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

The main problem we have found is that CFS is conflated with CF. It therefore becomes " fatigue".
It has suited BPS brigade to promote the conflation - in paediatrics PEM has until very recently been defined only as "fatigue" ( and for some studies this still pertains) .
In many, many papers CF and not CFS is what is actually being studied. We therefore have a body of literature that is ill fitted to patient experience because it so rarely actually studies what it should.
This is what needs to be called out - the inappropriate use of a defined term.

CFS, is as @Dx Revision Watch has highlighted, coded under G93.3, and this is a hard fought for and won categorisation. I know noone diagnosed with ME or even ME/CFS because CFS is the diagnostic term most used. That it is a dustbin diagnosis is what needs addressed.

It's association with CF is a bit like other conflations which soon assume synonymnity for those whose brains (like mine) do not follow or appreciate the nuances and importance of coding. BDS and BDD spring to mind).

Yes, it is a crap term ( personally I think it is awful and does lend itself easily to BPS storylines) - but simply renaming it and imbuing it with our own associations does not mean that it will be treated in a different manner.

 

If Dr O'Leary considers the issue that millions of patients worldwide have already been assigned a diagnosis of Chronic fatigue syndrome in the records of the multiple agencies with which they have to deal is "a small point"; and argues that ICD and SNOMED CT classification and coding is a minor inconvenience that would "catch up" in time, I can only conclude that she has limited understanding of how coding underpins the operation of NHS England and at local NHS Trust level to support strategic planning, commissioning, resource allocation, determining care paths, NHS Quality and Outcomes Frameworks etc.


Once again: at the point of care, SNOMED CT terminology system is now mandatory for use in primary and secondary care data sets and SNOMED CT Concept codes are mapped to ICD-10 equivalents.





After the encounter, ICD-10 Version: 2016 is mandatory for data compilation.

You cannot have a national health system in which clinicians are being encouraged to apply a long established term (since 1994 in the case of the ICD-10 Index) to a different cohort, when clinicians and coders will be continuing to code that term to G93.3 and where the term "ME/CFS" contains the same term that you are proposing should now be applied to a different cohort and will also continue to be coded to G93.3 (and all three terms to 8E49, once ICD-11 is rolled out in the NHS).

I am struggling to see the logic in your proposal.



Every year, NHS Digital publishes the: NHS Digital National Clinical Coding Standards guidance for coders.

"These national clinical coding standards are for use with the Tenth Revision 5th Edition (ICD-10) when translating diagnoses and other health related problems recorded in a patient’s medical record for morbidity coding.

The classification of diagnoses using ICD-10 is a mandatory national requirement for the NHS Admitted Patient Care (APC) Commissioning Data Set (which includes day cases) and other data sets as outlined in the section below."​

The current edition is:

NHS Digital National Clinical Coding Standards ICD-10 5th Edition (April 2020)

PDF: https://tinyurl.com/y4ogxxu6

On Page 84:

This note for coders has been included in the NHS Digital Clinical Coding Standards for a number of years.

"Clinical coding

Clinical coding is the translation of medical terminology that describes a patient’s complaint, problem, diagnosis, treatment or other reason for seeking medical attention into codes that can then be easily tabulated, aggregated and sorted for statistical analysis in an efficient and meaningful manner.

(...)

Background

The WHO states that ICD is to permit the systematic recording, analysis, interpretation and comparison of mortality and morbidity data collected in different countries or areas and at different times. The ICD is used to translate diagnoses and other health problems from words into alphanumeric codes, which permits easy storage, retrieval and analysis of data’1.

1 World Health Organisation International Classification of Diseases and Related Health Problems’ ICD-10 Volume 2, 2.1 Purpose and applicability


ICD-10 is a vital component of national data sets, such as Hospital Episodes Statistics (HES) in England, Hospital In-patient Statistics (HIS) in Northern Ireland, Patient Episode Data for Wales (PEDW), Scottish Morbidity Records (SMR), Cancer Registries, National Service Frameworks, Care Pathways, Performance Indicators, Commissioning Data Sets (CDS) and other Central Returns.

The statistical classification underpins key information initiatives that support the monitoring of morbidity and health trends. NHS managers and health care professionals use it locally to support operational/strategic planning and performance management.

