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

[Dx Revision Watch]

Welcome to the forum, @cfsandmore

...As others have explained CFS is a name often used by Primary Care Physicians and General Practitioners, my doctor still uses CFS.

And they are likely to continue to do so until science sorts out aetiology and subsets.

The International Edition of SNOMED CT terminology system and the various national extensions all have Chronic fatigue syndrome listed as the "Preferred" Concept term, with a number of alternative terms under Synonyms (including Myalgic encephalomelitis) listed as "Acceptable" (all terms have been cross mapped to ICD-10's G93.3).

Germany's ICD-10-GM has "Chronisches Müdigkeitssyndrom [Chronic fatigue syndrome]" as the G93.3 Concept Title term – not Postviral fatigue syndrome. The US's ICD-10-CM has a choice of selecting one of two codes: R53.82 or G93.3, depending on whether, in the clinician's judgement, there is enough evidence to attribute the patient's illness to a viral onset [1].


1 Source: ICD-related questions from CFSAC's May 2011 meeting, background document presented by Dr Wanda Jones to the CFSAC Committee:

"As it relates to CFS the use of two codes is consistent with the classification as there would be a code to capture CFS when the physician has determined the cause as being due to a past viral infection (G93.3) or if the physician has not established a link with a past viral infection (R53.82).

If code R53.82 were eliminated it would not be possible to disaggregate cases that are now distinguishable through the use of two codes.

There is a general equivalence map between ICD-9-CM and ICD-10-CM codes, however, if a concept is not carried over from the earlier version to the newer version data will be lost going forward."​

Dr Jones further clarified for the Committee that:

"...if however [the clinician] could not identify where the trajectory developed toward CFS, then it would wind up in the R codes."​

It was further confirmed, shortly after that meeting, that testing for a viral illness is not required to assign a code – that coding is based on the clinician's judgement.


Source: NCHS/CDC September 14, 2011 Coordination and Maintenance Committee Meeting, Diagnosis Agenda Proposals document:

"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. It should be noted that including chronic fatigue syndrome NOS at code G93.3 would make it difficult to disaggregate cases that are now distinguishable through the use of two separate codes."​

Many patients in the US will have been diagnosed using the R53.82 Chronic fatigue syndrome NOS code.

It is not known what percentage of newly diagnosed patients in the US have been assigned the G93.3 code rather than the R53.82 code since October 2015, when ICD-10-CM was finally implemented for morbidity use for records and reimbursement.

Before publicly promoting any proposals for how terms might potentially be used going forward (whether in the context of ME, CFS patients or patients with chronic post COVID-19 symptoms), a thorough understanding of how diagnostic terms are currently recorded in patient electronic medical records (EMRs) using SNOMED CT and reported for reimbursement and statistical analysis using ICD-10 or national modifications of ICD-10 is essential.


For example, the US's R53.82 Chronic fatigue syndrome NOS code is intended for use when the physician has not established a link with a past viral infection.

But Dr O'Leary writes:

"When researchers and clinicians tie long Covid to CFS, they can reassure the public that nonspecific long Covid will be resolved through virus recovery strategies."

[Edited for clarity]

 

[Trish]

Dr. O'Leary getting to the psychiatrist's, psychologist's, or therapist's office requires physical exertion. After arrival, there is the visit it's self. CBT is emotionally and mentally exhausting. I found no matter how much I said “may I be well” I only worsened. My mind can not think away CFS. I was causing myself lots of Post-Exertional Malaise which was a worsening of my CFS. I was declining. My therapist realized I was exhausted and nearing hospitalization. The solution was to stop and rest. I never returned to my previous baseline.

It is humbling to reveal my embarrassment of trying CBT as a treatment for CFS before such an esteemed forum. You see Dr. O'Leary, I wanted to be healthy so badly. I wanted my life back. I wanted my freedom back. The disease is a prison. Even with well-meaning intentions, I made a mistake. It was a mistake to try CBT. Saying “may I be well” doesn't cure disease. There is no mind-body connection when it comes to diseases. If there was we wouldn't see disease in humans. A diabetic's mind can not overcome diabetes. A diabetic can not say, “may I be well” and their pancreas magically begins working. I learned this lesson the hard way, by trial and error.

