The use of the labels ME, CFS, ME/CFS

Yes, we have a disease and forty years has shown it is not the same as his concept of chronic fatigue. It will not just disappear.

 

I've never heard of "B Class women" before. Who decides what class a person is? And who gave them that power?

 

https://www.youtube.com/watch?v=AW0x9_Q8qbo

 

I think these were the same people Dr Nixon at Charing Cross thought he was treating. These were 4 star people with 5 star ambitions... Mainly women funnily enough.

 

I get confused with all these threads. That sounded like King's College syndrome but then I realised that is 2 star people with 5 star ambitions.

 

I keep looking at Oslers Web. I recently saw a comment very similar to this by one of the US people in 1989. I think it was Straus, but it might have been someone else.

 

A second Rapid Response from Dr O'Leary, in response to the comments in the Rapid Response by Andrea Martell (28 August 2020):

BMJ Rapid Response:

Re: Management of post-acute covid-19 in primary care, 31 August 2020, Diane O'Leary

https://bmj.com/content/370/bmj.m3026/rr-6


In this second response, Dr O'Leary writes:

(My highlighting)


Dear Editor,

As someone who has written and spoken about ME/CFS across the professional-patient divide, it is clear to me that the two communities often misunderstand one another. While I’m saddened to know that my original letter has led to an objection from the patient community, the prejudice and misunderstanding that Ms. Martell sees in my letter is a misreading.

Ms. Martell is objecting to the suggestion that patients diagnosed with CFS are suffering from a psychiatric condition rather than a biomedical disease. That is not a claim I have made or implied or in any way supported in my letter. In fact, my research has helped clarify exactly why it is unscientific,[1] [2] and unethical,[3] to trust that patients diagnosed with CFS do not suffer from a biomedical disease.

As Ms. Martell astutely points out, it is impossible for clinicians make productive use of the “alphabet soup” of labels related to ME/CFS. My letter informs clinicians about a crisp and simple terminological distinction that’s become firm in research and health policy in the last five years, too recently to be reflected in the coding system.

The patient community has long insisted that because the construct of CFS is generally researched and managed in psychiatry, it should be retired in favor of ME or ME/CFS. In 2015 that perspective was embraced by the profession through reports from NIH and IOM, then a detailed examination by AHRQ,[4] all of which reject use of the construct of CFS. The CDC then retired the term “CFS”, stating now that “ME/CFS is a biological illness, not a psychologic disorder”.[5] Government health organizations in Sweden, Denmark and the UK have also shifted to “ME/CFS”. This clarity of terms facilitated a massive increase in funding for research on postviral disease in the years just before the pandemic.

What’s needed in care for long Covid is what’s needed in care for ME/CFS: consistent terminology that forces clinicians to be clear about the difference between psychological and biomedical explanations for postviral symptoms. The distinction between CFS and ME/CFS now serves that purpose for health organizations and researchers across the globe. Patient care would improve if clinicians adopted it as well etc.

Full text and references​

---------------------------------------


The statement: "My letter informs clinicians about a crisp and simple terminological distinction that’s become firm in research and health policy in the last five years, too recently to be reflected in the coding system." is a misconception.


The WHO's Dr Robert Jakob confirmed to me in June 2015, via a conference call, that the WHO/ICD Revision Steering Group were familiar with recently published US reports.

He also confirmed that there was no proposal to classify any of the three G93.3 legacy terms under the Mental, behavioural and neurodevelopmental disorders chapter for ICD-11.

He invited me and a colleague to provide resource materials to inform the revision process and for forwarding on to the Topic Advisory Group for Neurology; materials and a literature list were provided to ICD Revision in July 2015. These had included a copy of the IOM Panel's Report.

A literature review was carried out by the WHO from early 2017 to October 2018.

In November 2018, WHO/ICD Revision and the WHO MSAC and CSAC committees (cognisant of the IOM Panel's Report and the AHRQ Evidence Review) agreed that the ICD-10 legacy terms: Chronic fatigue syndrome; and Benign myalgic encephalomyelitis would continue to be classified under the Diseases of the nervous system chapter for ICD-11 as separate terms under the legacy Concept Title: Postviral fatigue syndrome.

There are a number of historical and alternative terms listed under Synonyms/Index terms. But this list does not include the terms: "ME/CFS" or "Benign myalgic encephalomyelitis/chronic fatigue syndrome". All the terms listed as Index terms are searchable in the electronic Index (the Search Tool) and all these terms have been indexed to the 8E49 target code.


