Updates on status of ICD-11 and changes to other classification and terminology systems

[Jonathan Edwards]

As I've said in previous posts, retiring an existing term entirely from ICD presents problems for legacy data and for comparability with data reported using various editions of ICD.

I find this all hard to follow. I see no particular need tp retire any terms. I am simply saying that if CFS means anything useful it means ME.

As far as I can see in any situation where people want to change the coding structure historic coding is going to end up clashing with the new. And if physicians have been using names illogically or inappropriately, however one is thinking about improving things then historic data are to going to be comparable anyway. Better to accept that the data are not going to be helpful rather than try to preserve it.

 

[Dx Revision Watch]

I find this all hard to follow. I see no particular need tp retire any terms. I am simply saying that if CFS means anything useful it means ME.

NCHS is proposing to delete Chronic fatigue syndrome NOS (currently under R53.82 in the Symptoms, signs chapter) and to add a new ICD-10-CM term, Chronic fatigue syndrome, under a proposed restructuring of the G93.3 terms, in the Diseases of the nervous system chapter.

(The 7 orgs have not made any recommendations for the Chronic fatigue syndrome NOS term or for adding Chronic fatigue syndrome under the G93.3 class due to a lack of stakeholder consensus in the past over how the Chronic fatigue syndrome NOS term should be handled in within the frameworks of various earlier proposals for changes to the code structure, submitted between 2011 and 2018.)

The whole point of this exercise is to avoid patients being coded to the "Chronic fatigue, unspecified" code, under which "Chronic fatigue syndrome NOS" currently sits. There is currently no term "Chronic fatigue syndrome" in any chapter of ICD-10-CM.

The original NCHS/CDC rationale for the current code structure (ie a CFS NOS under R53.82 but no CFS in either chapter location) was as follows:

"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."

Dr Wanda Jones: 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.

(It was further clarified that testing for a viral illness is not required to assign a code – that coding is based on the clinician’s judgment.)

As far as I can see in any situation where people want to change the coding structure historic coding is going to end up clashing with the new. And if physicians have been using names illogically or inappropriately, however one is thinking about improving things then historic data are to going to be comparable anyway. Better to accept that the data are not going to be helpful rather than try to preserve it.

The primary purpose of ICD-10 Tabular List and Index is collection of data, analysis and comparability of data between places and over time, not to function as a diagnostic manual.

This situation in the US is not the fault of the WHO. It arose because NCHS, who are responsible for the development, annual maintenance and updating of ICD-10-CM, bowed to pressure from Dr Bill Reeves, back in 2004.

NCHS had the option of following the WHO's ICD-10 (as Canada and Australia did) for the coding of the three terms, but chose not to.*

They have created this mess and it is their task to sort it, because they will be using ICD-10-CM for years before implementing ICD-11, or before implementing a US specific adaptation of ICD-11 (assuming the WHO will be granting copyright licenses for adaptations, which at the moment is not a given, as WHO does not like the variances that arise with modifications and is seeking to minimise the need for national adaptations of ICD-11).


This report of mine will bring you up to speed with ICD-11:

Update on classification and coding of PVFS, ME and CFS for ICD-11, November 2020:

https://dxrevisionwatch.files.wordp...fs-me-cfs-for-icd-11-version-7-nov-2020-1.pdf


*Around 25 member states have been licensed by the WHO to adapt the ICD-10 classification for the collection of morbidity (illness and disease) data and their category content and code structure varies from the WHO's unmodified ICD-10. Member states that have developed clinical modifications include: Canada, Germany, United States (also used by Belgium, Luxembourg and parts of Spain), Australia (also used by Ireland and Slovenia) and Thailand.

All modifications to ICD-10 must conform to WHO conventions for ICD.

 

[Medfeb]

[Edited to add:
I am speaking on my own behalf and not as a spokesman for the US orgs that submitted this proposal.]

Wow - lots of discussion on this.

Bottom line for me - the US ICD-10-CM is such a mess that there is no clean way to fix it that everyone will agree to. But it needs to be fixed because the US has effectively lost track of Americans with ME.