General Practitioners and Primary Care Physicians who are wise in the treatment of CFS reach for the prescription pad and write antidepressants for depression. Why? They are trying to save the patient from psychotherapy post-exertional malaise. By recommending psychiatrists for CFS you have opened a door for General Practitioners and Primary Care Physicians who are unwise in CFS to send long COVID patients into a post-exertional malaise nightmare. These patients will be harmed. Some will become severe CFS patients. As others have explained CFS is a name often used by Primary Care Physicians and General Practitioners, my doctor still uses CFS.

If it is within your power you should retract your statements about CFS. Or at least denounce your previous statements about CFS. It would take great humility to do so, but you would be saving long COVID patients from harm. You asked MECFS patients to try and protect long COVID patients shouldn't you do the same? Shouldn't you practice what you preach? Running away and going back to work isn't a solution. Long COVID patients need your help. Please don't let them down.

(I apologize to the forum for all my spelling, grammar, and punctuation mistakes.)

Hi @cfsandmore, welcome to the forum.

Thank you for sharing your painful experiences with CBT and the ridiculous slogan 'may I be well'. As if that could heal anything. I am sorry you were so badly treated and suffered as a result.

Please don't be embarrassed at being taken in by such nonsensical and harmful treatment. Many of us here have suffered similarly, and learned by painful experience. I spent hundreds of pounds on a similar therapy before I realised it was harmful nonsense. And no need to apologise for any spelling etc. Lots of us including me make mistakes all the time.

I hope Dr O'Leary reads and takes notice of your heartfelt plea to undo the harm her letters may do. She could help us and future patients, whether post Covid or ME/CFS, by publishing a correction making it clear that there is no evidence that any patients diagnosed by any current ME or CFS definition has 'faulty illness beliefs', nor that they should be treated in psychiatry using CBT, GET or any other psychiatric or behavioural treatment.

 

[Willow]

Thank you for sharing your story and experiences, @cfsandmore. I was very touched by your post. Sorry you learned all of this the hard way.

Welcome to the forum. The understanding and support we receive from each other, as well as the discussion of the science surrounding ME/CFS, are very valuable indeed. Take care.

 

[Dx Revision Watch]

A second response from Andrea Martell on the BMJ Rapid Response platform:

09 September 2020
Andrea D Martell
ME/CFS patient, former psychology student
Bachelor of Journalism with Honours, Carleton University
Gloucester, Ontario

https://www.bmj.com/content/370/bmj.m3026/rr-13

Rapid Response:
Re: Management of post-acute covid-19 in primary care- Dr. O'Leary's factual errors

 

[FMMM1]

Physicians and researcher worldwide have agreed to use ME/CFS, I think for the following reasons:

1. Neither term is very good and patients prefer ME.
2. ME is not used on its own to avoid two misinterpretations.
3. We want to avoid people thinking we mean ME in Wessely's sense that 'ME is just thinking you have ME'.
4. We want to avoid an implication that we are talking about an encephalomyelitis, as conceived by Ramsay, that no currently practicing physician has ever seen.

I would add to that that increasingly I see a further interpretation needs avoiding - the 'multi-systemic neuroimmune disorder' invented by the US physician/research community. We do not have evidence for this either and it invites confusion with things like herpes encephalitis and spinal cord compression. If the US community are pushing for just ME alone that would worry me on these grounds.

What we need in medicine is a scientific approach, by which I simply mean sensible and critical analysis of reliable data. What we do not want is to hang on the words of a committee from one isolated country. That is the eminence-based approach that gave us CFS in the first pace.

Interesting thanks. @Michiel Tack

 

[Simbindi]

On my NHS hospital discharge letter last week they wrote that I had 'CFS', although I never used this term myself and was not originally diagnosed with it (in the 90's my GP used the term 'M.E.' as have some, although not all, of my subsequent GPs. So to state the term 'CFS' refers to a psychiatric condition is very, very harmful to all existing 'ME/CFS' patients!

 

[Simbindi]

We generally refer to 'severe M.E.', yet I've never heard a doctor talk about 'severe CFS' or 'moderate CFS', they usually just refer to the illness as simply 'CFS'. I have heard the term 'mild CFS' used by medical practitioners though, I wonder what this tells us...

Edit: So I told the doctors in hospital that I had 'severe M.E.' and they wrote on my notes that I had 'CFS', no level of severity indicated. This happens with my current GP too, in her past hospital referral letters.

 

[Dx Revision Watch]

We generally refer to 'severe M.E.', yet I've never heard a doctor talk about 'severe CFS' or 'moderate CFS', they usually just refer to the illness as simply 'CFS'. I have heard the term 'mild CFS' used by medical practitioners though, I wonder what this tells us...