In May 2019, the World Health Assembly approved a Resolution to adopt ICD-11, with its endorsement coming into effect from January 01, 2022 (which is the earliest date from which member states can begin reporting data using the new ICD-11 code sets, when their health agencies are ready to implement the new edition).


Understand then that after carrying out a literature review (which had included the IOM Panel's February 2015 Report) the WHO decided that all three terms would remain under the Neurological chapter, as three separate terms, and that this decision was supported by the MSAC and CSAC committees.

In February 2020, the WHO stated: "The ICD-11 codes are now frozen. Proposed changes to the classification that would result in a code change are not permitted."


ICD Conventions: It needs to be understood that the ICD classificatory convention is that conjoined terms such as "CFS/ME"; "ME/CFS" or "Benign myalgic encephalomyelitis/chronic fatigue syndrome" cannot be used in either the ICD Tabular List or the Index.

Neither does the US's ICD-10-CM (which is updated annually by NCHS/CDC) use "ME/CFS" or "Benign myalgic encephalomyelitis/chronic fatigue syndrome" within ICD-10-CM's Tabular List or Index. Neither does the final update for the WHO's international edition of ICD-10: Version 2019 (which was released in January 2020, five years after publication of the IOM Panel's Report).

In September 2018, NCHS/CDC discussed proposals for relocating Chronic fatigue syndrome (currently classified in ICD-10-CM Tabular List as R53.82 chronic fatigue syndrome NOS) back under the G93.3 Concept Title.

None of the options under discussion at that public meeting proposed potentially classifying the conjoined term, "ME/CFS" or the conjoined term "Benign myalgic encephalomyelitis/chronic fatigue syndrome" within a future update of ICD-10-CM, either as a discretely code for term or as a specified inclusion term under an existing term.


In fact, reclassifying two existing ICD terms as conjoined terms would present difficulties for the WHO with legacy data* in the case of ICD-10-CM and ICD-10, but also for ICD-11, due to member states implementing ICD-11 according to their own schedules, as there will be no WHO mandatory implementation date.

Global update of the new edition will be a patchy process over a number of years. Some member states may decide not to migrate to ICD-11 for morbidity statistics. For a period of time, the WHO will be collecting data reported using the new ICD-11 code sets, ICD-10 Version: 2019, earlier versions of ICD-10, and the various country specific modifications of ICD-10. Some low resource countries are still using ICD-9.

The point being, there will be no overnight global adoption of ICD-11 and backward compatibility has been built into the new edition.

*Potential data loss, data aggregation and disaggregation issues and code mapping issues between ICD-11 and other classification/terminology systems that are mapped to ICD, such as ICPC-2, ICPC-3, SNOMED CT, would result from the loss of currently discretely listed terms.


The bottom line is this: whatever terms might be used in clinical settings, in research studies, by NHS England, in NHS services, by NICE, by CDC and other US federal health agencies, or by the health agencies in other member states, the WHO will not classify both "Chronic fatigue syndrome" and "Benign myalgic encephalomyelitis/chronic fatigue syndrome" or "Chronic fatigue syndrome" and "ME/CFS" in ICD because it would not comply with ICD Conventions and their requirements for data reporting.

To assert as Dr O'Leary had done, that

"My letter informs clinicians about a crisp and simple terminological distinction that’s become firm in research and health policy in the last five years, too recently to be reflected in the coding system."

shows a lack of understanding of how the International Statistical Classification of Diseases functions and its conventions (which all national modifications are expected to comply with).

It has nothing to do with any change that has happened "...in the last five years, too recently to be reflected in the coding system."


The same conventions apply to SNOMED CT, which is now the mandatory terminology system for use at the point of care in NHS England primary and secondary care settings and is mapped to ICD-10 and to ICD-10-CM. (SNOMED CT is also used in the US, Australia and a number of other countries.)

And for SNOMED CT UK Edition, the lead term (known as the "Fully Specified Name" and "Preferred term" is "Chronic fatigue syndrome", with 8 additional terms designated as "Acceptable" in the National Health Service realm language reference set (clinical part), which include "Benign myalgic encephalomyelitis" and "Myalgic encephalomyelitis".


Note also that in her post on this thread, Dr O'Leary has said:

No, that is not what I have said, nor have I implied "that because people have been conflating the disease with a psych condition for years, we should all keep doing that?"