For example:

• Statistical uses include study of aetiology (cause or origin) and incidence of diseases, health care planning and casemix.

• Epidemiologists use statistical data to study frequency and occurrence of disease. The aggregation of coded data enables health professionals to identify at risk populations based on demographic, diagnostic or environmental factors.

• Planners and managers use statistical data to review caseloads to: determine specialty needs, inform staffing levels, patient admissions and clinic schedules in hospitals.

• Clinical audit uses coded data to compare patient care and measure outcomes within specialities. Doctors may use extracts of local information for research purposes. The United Kingdom has a mandatory obligation to collect and submit ICD-10 data to the World Health Organisation (WHO) for the production of international statistical and epidemiological data..."​

PDF (250 pages): https://tinyurl.com/y4ogxxu6

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


Coding and data analysis is crucial to the operation of the NHS.

SNOMED CT and ICD-10 are embedded into health service electronic record systems. Type a term into the system, like "Chronic fatigue syndrome", and the G93.3 code will be automatically assigned.

And as another poster has said, there are other terms that liaison psychiatry has at its disposal:


ICD-10 Version: 2016

F45.x Somatoform disorder block
F48.0 Fatigue syndrome
R53 Malaise and fatigue


SNOMED CT

SCTID: 887761000000101 Medically unexplained symptoms (finding)

and potentially, Somatic symptom disorder (if approval of IAPT's request is obtained)



and when ICD-11 MMS has implemented,

MG22 Fatigue (I obtained Exclusions for all three 8E49 terms under MG22.)

6C20 Bodily distress disorder (I obtained Exclusions for all three 8E49 terms under 6C20.)



You cannot kick the issue of ICD-10/SNOMED CT coding, classification and terminology into the long grass just because it doesn't support your proposed paradigm shift.

Nor dodge the question of how you envisage safeguarding the thousands of patients who already have a diagnosis of Chronic fatigue syndrome in their medical records.

To dismiss my concerns around coding as "quibbling" is disturbing and it concerns me enormously how much time and energy members of this forum have had to expend reiterating these points to you.

Yesterday, the WHO Assistant Director-General was flagging up the BMJ Management of Covid-19 Practice Points article on Twitter. I hope not too many clinicians and allied health professionals are going to be reading the Rapid Responses.


Dr O'Leary, you are a US based academic. If you want to set yourself up as an effective advocate for ME and CFS patients, it is essential that you first consult with patients and with patient organisations before putting out statements like:

or:

and not respond, dismissively, with:

when you are challenged on your illogical proposals.

 

But you don't consult with that patient population. Therefore you cannot claim a mandate to represent their best interests.

 

I'm not particularly interested in what it's called in philosophy. Philosophy doesn't pay the bills when your benefits have been cut off.

No, once the science is there, the coding will be changed.

In the meantime, encouraging clinicians to use CFS for a psych condition when they will have to code that term under G93.3 is illogical and harmful. That you evidently can't see this is extraordinary.

 

I suggest Dr O'Leary runs that statement and her BMJ Rapid Response proposal past all the patient org reps of Forward-ME and also puts out her proposal for review by international patient organisations, and then returns here with their analysis of her proposal.

 

Can you please expand a bit on what you are basing this statement on? In what way do you feel that Sweden is taking ME seriously? Denmark?

(I'm asking because I live in Sweden and I would definitely not agree that ME is taken seriously here, so I would be very interested in getting to know a bit more about where this perception is coming from )

 

Yes, I would like this statement substantiated, too.

Resolutions agreed at parliamentary discussions don't always translate to changes in service provision or in increased research funding. I am not aware, for example, that Danish health authorities have made any practical changes in their guidelines for management of ME, CFS or to the clinics that provide treatment and the disease models they adhere to.

Perhaps, Dr O'Leary should obtain an update on the status of change in Denmark from one of the leading Danish patient organisations rather than reiterating that a "momentous movement" is in progress.

Perhaps she should also talk to patients in Devon, some of whom are having prior diagnoses of G93.3 ME changed to a mental disorder diagnosis and who are being referred for IAPT services.