My perspective on the comments made
1. Regarding the need to plan for how ME cases coded as R53.82 will be accounted for in the new classification
The rationale for the original proposal submitted by the orgs was that we have effectively lost all those the cases of ME coded as R53.82. Those cases can not be readily located and counted in mortality and morbidity tracking separate from the symptom of "chronic fatigue, unspecified," they can not be isolated in research using EHR, etc. As it stands, they currently are not accounted for.

For this reason, its going to be very difficult to pull out and reassign the historic electronic R53,82 records that are ME separate from the records that are chronic fatigue, unspecified - across all US systems including those where just the code was used (lab reqs). As CDC discussed at a recent conference, you can't find those records without manually going through the charts. That's not likely to happen

But for current patients and their future electronic health records- and any new Long COVID patients - they will be separately coded from the start so that we don't continue to lose them

2. Regarding not retaining the term "Chronic fatigue syndrome, NOS"
When NCHS split out CFS to the symptom chapter, they intended ME to be used for proven viral cases and CFS to be used for anything else. They said "NOS" indicated "not specified as being due to a past viral infection."
But it was never appropriate to split CFS and ME based on viral versus non-viral triggers. Thus the term NOS was incorrect. It should have been CFS all along.
And as above, we ar

3. Regarding the US using Fukuda for CFS
Yes, the US did (past tense) use Fukuda for CFS but CDC started using IOM in 2017 and many other medical education providers have followed suit. Its not a clean cutover by any means as we don't have centralized control of this - e.g. there is no equivalent to NICE. But the clinical concept of CFS in the US as defined by Fukuda is dead as no major agencies or medical associations are actively teaching it as a separate disease. Nor IMO, would we want them to do that.

4. Regarding the call for ME and CFS to have separate codes
The ICD-10, ICD-11, and I believe SNOMED all use the same code for ME and CFS. How does that jibe with the calls here for the US ICD-10-CM to establish separate codes? And how would doctors be taught when to use which term?

5. Regarding adding the term ME/CFS
We have discussed this numerous times on this thread so I don't want to dive into that again. But I expect that if it were really against ICD rules to add that, NCHS would not have proposed it and will not implement it. But it's also very difficult to believe that WHO rules would disallow the addition of a term that is being used so extensively across the world.

6. Regarding the statement that there are two proposals - The organizations submitted a proposal in December 2020. NCHS then took that and made their own recommendation on how to address the situation. NCHS presented this in September as the only option being discussed. There are not two separate options being discussed and commented on at NCHS.

7. Addition of SEID
NCHS has said that SEID has to be added if US doctors are using the term. And last I checked, I saw one or two more minor clinical guidance/information providers using the term.
Others have stated that doctors and guidance providers should be told not to use that term. The US medical system is not centralized and that's not going to happen. But NCHS needs to specifically confirm that doctors are actually using this term at this point in time and not just historically when the term was initially being picked up

8. Regarding the orgs not putting the proposal out for public comment before submitting in December
This is the fourth time a proposal has been submitted by US organizations since 2011 to correct this intolerable situation in the US ICD coding of this disease. There has been extensive public feedback and discussion on all of these proposals and many of the comments being made now are not new. The issue is that the US coding is such a mess that no one proposal is going to address all stakeholder concerns.

Regarding getting public consultation before submitting ICD proposals, I don't remember Chapman/Dimmock putting their ICD-11 proposal out for public comment before submitting it.

 

[Dx Revision Watch]

...Regarding getting public consultation before submitting ICD proposals, I don't remember Chapman/Dimmock putting their ICD-11 proposal out for public comment before submitting it.

Not comparable and I think you know that.

Chapman & Dimmock submitted their March 2017 joint proposals for ICD-11 under the following declaration:

"Declarations: This submission has been prepared by Mary Dimmock and Suzy Chapman. Mary Dimmock serves on the Board of Solve ME/CFS Initiative and also works with other ME organizations. Suzy Chapman has no affiliations. This proposal has been submitted in personal capacities and not on behalf of any organizations. The authors declare no conflicts of interest."