What I have done in my earlier post and in this post is to provide clarity and facts, as they pertain to WHO ICD conventions and to SNOMED CT.

I put forward no opinion.

If asked for my opinion it is this: the Recommendations in the proposals submitted in March 2017 by Chapman & Dimmock recommended that "Myalgic encephalomyelitis" and "Chronic fatigue syndrome" should both be coded as Concept Titles and be assigned separate codes.


Additionally, in indexing Chronic fatigue syndrome to G93.3, ICD-10 does not specify whether it views the term as a synonym, sub-entity or "best coding guess" to Postviral fatigue syndrome or to Benign myalgic encephalomyelitis.

Nor does ICD-10 specify how it views the relationship between Postviral fatigue syndrome and Benign myalgic encephalomyelitis.

Nor does ICD-10 provide any definitions or descriptive texts for any of the three terms or provide any guidance for coders within the ICD-10 Tabular List on how the three terms should be applied or differentiated.

Likewise for ICD-11, no description texts or definitions have been populated for any of the three terms and ICD-11 does not specify how it views the relationship between the two Specified Inclusion terms: Benign myalgic encephalomyelitis; and Chronic fatigue syndrome and the 8E49 Concept Title: Postviral fatigue syndrome, to which both terms are coded.

Extract from the ICD-11 Reference Guide:

https://icd.who.int/icd11refguide/en/index.html#2.02ICD-11conventions|code-structure|c2-2-1

(My highlighting)

2.2.2 Inclusions
Within the coded categories there are typically other optional diagnostic terms. These are known as ‘inclusion terms’ and are given, in addition to the title, as examples of the diagnostic statements to be classified to that category. They may refer to different conditions or be synonyms. They are not a sub-classification of the category.

Inclusion terms are listed primarily as a guide to the content of the category, in addition to the descriptions. Many of the items listed relate to important or common terms belonging to the category. Others are borderline conditions or sites listed to distinguish the boundary between one subcategory and another. The lists of inclusion terms are by no means exhaustive.

Alternative names of diagnostic entities (synonyms) are included and shown in the electronic coding tool and the Alphabetic Index.​

----------------------------------

I hope these notes will serve to clarify ICD conventions.


Suzy Chapman, Dx Revision Watch

Edited to insert additional text.

 

I have discussed my concerns about statements made in two Rapid Responses to BMJ Management of post-acute Covid-19 in primary care, 2020, Greenhalgh et al. with Sonya Chowdhury, in her capacity as a Forward-ME member organisation rep and provided a copy of the text in Post #62.

 

Suzie can you clarify the purpose of these efforts? Wouldn't it be good for ME patients if all the clinicians stopped using the term CFS? This change at NIH, IOM, CDC and NICE is profoundly productive for patients. I'm having such a hard time understanding why you would want to fight to keep this term in use?

 

Those who have taken the time to read and digest Post #42 and Post #62 will note that at no point have I said or implied that I would want to fight to keep the term "Chronic fatigue syndrome" in use.

Once again, please do not put words into my mouth or attempt to build a straw man argument.


Both posts set out the classificatory conventions for ICD.

As I have already said, ICD-10 Version 2019, which was published in January 2020, will be the last update for ICD-10. It will not be changed, other than to correct technical errors, typos or to add important new viruses.

The ICD-11 code sets are now frozen.

I have now set out twice why the WHO cannot use a conjoined term like "[Benign] myalgic encephalomyelitis/chronic fatigue syndrome" or "ME/CFS" within ICD.

I do not intend to set this out a third time.


ICD–10 and ICD-11 have standardised ways of presenting content which also apply to national modifications of the WHO's International Editions.

Information on ICD conventions; on the use of conjoined terms; that categories are mutually exclusive; and the requirements for data reporting and for legacy data analysis are fact - not my opinion.

That the WHO and the ICD-11 MSAC and CSAC committees have already agreed that for the (now frozen) ICD-11 code sets, all three ICD-10 legacy terms will be retained for ICD-11 and that none of the ICD-10 legacy terms is being retired for ICD-11 is fact - not my opinion.


I would suggest that if anyone wishes to challenge the WHO on their decisions for the three ICD-10 legacy terms - decisions that are supported by the MSAC and CSAC committees, they prepare and submit a formal proposal for the retirement of the entity, "8E49 Chronic fatigue syndrome", supported by a rationale.

Note that Proposals with impact on the statistics would need to include a description or analysis of the resulting impact on data collection.