And if Somatic symptom disorder does get approved for addition to SNOMED CT, there is the potential for the SSD diagnosis to start creeping into use by NHS England beyond its requested usage for the new IAPT Data Sets v 2.0, and used in other countries which have implemented SNOMED CT.

 

My understanding is that one of the reasons CDC has begun to use the hybrid term "ME/CFS" was because it intends to adopt the IOM independent committee's proposed "Systemic Exertion Intolerance Disease (SEID)" clinical diagnostic criteria but did not want to endorse the committee's proposed "Systemic Exertion Intolerance Disease (SEID)" term.

There have been published concerns about the proposed "Systemic Exertion Intolerance Disease (SEID)" term and criteria (see Jason et al).

 

In the absence of consultation with stakeholders, please do not presume to tell patients, carers and advocates, "The name they use for the damaging Wessely/Sharpe thing is CFS (because that's the term Wessely and Sharpe use)...This is exactly what you have hoped for."


WHO statement, November 2018, supported by the ICD-11 Medical Scientific Advisory Committee (MSAC)* and the Classifications and Statistics Advisory Committee (CSAC)**:

*Dr Christopher Chute (Professor, Johns Hopkins Bloomberg School of Public Health) is Co-chair of the MSAC.

**Donna Pickett (CDC, NCHS, Chief, Classifications and Public Health Data Standards) is the North American WHO-FIC Collaborating Center representative on the ICD-11 CSAC committee.

Dr O'Leary, please provide documentary evidence that in NHS England, clinicians and health agencies are saying:

a) "take all the patients dx with CFS and change their dx to to ME/CFS"...?

b) please explain what practical difference this would have on the care NHS England patients receive when a diagnosis of "CFS" or "CFS/ME" or "ME/CFS" or "Myalgic encephalomyelitis/Chronic fatigue syndrome" or "Benign myalgic encephalomyelitis" or "Myalgic encephalomyelitis" or "Myalgic encephalopathy" or "Myalgic encephalitis" (specific to SNOMED CT UK Edition) or "Postviral fatigue syndrome" will all result in assigning the same code, G93.3 and the same care pathway?

Hyperbole won't cut the mustard, I'm afraid, on this forum.

 

I hope in the near future that they find biomarkers for the pathophysiology of PEM and rename it. Perhaps change the definition of ME to include the new biomarkers for PEM, and then get rid of CFS for good.

 

I've just posted this in another thread, but I think it might also be of interest here:


Request for the addition of a Post COVID-19 syndrome Concept for SNOMED CT:

I've been checking the NHS Digital submissions portal fairly frequently for any submissions requesting SNOMED CT Concept codes for Post Covid-19 related symptoms or a Post Covid-19 syndrome.

There is now a request:


https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=32731

Request Submission Portal > SNOMED CT Submission Portal

Submission date: 19/08/20

Request 32731

Type
Add concept

Status
In Progress

Hierarchy
Clinical finding

Parent identifier
1240751000000100

Suggested name, term or description
Post COVID-19 syndrome (please double check with clinical bodies)

Priority
Very Urgent

Brief summary of the request

We would like to request concept(s) related to post COVID-19 syndrome or whatever the clinical community decide to call.

Description of the addition or change

My trust is the London COVID-19 centre and my respiratory consultants have expressed their view that currently there is a lack of post COVID-19 related concepts. These patients who either had COVID-19 (through confirmed PCR test) or a high suspicion of COVID-19. Nearly six months down the line, they started developing what they call “post COVID-19 syndrome”. Right now, we have been recording this using a list of the symptom concepts. You might want to work with the clinical bodies to author such concept request.

We need it urgently as these patients is not just a few. It is significant numbers going forward.


Request update

Source of authority

Provisional concept term

SNOMED International request reference number

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


Note that SNOMED CT Parent identifier 1240751000000100 cited in the request is:

1240751000000100 | Coronavirus disease 19 caused by severe acute respiratory syndrome coronavirus 2 (disorder) |

 

The Countess of Mar obtained the removal of the Mental disorder Parent from SNOMED CT Concept: 52702003 | Chronic fatigue syndrome (disorder) in July 2015:


The SNOMED CT terminology system does not use a system of chapters, as used by the WHO's ICD, to classify its Concept terms.