Our March 2017 joint proposal, and several later proposals submitted in my name only, were all submitted in a personal capacity [1].

The 7 orgs' proposal is supported by several organisations, one of whom (#MEAction) presents itself as a grass roots organisation. Did #MEAction consult with its supporters?

#MEAction now has a multi-tiered, paid for membership scheme: https://www.meaction.net/membership-faq/

Were #MEAction's membership consulted?


SOLVE M.E. has a Community Advisory Council (CAC).

"The ME/CFS Community is powerful, smart, and resourceful. One way that Solve M.E. empowers and collaborates with the ME/CFS Community is through our Community Advisory Council (CAC).

"The Solve M.E. Community Advisory Council (CAC) is a volunteer working group providing guidance and recommendations on numerous Solve M.E. programs. Members of the CAC work with Solve M.E. staff on issues related to ME/CFS advocacy, education, and engagement, in addition to reviewing applications for funding through the EmPOWER M.E. micro grant program. The CAC serves as an inclusive partner platform to facilitate the input, dialogue, and collaborations with representatives of the ME/CFS community."

Was CAC consulted and invited to provide input into the proposals? Was the wider "ME/CFS community" consulted before the proposal was submitted last December?


We submitted to ICD-11 in a personal capacity - as any individuals are free to do - not as reps for organisations, some of which function as advocacy organisations and membership organisations and for which there is an expectation that their constituencies would be consulted.


1 ICD-11 Proposal Suzy Chapman, Mary Dimmock, March 27, 2017
https://dxrevisionwatch.files.wordp...al-g93-3-suzy-chapman-mary-dimmock-final2.pdf

 

[Dx Revision Watch]

4. Regarding the call for ME and CFS to have separate codes
The ICD-10, ICD-11, and I believe SNOMED all use the same code for ME and CFS. How does that jibe with the calls here for the US ICD-10-CM to establish separate codes? And how would doctors be taught when to use which term?

One of the NCHS's previous sets of alternative proposals for ICD-10-CM had recommended creating separate sub-codes for ME and CFS (September 2011). The September 2018 NCHS proposal had recommended creating four separate sub-codes for PVFS; ME; CFS, CFS NOS; and SEID. As long as ICD conventions are conformed to, that type of change would be permissible under the adaptation rules.

See Page 5 for screenshots of 2011 and 2018 NCHS proposals: https://dxrevisionwatch.files.wordp...n-postviral-and-related-fatigue-syndromes.pdf

Yes, it is the case that for SNOMED CT, CFS and the terms under Synonyms all take the same Concept code: SCTID: 52702003, although Postviral fatigue syndrome has been separately coded for since July 2016.

SNOMED CT US Edition maps CFS and its Synonyms terms to a choice of two ICD-10-CM codes: G93.3 or R53.82. (The differently coded for SNOMED CT Concept: Postviral fatigue syndrome remains mapped to ICD-10-CM's G93.3.)

5. Regarding adding the term ME/CFS
We have discussed this numerous times on this thread so I don't want to dive into that again. But I expect that if it were really against ICD rules to add that, NCHS would not have proposed it and will not implement it. But it's also very difficult to believe that WHO rules would disallow the addition of a term that is being used so extensively across the world.

I was very surprised that the alternative proposal by NCHS, as currently drafted, made it as far as being tabled on the agenda for discussion. There are multiple inconsistencies and ICD convention issues within it that should have been identified and addressed to prior to its being added to the agenda.

See Pages 3-8: https://dxrevisionwatch.files.wordp...n-postviral-and-related-fatigue-syndromes.pdf

If you have confidence that the WHO would approve the addition of a new sub-code title formed by conjoining two existing ICD entities and locating those existing ICD entities as inclusions under the new conjoined term, or that WHO would approve the addition of the proposed conjoined term as an inclusion term under the 8E49 category class, I suggest you submit this change to ICD-11 to see what the response of the WHO classifications team and the CSAC and MSAC committees is.

