for the July 2015 International Release, PVFS is no longer listed as a child or subtype to CFS.

51771007 Postviral fatigue syndrome parents are

• Multisystem disorder (disorder)
• Post-viral disorder (disorder)

After (attribute) ≡ Viral disease (disorder)


It has been confirmed by the UK managers for the UK extension that these changes to the International edition will be reflected in the UK SNOMED CT extension, when the next UK release is published on October 1 and I shall be checking the browser to confirm this has been implemented.

It was also stated that the next release of the UK Clinical Terms Version 3 terminology product Xa01F would also reflect the changes to the SNOMED CT International Edition. In Xa01F, Chronic fatigue syndrome is currently classified as both a Neurological disorder and a Mental health disorder. This terminology system is scheduled for another release on September 17, 2015.

The International edition and country extensions of SNOMED CT have two releases per year, which are posted one to three months after each new International release has been issued. So the other country extensions may also absorb these changes.

There are browsers for the International Edition, Spain, UK, Denmark, Australia, Sweden, Netherlands, Uruguay, here:

http://browser.ihtsdotools.org/


IHTSDO (developers of SNOMED CT) and WHO are undertaking to work towards alignment between SNOMED CT content and the ICD-11 Common Ontology. These recent changes to the International SNOMED CT might potentially have implications for the proposed chapter(s) and parent class(es) and parent/child hierarchies for the three G93.3 ICD-10 legacy terms, for ICD-11.

 

[viggster]

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.

My first neurologist at an academic medical center gave me coded diagnoses of post-viral fatigue syndrome, and after an MRI showed 'reduced signal' at C3-C4 on my spinal column, another diagnosis of 'myelitis'. I most certainly have ME. So those other diagnoses do happen sometimes.