Proposals that suggest adding new entities (and the proposed addition of "[Benign] myalgic encephalomyelitis/Chronic fatigue syndrome" would qualify as addition of a new entity) must include a description of the proposed new entity, and a description or analysis of the resulting impact on data collection.

If the submitter were proposing that existing entity, "84E9 Chronic fatigue syndrome" should be moved to another location within the classification, and that existing entity "8E49 Benign myalgic encephalomyelitis" be replaced with new entity, "[Benign] myalgic encephalomyelitis/Chronic fatigue syndrome" again, a description of the proposed new entity and how coders should differentiate the proposed new entity from "Chronic fatigue syndrome", and a description or analysis of the resulting impact on ICD statistics would need to be included.

But as I have already pointed out three times now, ICD categories are mutually exclusive and conjoined entities within ICD are not permitted.


The guidance for submitting proposals can be found here in the ICD-11 Reference Guide:

https://icd.who.int/icd11refguide/e...1UpdatingandMaintenance|updating-cycle|c3-8-2

3.8 Annex: ICD-11 Updating and Maintenance

See sections:

3.8.1 Background
3.8.2 Updating Cycle
3.8.3 Types of proposals for ICD-11-MMS maintenance

3.8.4 Proposal completeness

Any individual can submit a proposal for an update to the ICD. Proposals shall be provided in the format of a short (approximately 500-words) explanation with references to underpinning literature and evidence (publications in peer reviewed journals, or in official meetings of WHO, its CC or NGO in official relationships). The proposal shall also visualize the changes in the position and address potential impact on entities outside the proposal.

• The author has registered with full name and affiliation and declared a possible conflict of interest.
• All proposals must have a clearly written and compelling rationale, with citations to establish the proposals’ evidence base.
• Proposals that suggest adding entities must have a description, and a description of the entity. This ensures the correct placement in the foundation. The rationale must have a scientific background, with references to publications in peer reviewed journals, or in official meetings of WHO, its CC or NGO in official relationships.
• Proposals for new codes should include information about how the case would be coded if the proposed new code is not accepted.
• Proposals with impact on the statistics must include a description or analysis of the resulting impact.
• Proposals suggesting rule changes must come with an impact analysis.
• An incomplete proposal will be returned to the author.
• The proposal mechanism will not allow submitting proposals without rationale or with missing description or definition, adequate to process the proposal.

3.8.5 Proposal Timelines
3.8.6 Proposal Workflow
3.8.7 Changes that cannot be done during the normal updating process

-----------------------------------------------------------------------------------------


Suzy Chapman, Dx Revision Watch

 

As always, your knowledge of coding far exceeds mine, Suzy, and I actually don't have any arguments against any of the points you've been making. Coding is a reflection of practice though. It does not dictate practice. So while everything you're saying is true, I'm still not clear what conclusion we should draw from it.

My BMJ letter basically says clinicians should use these terms in the way that's recently become standard in health policy and research - where CFS is the Sharpe/Wessely psych construct that's been rejected by the US, and ME/CFS is the biomedical disease that's now getting so much attention in research.

I think you don't actually disagree with that. Given that this use of terms has been a good thing for ME patients, seems like it might be good for the ME community to support it.

 

These are the conclusions to be drawn from Post #42 and #62:

a) that WHO has standardised ways of presenting content within ICD-10 and ICD-11 which also apply to clinical modifications of ICD (also known as "national modifications" or "country modifications"), for example, ICD-10-CM, ICD-10-CA, ICD-10-GM, ICD-10-AM);

b) that WHO has coding conventions which also apply to clinical modifications of ICD;

c) that categories within ICD are mutually exclusive;

d) that the ICD coding convention is that conjoined terms cannot be used;

e) that irrespective of how disease/disorder nomenclature may be being used in practice, in order to maintain standardisation across the various versions of ICD, conform to ICD coding conventions and to the WHO's requirements for data analysis and backward compatibility and comparability, ICD cannot accommodate the addition of historically discretely listed terms joined together to form a new composite term.


After January 01, 2020, member states will be reporting morbidity data using ICD-9 (in a small number of countries); using the International edition of ICD-10 (which may be Version: 2015, 2016 or 2019); using a country specific clinical modification; or will be early implementers of the new ICD-11 code sets, where a country's health system is ready to migrate to the new edition.