Instead, disorder Concept terms are assigned a hierarchy of Parent and Child Concepts. There may be several Parents and several Child Concepts associated with any given Concept and each Concept may have a number of alternative or related terms listed under Synonyms to that Concept which are take the the same code.

In 2015, the Countess of Mar opened a dialogue [1] with NHS Digital concerning SNOMED CT Concept: 52702003 | Chronic fatigue syndrome (disorder).

At that point, both the Read Code Primary Care terminology system (since retired) and SNOMED CT classified Chronic fatigue syndrome under two Parent codes.

In SNOMED CT, these were:

74732009 | Mental disorder (disorder) and
281867008 | Multisystem disorder (disorder).


The Countess of Mar argued for the removal of the 74732009 | Mental disorder (disorder) Parent. This request was referred on to SNOMED International's terminology leads, who agreed that the Mental disorder parent would be removed for the next release of the International Edition and this change was implemented.

This left Concept: 52702003 | Chronic fatigue syndrome (disorder) with one parent, 281867008 | Multisystem disorder (disorder).


In 2017, SNOMED CT terminology managers decided that the Multisystem disorder concept term was not sufficiently specific for the purposes of their system and the term was inactivated (retired) for the January 2018 release.

There had been 90 Children terms under SCTID: 281867008 Multisystem disorder (disorder) and the retirement of this parent concept had implications for all of these 90 terms — not just for Chronic fatigue syndrome and its Synonym terms.

Many of these 90 Children terms were assigned under a more specific parent but a few, including Chronic fatigue syndrome, had no new parent assigned to them and were listed only as "(finding)".


This presented an opportunity to request the assigning of a more specific parent for Chronic fatigue syndrome and the terms listed under Synonyms.

In February 2018, a formal request and rationale for adding the Parent or "supertype", Disorder of nervous system was submitted. I advised the Countess of Mar on the submission process and I prepared a formal submission for her to be submitted in the name of Forward-ME.

This was accepted and implemented for the July 2018 release of the SNOMED CT International Edition.


According to the Release Notes for the International Edition's July 2019 release, SNOMED terminology managers had recently completed a review of the hierarchy associated with 84229001 | Fatigue (finding) and its subtypes.

The terminology team had decided to add 52702003 | Chronic fatigue syndrome (disorder) as a Child under the Fatigue (finding) Parent.

So 52702003 | Chronic fatigue syndrome (disorder) currently has two Parents again:

118940003 Disease of nervous system (disorder) and
84229001 Fatigue (finding)

and therefore lists under Children under both 118940003 Disease of nervous system (disorder) and 84229001 Fatigue (finding).


This is an issue that still needs to be sorted, but one which I shall not be addressing myself since, as you know, I have been trying to retire for a couple of years, now.

The descriptive text under the Fatigue (finding) Parent reads:

https://browser.ihtsdotools.org/?pe...edition=MAIN/2020-07-31&release=&languages=en

Fatigue (finding)

SCTID: 84229001

84229001 | Fatigue (finding) |
en Weariness
en Fatigue (finding)
en Fatigue
en Fatigue refers to a lack of energy, and it may be either acute or chronic. Fatigue may result from exertion, stress, and a wide variety of underlying medical conditions, including infections, malignancies, autoimmune disorders, anxiety, and depression. It may also be an adverse effect of medical treatments such as chemotherapy. Depending on the underlying cause, fatigue may or may not be relieved by rest.

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

The Child Concepts listed under the Fatigue (finding) Parent are:

Children (9)

• Asthenia (finding)
• Chronic fatigue syndrome (disorder)
• ≡ Fatigue associated with acquired immunodeficiency syndrome (disorder)
• ≡ Fatigue associated with malignant neoplastic disease (finding)
• ≡ Fatigue due to chemotherapy (finding)
• ≡ Fatigue due to radiation therapy (finding)
• Fatigue due to treatment (finding)
• Psychogenic fatigue (finding)
• Tired (finding)

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


1 Forward-ME correspondence with NHS Digital (2014 to 2015): http://www.forward-me.org.uk/Reports/SNOMED.pdf

 

That doesn't represent my experience with the medical profession what so ever (They at best refuse to see symptoms as consequential and at worst refuse to believe symptoms are real), and I'm sure I'm not the only one.