Edit: So I told the doctors in hospital that I had 'severe M.E.' and they wrote on my notes that I had 'CFS', no level of severity indicated. This happens with my current GP too, in her past hospital referral letters.

Now that the SNOMED CT terminology system* is being implemented for secondary care use, as well as being mandatory for use in NHS England primary care, I don't know whether hospital discharge documentation is using ICD-10 Version: 2016, or SNOMED CT codes mapped to ICD-10.

But for SNOMED CT UK Edition there are three optional qualifiers under "Children" to Chronic fatigue syndrome, which have unique codes:


52702003 | Chronic fatigue syndrome (disorder) |

Children

377181000000104 | Mild chronic fatigue syndrome (disorder) |
377171000000101 | Moderate chronic fatigue syndrome (disorder) |
377161000000108 | Severe chronic fatigue syndrome (disorder) |

These optional Child Concept severity specifier codes are specific to the UK Edition and don't appear in the International Edition or in any of the other national editions and they have been in place for a number of years.

It hasn't been established whether these severity specifiers are ever used within the NHS.


The SNOMED CT "Fully Specified Name (FSN)" and "Preferred" term is 52702003 | Chronic fatigue syndrome (disorder) which is mapped to G93.3 Postviral fatigue syndrome in the SNOMED CT to ICD-10 Classification Map.


This is the National Health Service realm language reference set (clinical part) as it appears in SNOMED CT UK Edition for Chronic fatigue syndrome and the terms listed under Synonyms:

*SNOMED CT is used by clinicians in electronic medical records (EMRs), at the point of care, to record findings, symptoms, diagnoses, interventions, procedures etc. Each clinical concept or phrase is assigned a unique SCTID code to provide a standardised, machine readable terminology for recording and sharing clinical information across multiple health care settings. SNOMED CT's SCTID codes are mapped to ICD-10 and to ICPC-2e codes for interoperability.

SNOMED CT does not regulate which concepts should or should not be used in clinical records, but makes concepts available in response to requests from stakeholders and in accordance with its editorial and content development principles.

Since April 2018, SNOMED CT UK Edition has been the mandatory terminology system for use in NHS primary care, replacing the Read Code (CTV3) terminology system, which is now retired. SNOMED CT UK Edition is scheduled for adoption across all clinical, secondary care and mental health settings from April 2020.

 

[Simbindi]

Even if hospital discharge letters don't specify a severity level (because of the coding system), it makes no sense for my GP not to do so when making a referral for me, as this is vital for the clinician I am being referred to understand in order to be able to treat me effectively and to make health care services assessible to me (I have severe M.E. and a bedbound all day, except to meet my toileting and feeding needs).

 

[Dx Revision Watch]

Even if hospital discharge letters don't specify a severity level, it makes no sense for my GP not to do so when making a referral for me, as this is vital for the clinician I am being referred to understand in order to be able to treat me effectively and to make health care services assessible to me (I have severe M.E. and a bedbound all day, except to meet my toileting and feeding needs).

Absolutely.

It's possible for patients to request additional information to be added to their Summary Care Record.

Could you ask the practice manager to add the information that you are severely affected, bedbound, have special care needs, and that you want this information added to your Summary Care Record and included with all referrals and have him/her confirm that whatever information you have requested to be inserted has been added.

 

[Dx Revision Watch]

On my NHS hospital discharge letter last week they wrote that I had 'CFS', although I never used this term myself and was not originally diagnosed with it (in the 90's my GP used the term 'M.E.' as have some, although not all, of my subsequent GPs. So to state the term 'CFS' refers to a psychiatric condition is very, very harmful to all existing 'ME/CFS' patients!

I hope Dr O'Leary is still reading this thread and understands why there have been so many concerns about her proposal.

 

[Simbindi]

Absolutely.

It's possible for patients to request additional information to be added to their Summary Care Record.

Could you ask the practice manager to add the information that you are severely affected, bedbound, have special care needs, and that you want this information added to your Summary Care Record and included with all referrals and have him/her confirm that whatever information you have requested to be inserted has been added.

Yes. I am going to do that. Currently they aren't even meeting their obligations under the NHS Accessible Information Standard (2016). My GP has accepted emails from me due to my autism long before the 2016 Standard came in, but still won't send me her communications electronically (I cannot use a mobile phone for texts, only a laptop with a full size keyboard). So this is an issue I will take up with the CCG if the practice won't comply after a new formal request, citing the legislation (to be fair, I haven't yet done that in writing). My CCG are now the delegated commissioners of primary care services, so that means patients can complain directly to them about their GP services.