ICD-10 and ICD-11 are designed to be integrable with other classification and terminology systems and forward and backward mapping tables are provided for ICD-10 to ICD-11; SNOMED CT to ICD-10; SNOMED CT to ICD-11; ICD-10 to ICPC-2 (and are in development for ICD-11 to ICPC-3).

Having the term "Chronic fatigue syndrome" used in practice for a different diagnostic construct alongside the term "Myalgic encephalomyelitis/Chronic fatigue syndrome" would create code mapping difficulties, too, for those countries whose health systems use ICD-10 alongside ICPC-2, or use ICD-10 in conjunction with the SNOMED CT terminology system.



The conjoined terms, "CFS/ME" and "Chronic fatigue syndrome/myalgic encephalomyelitis" have been in use, clinically, within NHS England since the pilot "CFS/ME" clinics were rolled out in 2006 and the NICE CG53 guideline published in 2007. The 2002 Report of the CFS/ME Working Group also used the composite term "CFS/ME" throughout its Report.

But for NHS England Data Sets and for statistical reporting to the WHO, the "target code" remains G93.3 Postviral fatigue syndrome, irrespective of which term a clinician or a coder enters into the electronic patient record, because all three terms are discretely classified in ICD-10 and direct the coder to G93.3, which is known as the "target code".


Dr O'Leary has said "Coding is a reflection of practice though. It does not dictate practice."

Not necessarily.

In October, the new IAPT Data Set Version 2.0 is being rolled out. (Data Set v2.0 had been intended to implement in April but has been postponed to October 01, due to Covid-19.)

For Data Set v2.0, the term being used for CFS, ME, CFS/ME, ME/CFS is "Chronic Fatigue Syndromes/ Myalgic Encephalopathy (ME)"* and the "target code" for IAPT data reporting is G93.3 Postviral fatigue syndrome.

See screenshot: https://dxrevisionwatch.files.wordpress.com/2020/07/revised-iapt-3.3-mapping-ssd-for-october.png

Source: IAPT Spreadsheet file: https://digital.nhs.uk/binaries/con...apt_v2_terminology_mapping_guidance_v3.3.xlsx

*Note that "Myalgic encephalopathy" (the ME Association's preferred term) is designated as an "Acceptable" term in the SNOMED CT UK Edition and is cross mapped to ICD-10's G93.3.


As readers of my reports will be aware, back in November, IAPT leads submitted a request to NHS Digital for a new Concept code for "Somatic symptom disorder" to be added to the SNOMED CT UK Edition in order that IAPT could use the term "SSD" in its new Data Set v2.0.

This request was forwarded on by NHS Digital to SNOMED International for discussion by their senior terminology leads. IAPT leads have requested the addition of "Somatic symptom disorder" for addition to SNOMED CT because NHS services can use both ICD-10 codes and SNOMED CT terminology codes, where a code is absent in ICD-10 - and there is no code for SSD in ICD-10. A large number of new codes associated with IAPT service provision have already been added to SNOMED CT UK Edition.

IAPT leads want to replace the current Data Set v1.5 terminology, "MUS - not otherwise specified" (mapped to ICD-10 F45.9 Somatoform disorder, unspecified) for its new Data Set v2.0 and associated literature with a new SNOMED CT Concept code for "Somatic symptom disorder" because it considers the term "MUS - not otherwise specified" is no longer appropriate for the IAPT cohort to which the term was previously assigned in Data Set v1.5.

If SNOMED International does approve this request, the SSD term will be added to the SNOMED CT International Edition and then incorporated into all the various country editions, including the US edition. (SNOMED International has the option of approving this request solely for addition to the UK Edition but that would be an anomalous, given that the DSM-5 SSD term has yet to be added to the US edition.)

If approved, this might be viewed as an example of a coding change reflecting [IAPT] practice.

Approval of addition of the SSD term to SNOMED CT and the IAPT Data Set v2.0 might potentially result in embedding of the SSD term into other NHS clinical settings beyond the realm of IAPT, which would also be detrimental to diverse patient populations - so I have robustly opposed this request.


With regard to "[Coding] does not dictate practice", it has been the WHO's decision to replace most of the ICD-10 F45.x Somatoform disorders and F48.0 Neurasthenia with the far more loosely defined, 6C20 Bodily distress disorder for ICD-11. Which might be viewed as the WHO dictating practice despite robust opposition to the BDD diagnostic construct.