The issue is not whether the term Myalgic encephalomyelitis/chronic fatigue syndrome [ME/CFS] is in common use around the world. The issue is whether conjoining two existing ICD terms is valid under ICD conventions for unique ICD entities.

6. Regarding the statement that there are two proposals - The organizations submitted a proposal in December 2020. NCHS then took that and made their own recommendation on how to address the situation. NCHS presented this in September as the only option being discussed. There are not two separate options being discussed and commented on at NCHS.

But the petition is asking for support for the orgs' "basic" proposals. You also presented a set of slides at the meeting with the orgs' proposal set out. Are those who signed the petition or submitting feedback fully aware of which proposal is under consideration by NCHS?

7. Addition of SEID
NCHS has said that SEID has to be added if US doctors are using the term. And last I checked, I saw one or two more minor clinical guidance/information providers using the term.

See Page 2: https://dxrevisionwatch.files.wordp...n-postviral-and-related-fatigue-syndromes.pdf

 

[Medfeb]

Neither SOLVE M.E nor #MEAction has made that very clear in their proposal and petition background materials. I think it likely that many of those who have signed the petition will be under the impression that they are signing in support of the 7 orgs' original proposal - not the alternative proposal presented by NCHS. You also presented a set of slides at the meeting with the orgs' proposal set out.

The multiple communications on this were very clear - the orgs proposal was primarily about getting ME/CFS added and changing the lead term to accommodate non-viral triggers. We then acknowledged that NCHS had added other recommendations onto the final option discussed. We also acknowledged that some of these would be controversial (e.g. SEID) and asked that people at least support the part of the discussed option that the orgs had submitted - the addition of the term ME/CFS.

And yes, that 2018 proposal did have separate codes for ME and CFS. And yet, that proposal was sunk, in significant part due to objections from advocates to the addition of SEID.

 

[Dx Revision Watch]

The multiple communications on this were very clear - the orgs proposal was primarily about getting ME/CFS added and changing the lead term to accommodate non-viral triggers. We then acknowledged that NCHS had added other recommendations onto the final option discussed. We also acknowledged that some of these would be controversial (e.g. SEID) and asked that people at least support the part of the discussed option that the orgs had submitted - the addition of the term ME/CFS.

I note that the most recent FAQ is nearly 6 A4 pages long: https://docs.google.com/document/d/1Hf16TpmS87bbMwRY5Y8FG9vuHRjX7CF5/edit

That's a lot of information for people to digest before signing a petition.

 

[Dx Revision Watch]

1. Regarding the need to plan for how ME cases coded as R53.82 will be accounted for in the new classification

The rationale for the original proposal submitted by the orgs was that we have effectively lost all those the cases of ME coded as R53.82. Those cases can not be readily located and counted in mortality and morbidity tracking separate from the symptom of "chronic fatigue, unspecified," they can not be isolated in research using EHR, etc. As it stands, they currently are not accounted for.

For this reason, its going to be very difficult to pull out and reassign the historic electronic R53,82 records that are ME separate from the records that are chronic fatigue, unspecified - across all US systems including those where just the code was used (lab reqs). As CDC discussed at a recent conference, you can't find those records without manually going through the charts. That's not likely to happen

But for current patients and their future electronic health records- and any new Long COVID patients - they will be separately coded from the start so that we don't continue to lose them

So where does that leave all the thousands of US patients who currently have a diagnosis of Chronic fatigue syndrome NOS if NCHS Director were to approve the NCHS's revised proposal and delete Chronic fatigue syndrome NOS from under R53.82, but without relocating the term, Chronic fatigue syndrome NOS, under Chronic fatigue syndrome under the proposed restructured G93.3 block?

I don't consider the ICD term, "Chronic fatigue syndrome" a substitute for the absence of "Chronic fatigue syndrome NOS" unless NCHS plans a cross-walk or mapping. Their proposal did not discuss the mapping of R53.82 to proposed new sub-code, G93.32.