What planet are you living on?

 

When the SNOMED CT terminology team approved the removal of the Mental disorder Parent from Chronic fatigue syndrome and its Synonyms terms, in 2015, they also reviewed the Parental hierarchy for Postviral fatigue syndrome.

Postviral fatigue syndrome had been listed as a Child under Chronic fatigue syndrome and took the same Concept code.

But for the July 2015 release, Postviral fatigue syndrome was assigned its own Concept code and relocated under a new Parent:

Post-viral disorder, under Parent:

Post-infectious disorder

(a change of Parent that had not been requested by the Countess of Mar).

https://browser.ihtsdotools.org/?pe...edition=MAIN/2020-07-31&release=&languages=en


Postviral fatigue syndrome nevertheless continues to be cross mapped to the ICD-10 G93.3 code, for consistency with the coding of PVFS; (B)ME; and CFS in ICD-10.

 

I think you are talking about the members of the medical profession you are likely to meet if you consult with someone most places.

I am talking about physicians and researchers with a specific interest in ME/CFS as a clinical scientific problem. And I am not talking about people who are interested in MUS or BDD or chronic fatigue in general.

 

I'm hoping you all can see that it would take days to respond to these many comments. I will make two central points, then I have to focus on proofs for publications. Those have much greater power to change practice for patients' benefit, so I put my attention there.

1. It might be helpful to know that Lady Mar at Forward-ME did read my BMJ letter before submission and - like clinicians - found nothing in it that implies the Sharpe/Wessely construct is credible, and nothing that implies people with CFS dx are not suffering from serious biomedical disease.

I have explained this repeatedly and I see no gain in saying it again and again. If you think the letter says either of these things, you have misread it.

To be as clear as I can be: if you want clinicians to carefully distinguish a psych dx from a biomedical dx you must allow them to have two distinct names for these approaches. Right now, those who work on your behalf to support the disease model use CFS as the term for the psych alternative. That approach works in your favor.

Using the terms this way does not imply that the psych approach is credible. It does not imply that patients dx with CFS are not suffering from a disease. There is nothing about this use of terms that is detrimental to your cause in any way. In fact, this use of terms honors the usage in the ME community.
​

2. I have tried repeatedly to explain why I would spend so much valuable time fielding this resistance on s4me.

Because of long Covid, ME is important to the public right now, and it's important to the profession. Both are trying to decide whether ME patients are frustrated by untreated disease or just angry people with a psychological need to argue with med professionals. It's very important right now to do all that you can to show that the angry people idea is wrong.

Clinicians read my letter as saying there are two competing explanations - one psych and one med - and the psych one has now been rejected by a great many highly authoritative sources. That is the sum total of its message. For this reason, it's hard for them to understand why the ME community would argue against it. It's hard to see what patients could gain by insisting they want to keep the term CFS in use. All of this arguing makes it so easy for professionals to take the angry people interpretation of the ME community.

I submitted that letter by request from one of the authors of the Greenhalgh paper, because they wanted to have a public discussion about psych dx vs disease dx for ME and long Covid patients. I'm hoping all can see that it would have been valuable for patients to support that discussion.

I will have to return to work now - thank you again for all that I've learned from these comments.​

 

So you are not prepared to be accountable for statements you make?

More hyperbole.

I find that very worrying.

Did you run it past Sonya Chowdhury and other org reps on Forward-ME - no, I guess not.

Please desist from telling us what we should think.

That is a risible argument. You evidently haven't taken on board any of the many concerns raised with you.

Again, please desist from telling us what to think and what to do; you have no mandate to do so or to frame our legitimate concerns as "angry people".

All this "arguing" is because many of us don't want to keep the term CFS in use. But while it is in use, handing the term over to the psychs is a very bad suggestion; secondly, it does not work in the context of classification and terminology systems and it serves to demonstrate how limited your understanding of the NHS health system is and how terminology is used within the NHS.

Again, please desist from telling us what to think and what to do; you have no mandate to do so.

Evidently you have learned nothing.

And perhaps you should try running your ill-informed, dangerous and fallacious arguments past some US advocates and patients and see what response you get from them.