Dr O'Leary has said:

If I have understood Dr O'Leary correctly, what she is proposing is this:

that the conjoined terms "ME/CFS" and "Myalgic encephalomyelitis/Chronic fatigue syndrome" should be used in practice for "the biomedical disease";

that the term "CFS" and "Chronic fatigue syndrome" should be used solely to describe "a psychiatric condition that sometimes develops in reaction to acute viral infection. It is essentially deconditioning that arises from inactivity when patients embrace faulty illness beliefs."​

Under this proposed framework, it is currently unclear to me what code Dr O'Leary envisages should be used in NHS England data sets to record and collect data for the "Chronic fatigue syndrome" that is not "Myalgic encephalomyelitis/Chronic fatigue syndrome" - both at the point of care, and for recording the episode of patient contact, after the event, for reporting data for statistical and epidemiological analysis.

The "Chronic fatigue syndrome that is not Myalgic encephalomyelitis/Chronic fatigue syndrome" would need a target code to differentiate it from ICD-10 G93.3 and it would need to be clearly defined, if it is to have clinical utility.

So I would be interested to know how Dr O'Leary proposes "Chronic fatigue syndrome" would be coded for in NHS Data Sets?

I assume that Dr O'Leary proposes this distinction for use in NHS England but also for all member states, including those member states that are licensed by the WHO to develop and maintain their own modifications of ICD, for example, the US.


Before I am able to form any position on Dr O'Leary's proposal, I consider that wide discussion and consultation amongst UK and international patient organisations, advocates, patients, caregivers, clinical and research allies would need to take place to determine the impact on patients and to evaluate the potential for unintended consequences:


given the historical and current usage of all three terms in the UK and globally;
given that some countries are responsible for their own versions of ICD;
given that some member states have adopted the clinical modifications of other countries;
given that ICD-10 cannot be updated;
given that ICD cannot, in any case, classify a conjoined term like "Myalgic encephalomyelitis/Chronic fatigue syndrome";
given that the ICD-10 "target code" for all three terms will remain G93.3 Postviral fatigue syndrome for the remaining life of the ICD-10 International edition;
given there are exclusions under ICD-10's F48.0 Fatigue syndrome for the G93.3 code;
given that the WHO's decision to retain all three terms under the Diseases of the nervous system chapter was supported by the ICD-11 MSAC and CSAC committees;
given that the ICD-11 code sets are now frozen and the entity "Chronic fatigue syndrome" cannot be relocated to another ICD-11 chapter or under a different Parent class, since this would entail a change of code;
given that all three terms and their associated index terms all direct coders to the 8E49 target code in the ICD-11 electronic search engine (the ICD-11 Index);
given that for ICD-11, there are exclusions specified for all three 8E49 terms under the Mental, behavioural and neurodevelopmental chapter's BDD and under the Symptoms, signs chapter's MG22 Fatigue;
given that many patients in the UK, the US and beyond have "Chronic fatigue syndrome" recorded as their diagnosis in their medical records;
given that in the US, an ICD-10 code is essential for reimbursement purposes, patient records and data reporting (and in the US there is a choice of assigning one of two codes, either G93.3 or R53.82 Chronic fatigue syndrome NOS and many US patients will have been assigned the R53.82 Chronic fatigue syndrome NOS code in their medical records);
given that the US's NCHS/CDC has discussed proposals for the potential relocation of Chronic fatigue syndrome back under G93.3 for ICD-10-CM, and for the addition of the SEID term;

given that in some countries, application of a psychiatric disorder code will have implications for "care pathways" and will determine what tests, investigations and treatments a clinician can order and what insurers will be prepared to reimburse;

given that application of a psychiatric disorder has implications for employees' medical insurance and may determine the duration of medical insurance cover and the types of treatments employees might be expected to undertake, for example CBT/GET or similar therapies - it should not be underestimated what a complex and nuanced conversation this is.

I am not persuaded that Dr O'Leary has given due consideration to all these issues.


So no - I cannot say that I don't actually disagree with this proposal.

Nor can I agree that "it might be good for the ME community to support it" because I can envisage significant implications for patients, the potential for unintended consequences and considerable scope for diagnostic and nomenclature confusion amongst patients, health care providers, payers, researchers, coders, social services, education and workplace accommodations, medical insurers, welfare benefits agencies, tribunals and legal cases, in addition to the issue of not being able to code for conjoined terms (both in ICD and SNOMED CT) and because a suggestion like this needs substantive discussion, consultation and analysis amongst UK and international stakeholders to determine the implications for patients and evaluate potential unintended consequences - and this is a dialogue that hasn't taken place.