A bit of an own goal, if, as a result of the 7 orgs' original submission, these patients are left orphaned under Chronic fatigue, unspecified. Are these patients already encumbered with the R53.82 code prepared to become collateral damage?

How does NCHS plan to safeguard these patients?

 

[Dx Revision Watch]

4. Regarding the call for ME and CFS to have separate codes
The ICD-10, ICD-11, and I believe SNOMED all use the same code for ME and CFS. How does that jibe with the calls here for the US ICD-10-CM to establish separate codes? And how would doctors be taught when to use which term?

I would remind folk that on March 30, 2017, Lily Chu on behalf of the named Board Members of the IACFS/ME submitted to ICD-11 for creation of three separate ICD-11 concept title codes for:

Postviral fatigue syndrome
Chronic fatigue syndrome
Myalgic encephalomyelitis


Extract from the IACFS/ME's March 2017 proposal:

https://icd.who.int/dev11/proposals...lGroupId=21862f11-3c20-4cb0-a33a-8ab90791f9a8


"Rationale corresponding to each point in the proposal. Names in parentheses correspond to references.

"[1] and [2]:

"ME, CFS, and PVFS may differ from each other in terms of their symptoms, features, potential etiologies, prognoses, and treatment. Consequently, the three entities should be treated separately as they have have been in past editions of the ICD codes. We support the decision to have a separate code for each of the different conditions."

[Extract ends]​

"Consequently, the three entities should be treated separately as they have have been in past editions of the ICD codes."

That bit isn't correct - not if IACFS/ME were referring to the WHO's ICD-10. So I still struggle to comprehend what IACFS/ME's understanding was regarding "past editions of ICD codes". But evidently IACFS/ME were comfortable, in 2017, with requesting separate codes for all three terms for ICD-11.

The Chapman & Dimmock joint proposal submitted a few days before the IACFS/ME proposal also requested assigning separate codes for Myalgic encephalomyelitis and Chronic fatigue syndrome and suggested brief draft description texts for both terms [1].

On two occasions (September 2011 and September 2018), NCHS had recommended assigning separate sub-codes for ME and CFS; and for the September 2018 proposals, four separate sub-codes for PVFS; ME; CFS, CFS NOS; and SEID.


1 ICD-11 Proposal Suzy Chapman, Mary Dimmock, March 27, 2017
https://dxrevisionwatch.files.wordp...al-g93-3-suzy-chapman-mary-dimmock-final2.pdf

 

[Dx Revision Watch]

[Edited to add:
I am speaking on my own behalf and not as a spokesman for the US orgs that submitted this proposal.]

(...)

4. Regarding the call for ME and CFS to have separate codes
The ICD-10, ICD-11, and I believe SNOMED all use the same code for ME and CFS. How does that jibe with the calls here for the US ICD-10-CM to establish separate codes? And how would doctors be taught when to use which term?

But one might equally ask: How would doctors be taught when to use which term if all these terms were to be coded to the same sub-code, as per NCHS's revision of the 7 orgs' proposal:


Extract NCHS proposal, September 2021:

G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome [ME/CFS] (ICD-10-CM convention for acronyms)
Chronic fatigue syndrome
Myalgic encephalomyelitis

Systemic exertion intolerance disease [SEID] (proposed Index term)

 

[Dx Revision Watch]

 

[Dx Revision Watch]

Final reminder: if you are planning to submit feedback on the proposals of the 7 US orgs and the alternative proposals presented by NCHS*, the deadline for receipt of comments is by tomorrow, Monday, November 15.

Comments should be sent to this email address:

nchsicd10CM@cdc.gov


*https://www.cdc.gov/nchs/icd/Sept2021-TopicPacket.pdf
Page 169 - 172

 

[Medfeb]

Worth noting a few of the objections being voiced...