 

[Dx Revision Watch]

Yes. I am going to do that. Currently they aren't even meeting their obligations under the NHS Accessible Information Standard (2016). My GP has accepted emails from me due to my autism long before the 2016 Standard came in, but still won't send me her communications electronically (I cannot use a mobile phone for texts, only a laptop with a full size keyboard). So this is an issue I will take up with the CCG if the practice won't comply after a new formal request, citing the legislation (to be fair, I haven't yet done that in writing). My CCG are now the delegated commissioners of primary care services, so that means patients can complain directly to them about their GP services.

I hope you are able to get this sorted, Simbindi. With many GP practices now doing patient appointments via phone consultations, Skype, email etc because of COVID-19, it's difficult to see why your GP should be reluctant to communicate with you via email.

 

[Simbindi]

I hope you are able to get this sorted, Simbindi. With many GP practices now doing patient appointments via phone consultations, Skype, email etc because of COVID-19, it's difficult to see why your GP should be reluctant to communicate with you via email.

They have in the past used the excuse of lack of security. Of course this is nonsense because there are secure email system providers available (that encrypt the emails for you) that they could subscribe to. Somerset Partnership did this for me when they were doing my ASD assessment and Somerset County Council used a similar system to send me confidential information when I was a lay member assessing bids for the new HealthWatch contract. So it seems that the problem is probably they don't want to pay for the additional cost involved.

 

[Simbindi]

Absolutely.

It's possible for patients to request additional information to be added to their Summary Care Record.

Could you ask the practice manager to add the information that you are severely affected, bedbound, have special care needs, and that you want this information added to your Summary Care Record and included with all referrals and have him/her confirm that whatever information you have requested to be inserted has been added.

When I was in hospital they said they couldn't find my daughter's telephone number in the file they had. Apparently this was a new file started at the point of the ambulance call. I asked them to bring up my GP records as I know it is on there. The nurses said they couldn't access that information! So I asked them to look at my main hospital file, because again it would have been on these records. Again, I was told they had no access to these either! In the end, after my insistence, they did find my daughter's number on the ambulance record sheet, but I still had to tell them to actually add it in the 'next of kin' box. Honestly, it was easier working with SEN children!

 

[alex3619]

So I told the doctors in hospital that I had 'severe M.E.' and they wrote on my notes that I had 'CFS', no level of severity indicated.

One of the issues I think we face, and it happened to me, is that a lot of the medical computer systems have predefined categories. If someone does try to put in ME it might come out CFS. Now I suspect they can make exceptions, in notes if nothing else, but I suspect they don't bother. Severity is ignored, it does not compute. Now this may not always be the case, and you can run into issues with medical bureaucracy ... some clerk decided ME is just CFS.

This is particularly annoying for me as while I fit a diagnosis of ME under most definitions, I am disqualified from a diagnosis of CFS as I had months without chronic fatigue but had no energy to do anything ... I was still disabled. Fatigue only makes sense in these cases when its used in the broadest possible way. Yet while energy deficit often leads to perception of fatigue, fatigue and energy deficit are not the same thing.

In the same hospital system I told them I had both hypertension and severe orthostatic intolerance. They got very cautious about how they treated me in case my blood pressure crashed. The response to these things is not consistent, and its bureaucratic not based on science.

Just so people who are not familiar with my position on ME, I think it will justifiably disappear as a diagnosis once we figure it all out, with well validated objective evidence, but then so will CFS. The only caveat to that might be that CFS is kept around as a junk diagnosis, medicine has a tendency to do that. In the meantime for all their faults, the ME definitions are still superior to the CFS definitions for most purposes.

 

[Dx Revision Watch]

As some of the discussion on this thread revolves around how patients with persistent symptoms post COVID-19 might be coded for in patient records and data reporting, the following posts may be of interest:


NHS Digital is the WHO-FIC Collaborating Centre for the UK and manages the use of ICD-10 (currently mandating ICD-10 Version: 2016) across NHS England primary and secondary care settings.

In situations where there is no definitive ICD-10 or OPCS-4 code(s), clinical coders, NHS bodies, academic institutes and non-coding professionals can submit queries to NHS Digital for advice.

The Query Resolution Database is publicly searchable and gives access to resolutions provided in response to customer queries.