 

To be honest @Diane O'Leary, I cannot see the point in this sort of discussion. It irritates clinicians and researchers of all types. They just want to get on with looking after people or doing research and they know which people they are dealing with.

The history is I think unhelpful. Wessely said at one point that people with ME and people with CFS are almost completely separate groups. By that I take him to have meant that people with 'ME' have false beliefs and people with CFS are actually fatigued. So for him CFS was the real biology, I guess. Most forward-thinking researchers are adopting ME/CFS simply to keep people happy, knowing that the name is ultimately of no consequence. But if people call it CFS or ME I see no point in wasting time arguing about it. ME is a silly term based on a theory that is longer held. So maybe was CFS (although it is the most theory free term) but so is lupus erythematous and rheumatoid arthritis. These terms are not immutable constructs, just labels.

 

I have provided Sonya Chowdhury, in her capacity as a Forward-ME member organisation rep, with a copy of the texts of Posts #62 and #67. Copies of Posts #62 and #67 are also being provided to Richard Simpson, Invest in ME, and to Helen Brownlie, The 25% ME Group.


For my August Report:

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

download PDF here:

https://dxrevisionwatch.files.wordp...ion-of-pvfs-me-cfs-for-icd-11-august-2020.pdf

 

https://twitter.com/user/status/1301926259950268416


https://twitter.com/user/status/1301929807639388160

 

I'm still unclear what bearing this has on the movement initiated by the IOM, NIH and AHRQ reports. Nothing about the coding system changes the fact that when these organizations rejected the Sharpe/Wessely construct they called it CFS, and that afterwards all US health orgs, including the CDC, have rejected that term. Nothing about coding changes the fact that this same change then occurred in Sweden and Denmark. Most importantly, nothing about coding changes the fact that in the lead-up to release of the new NICE guideline, NICE stopped calling the condition CFS and started calling it ME/CFS. It's very surprising to me that the UK ME community has not been more celebratory about that.

Coding challenges never dictate the best course of clinical practice. I mean, when researchers and policy makers develop new understanding that's a challenge for coding, it's coding that has to change, not practice. And it doesn't really matter how it changes. What matters is what clinicians now do, and what they should do. Coding will catch up.

I think it would be helpful for the UK ME community to look up a bit - I mean, to take a bigger, broader look at changes beyond the UK. There is a global trend that's unequivocally positive. In essence, it's the realization of the goal the community has worked toward for decades. A very substantial portion of national health organizations and researchers now accept that ME is a disease that requires biomedical research, and that view is sweeping across the globe with real power.

Within that movement the term CFS is used for the old Wessely/Sharpe way, and the term ME/CFS is used for the new disease model. That is the point I have made at the BMJ - nothing more. In the context of that marvelous movement this is what the terms mean.

My view: when you have a win it's important to make the most of it. This is a win. It's a powerful movement and it will prevail. When we quibble about coding and terminology we do nothing to support that movement.

 

For clarification: the NICE CG53 Guideline, published in 2007, was already using "CFS/ME" - not "Chronic fatigue syndrome."

https://www.nice.org.uk/guidance/cg53

Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management
Clinical guideline [CG53] Published date: 22 August 2007


When Danish health authorities cease to be in thrall to Per Fink and rewrite their management guidelines, then I will celebrate.

I do not consider that pointing out (several times now) that classification and coding systems like ICD and SNOMED CT cannot classify conjoined terms because it does not conform to their conventions or meet their requirements for backward and forward statistical analysis, is "quibbling" - it is fact.

It means that whatever conjoined term might be being used in practice - it cannot be coded for as a conjoined term - it has to be coded as one of the existing terms.

These technicalities are a separate issue to the issue of whether the use of the term, "Myalgic encephalomyelitis/Chronic fatigue syndrome" alongside the term, "Chronic fatigue syndrome" (to be used for the "old Wessely/Sharpe way", according to your proposal) has clinical utility, patient acceptability, unintended consequences etc.

It is not a question of waiting for "coding to catch up".

The WHO is not going to change the conventions that govern the structure of its classification because you want to see the term "Myalgic encephalomyelitis/Chronic fatigue syndrome" incorporated into the classification and the term "Chronic fatigue syndrome" retired or located elsewhere (though it's not at all clear just what you would want the WHO to do with 8E49 Chronic fatigue syndrome, because you still haven't clarified).