ME-International's proposal/comment calls for a) ME to only be diagnosed using the ME-ICC and b) the term CFS to be left in the symptoms chapter at R53.82 where it's equated to "chronic fatigue, unspecified." Then, if patients meet the IOM criteria or Canadian Consensus criteria but not the ME-ICC, it calls for them to be diagnosed with CFS and given the code R53.82. While the submission does not mention the 2021 NICE ME/CFS criteria, presumably the same logic would apply

This is from their submission (p. 7)

Those who fit the ME/CFS criteria as defined in either the Canadian Consensus Criteria or the IOM/NAM report (as shown on the CDC website) also need to be thoroughly screened using the ME IC Primer. If they fit the ME-ICC criteria they need to be given the ME diagnosis and the G93.3 label. If they do not have ME as per the ICC they would be given the CFS label and the R53.82 code.​

This submission also rejects the addition of a code for the term ME/CFS.

So given the US uses the IOM criteria, this submission is calling for US patients diagnosed with ME/CFS to continue being dumped into and lost in the "chronic fatigue, unspecified" bucket unless the patient can convince the doctor to rediagnose them with the ME-ICC criteria instead and the patient meets the ME-ICC.

For its part, the Nightingale Research Foundation objects to this proposal in part because ME can only ever be triggered by an enterovirus. Lots of research countering that one.

[edited for clarity]

 

[ME/CFS Skeptic]

Also to clarify: The M.E Vereniging listed is not the main Dutch ME/CVS Vereniging that has hundreds of members. It's mostly run by one person and was recently criticized for spreading misinformation on COVID-19. Hope that the other organizations realize who they associate themselves with.

 

[ME/CFS Skeptic]

Those who fit the ME/CFS criteria as defined in either the Canadian Consensus Criteria or the IOM/NAM report (as shown on the CDC website) also need to be thoroughly screened using the ME IC Primer

I don't know one doctor that uses the ICC in Belgium, not even De Meirleir who was one of the authors.

So if this proposal was to be adopted pretty much all ME/CFS patients in Belgium, even those who meet the ICC, would be listed as having chronic fatigue. I guess the situation is rather similar in the US, where there are only a handful of specialists that are too expensive for many patients.

 

[Hoopoe]

ME-International's proposal/comment calls for a) ME to only be diagnosed using the ME-ICC and b) the term CFS to be left in the symptoms chapter at R53.82 where it's equated to "chronic fatigue, unspecified."

I don't think this makes sense. Between not meeting ICC criteria and having a health problem that is accurately described with "chronic fatigue, unspecified" is a lot of ground.

 

[Medfeb]

So if this proposal was to be adopted pretty much all ME/CFS patients in Belgium, even those who meet the ICC, would be listed as having chronic fatigue. I guess the situation is rather similar in the US, where there are only a handful of specialists that are too expensive for many patients.

Yes, it is similar. Less than 2 dozen docs for the entire country. In addition to the expense, waiting lists are long (can be years), and patients would typically have to fly to go see them - if they even know those doctors exist.

So the vast majority of patients are being seen by their local GPs.

 

[Colleen Steckel]

But perhaps one could also argue that ME described by Ramsay or the later London criteria are not the same as ME defined by the ICC. And CFS defined by Holmes et al. is very different from that of Sharpe et al. The differences between case definitions within a label, whether CFS or ME, can sometimes be larger than those between them.

I absolutely agree that there is a case for ME described by Ramsay not being identical to the ICC. Also agree that other criteria are not identical either. I think that is the point of not lumping all under a new ICD code.

We have some good papers out by Jason & Twisk as well as this paper from Lim & Son (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7391812/) that brings some clarity about how these different criteria relate to each other and how they are different. Lim & Son separate into "ME" & "CFS" categories. The chart shows which criteria fall under each of those but here is the explanation: Important note: ME/CFS here is NOT what is being referred to in the new ICD code - it is the Canadian Consensus Criteria. The ICD code suggestion for ME/CFS being put into G93.32 refers to what is on the CDC website labeled ME/CFS. That is actually SEID which is in the CFS category.

"The feature of these categories is linked to the suggested etiologies: ME by a viral infection, ME/CFS by a neuro-inflammatory disorder, CFS with unknown cause, and SEID by multisystemic effects [5, 20, 24, 35]. The compulsory symptoms in the ME and ME/CFS criteria stressed neuroinflammation, whereas the symptoms for CFS and SEID focused more on fatigue or malaise [5, 20, 24, 35]. While the ME criteria required the presence of an infective agent, the CFS criteria required the conditions of symptoms associated with fatigue (e.g., duration of the illness)."

What is lacking by focusing on the Ramsay criteria is any way for patients to get testing/treatment. That's where the #MEICPrimer comes in. I don't think getting an "ICC" diagnosis or diagnosis under ME/CFS or CFS criteria is the end of the process. It is the beginning of the process. The #MEICPrimer offers good guidance on how to verify a diagnosis. That includes enterovirus & other viral testing, brain blood flow scans, NK cell function testing, etc. It also incudes a LOT that helps rule out other causes for symptoms than can mislead doctors down a road that doesn't offer options for treatable conditions. So if we can focus more on what path gets patients the care they need, I think it is a way forward. That is the essence of the concerns we have for the NCHS proposal of lumping all together. By putting patients who don't have PEM in the same label as those who do require PEM we are going backwards.

 

[Colleen Steckel]

@Colleen Steckel , as we have discussed before, here in the US, essentially no one was being diagnosed with ME before the creation of the diagnosis of CFS in the late 1980’s. The various definitions, rather than delineating different diseases represent a variety of efforts to diagnose what Dr Bell has called “the disease of 1000 names”. None of the definitions are sufficiently scientifically sound. (I know that you feel that ME-ICC is, but many people disagree.)

We need better criteria that are scientifically based. Many of us have called for years for NIH to fund a colloquium of experienced clinicians and researchers to come up with better criteria.

In the meanwhile, we have an ever increasing number of people coming under the ME/CFS umbrella who are not being coded and counted. Primary care physicians need a straightforward way to code the patients that they see. We need better statistics indicating how many of us there are and what our disease progression looks like.

Additionally, as an African American, I know that the physicians who treat our community - excellent but overextended medical professionals - need a straightforward and logical way to code their patients. Those patients need an inclusive community where they can learn about their disease. Coding will be a big step forward in this effort. As you know, in the US, community-based studies have shown that African Americans are at least as likely as the larger community to have this disease. My guess would be that you can’t name 20. This is a problem. Straightforward coding will help in bringing members of underserved communities out of the shadows to be correctly counted.

We need a serious effort to straighten out the issues around definitions. In my opinion, any definition that does not focus on PEM is useless. But those problems should not stand in the way of coding and counting those who live with our disease. This is a step forward that is badly needed.

I understand the IOM report was the government's response to come up with better criteria. IMO the International Consensus Criteria already accomplished that in 2011 and I am glad to see more and more researchers and nonprofits/charities recognizing the value of what the ICC and the #MEICPrimer offer.

As for the coding, I think we agree that the current situation should not stand in the way of coding. But what NCHS decided to do, I think, goes against the original intended purpose and as presented to lump all these varying patient populations together is the wrong approach. What was presented by the orgs and what the NCHS decided to do with that request are two very different things. ME worldwide is G93.3. I think that is an important code to maintain.

 

[Jonathan Edwards]

The #MEICPrimer offers good guidance on how to verify a diagnosis. That includes enterovirus & other viral testing, brain blood flow scans, NK cell function testing, etc.

But these tests have no proven value for diagnosis of any of the proposed categories.
This stuff is make believe and I think it is important that both physicians and patients get clear about that. Diagnostic categories in other areas are not dependent on wishful thinking tests that private labs can get whatever results they like to.

The really important move forward for ME/CFS is to get in line with real medicine based on reliable evidence. These things just drag people back into fairy tale medicine. ME may have an immunological basis but as an immunologist I want to see some bona fide immunology before I let that colour my view of diagnosis.