I note also that you haven't answered my question: If "Chronic fatigue syndrome" were to be used for the condition that is not "Myalgic encephalomyelitis/Chronic fatigue syndrome" how do you envisage it would be coded for in NHS England data sets?

Every encounter with the patient in primary or secondary care is accounted for at the point of contact, and after the encounter, for statistical analysis - and ICD-10 and in some cases, SNOMED CT codes are required. You cannot escape coding.


You reside and work in the US, where ICD codes are required not just for patient records and data reporting, but also for reimbursement.

The US uses a clinical modification - ICD-10-CM. The NCHC/CDC that is responsible for the development, maintenance and update of ICD-10-CM hold a twice yearly meeting of the ICD-10-CM Coordination and Maintenance Committee at which proposals for changes are formally submitted for discussion and consideration by the NCHS Director. Following a meeting, there is a period for public review and comment.

I suggest you familiarise yourself with Topic Packet Part 2 for the September 11-12, 2018 meeting.

The PDF is here: https://www.cdc.gov/nchs/data/icd/Topic_packet_Sept_2018_part2.pdf

The Agenda item for discussion of the classification of R53.82 Chronic fatigue syndrome NOS and the G93.3 terms in ICD-10-CM starts on page 11.

Note how the terms are set out in the proposal; note that "Myalgic encephalomyelitis/Chronic fatigue syndrome" cannot be used in the ICD-10-CM either. Note that the term "Chronic fatigue syndrome" was not being proposed to be retired but moved back under G93.3. If you were to approach her, CDC's Donna Picket would tell you that retiring the term CFS would create problems for aggregation of legacy data and result in data loss. There was an additional proposal presented at this meeting which hasn't been included in the Topic Packet but is attached to this post. That option also retained the term "Chronic fatigue syndrome" and proposed no conjoined terms - because these cannot be used in ICD-10-CM, as each entity is required to be unique. As you see in these proposals for discussion, each term (including a proposal to code for SEID, in one of the Options) is assigned a sequential 5 character sub code, under a renamed 4 character Parent class.

You do not seem to have taken on board that a significant percentage of patients, globally, already have a diagnosis of "Chronic fatigue syndrome" in their medical records, medical insurance records, employment records, school records, welfare and benefit agencies records, social service care package assessments and records etc.

What will happen to them under your proposed framework of handing over the term "Chronic fatigue syndrome" to liaison psychiatry?

You have not addressed this very crucial question.


I reiterate:

When you have consulted widely with international organisations, advocates, clinician and research allies, and patient and caregiver stakeholders about your proposal then perhaps this is a discussion that might be resumed in a meaningful way. Without consultation, you have no mandate to be scolding the "UK ME community" for what you perceive as a lack of enthusiasm.

I don't think I can add anything more than the posts I have already posted in this thread.


Attached:

Topic Packet 2 September 11-12, 2018 C & M meeting;
Agenda Option 1
Agenda Option 2

 

Well taking that broad view is all very nice, but those changes are completely invisible & frankly non existent to the patient experience in everyday life, dealing with health professionals & benefits agencies.

I'm afraid i havent been able to read all the details of the relevant posts but i do just want to say that if 'CFS' is handed over to psychiatry at this point (ie before we have firm biomedical test result to prove it's organic nature), it will be catastrophic for patients who are actually dx with it, unless they are under the care of the very tiny number of enlightened GPs who believe in ME as a biomedical disease. I dont know anyone who is under the care of one of these fabled Doctors, i wish i were but i'm not, and trying to get one's dx changed on notes when you have had it for 20 yrs across several hospitals, is pretty much impossible frankly. So having CFS be encouraged to be seen as a psych problem at this stage before we have a biomedical test that i can go into my GP and say with a test result "see it's not CFS its ME/insert new name here, please remove that dx from my records", will simply make the situation/experience of patients even worse, because none of us - especially those who also have a standard psych dx like depression/PTSD will be able to get the CFS removed/changed. The idea fills me with fear of what will happen to me if that takes place. So i must agree with Suzy when she says

 

Exactly this.

And in reference to celebrating NICE's adoption of the term ME/CFS, replacing CFS/ME with it for their communications relating to their guidelines, what would that name change matter if the new guidelines simply repeated the recommendations of the existing guidelines? I'll admit that I was pleasantly pleased and hopeful when I saw the name change, but I'll wait until we see the new guidelines before I think about actually celebrating, given that I definitely don't want to celebrate a different name for the same abuse.