Between March and July, a significant number of queries were submitted in relation to COVID-19 and ICD-10 coding and emergency coding, including a query (Query UID 13409 resolved on July 22, 2020) requesting advice on emergency coding of 'Post covid-19 syndrome'.


You can read the query and the advice received from NHS Digital's Terminology and Classifications specialists in this thread:

Post Covid-19 Syndrome SNOMED coding:

Post #38 https://www.s4me.info/threads/post-covid-19-syndrome-snomed-coding.16833/page-2#post-291242



WHO releases additional Emergency Use codes for COVID-19:

The WHO released an updated version of the ICD-10 international edition in January, this year. This release is designated ICD-10 Version: 2019 and can be accessed via this browser: https://icd.who.int/browse10/2019/en#/

The WHO has stated this will be the final update in the life of ICD-10, other than addition of codes for new viruses, Emergency Use codes and correction of technical errors and typos. Member states currently mandating the international version of ICD-10 for use in their health systems will continue to use ICD-10 for records and data reporting until they are ready to migrate to ICD-11, beyond January 01, 2022.


The WHO has released further Emergency Use codes for classifying consequences of COVID-19 for ICD-10. These codes have not yet been added to the browsers for ICD-10 but were added to the September 2020 release of the Blue ICD-11 MMS browser.

The WHO has posted a notice about these additions which can be read in Post #39 of this thread:

Post Covid-19 Syndrome SNOMED coding:

Post #39 https://www.s4me.info/threads/post-covid-19-syndrome-snomed-coding.16833/page-2#post-291248

 

[unicorn7]

This post has been copied and following posts moved from this thread:
https://www.s4me.info/threads/news-from-the-netherlands.15014/page-2#post-311913

Guido, can you tell me what you think is the best description of true ME?

 

[Guido den Broeder]

Guido, can you tell me what you think is the best description of true ME?

This is how the ME Vereniging Nederland currently describes ME (link: http://www.mevereniging.nl/wat-is-me/).

Myalgic encephalomyelitis (ME) is an enteroviral vascular neuroimmune disease with an incubation period of 3-7 days. In the ICD-10, ME is classified as a brain disorder (G93.3). The guidelines for non-congenital brain injury (NAH) apply. It is estimated that there are at least 14,000 ME patients in the Netherlands.

ME affects the functioning of the brain as well as various other bodily systems, such as the immune and cardiovascular (heart and blood circulation) systems, energy supply and hormone production. In many cases the disease is chronic and it can have an erratic course (Ramsay 1986).

Until 1954 ME was considered a form of polio (Wickman 1905: "superior polio", after the location of the brain injury). With the narrowing of the definition of polio to cases with (long-term) paralysis, an independent designation became necessary. Compared to paralytic polio, brain function disorders are dominant in ME (Hyde, 2020). The name ME (Acheson 1956) correctly indicates that it involves inflammation (-itis) in the brain (encephalos) and spinal cord (myel), accompanied by muscle pain (myalgia).

Initially ME was only known from polio outbreaks. It later turned out that other enteroviruses can also cause the disease. Today the disease is commonly endemic. ME can be diagnosed with a SPECT scan (Hyde 2020). The enterovirus is detectable in the blood in the acute phase, and can later be found in tissue tests (Chia 2005).

Major complaints in ME are: physical and mental exhaustion, poor sleep, muscle weakness and muscle pain, stomach and intestinal complaints, difficulty with attention and concentration, throat, nose and ear complaints, headache, joint pain, dizziness and trouble seeing. Most patients also suffer from one or more additional symptoms such as fibromyalgia, irritable bowel syndrome, candidiasis, hypoglycaemia or B12 deficiency (Stichting ME Research 2015).

 

[Guido den Broeder]

Moderator note. There seems to be a technical problem with a post that had been moved disappearing. It is copied into the beginning of this post, so the two appear together in case it doesn't reappear.
______________

This is how the ME Vereniging Nederland currently describes ME (link: http://www.mevereniging.nl/wat-is-me/).

Myalgic encephalomyelitis (ME) is an enteroviral vascular neuroimmune disease with an incubation period of 3-7 days. In the ICD-10, ME is classified as a brain disorder (G93.3). The guidelines for non-congenital brain injury (NAH) apply. It is estimated that there are at least 14,000 ME patients in the Netherlands.

ME affects the functioning of the brain as well as various other bodily systems, such as the immune and cardiovascular (heart and blood circulation) systems, energy supply and hormone production. In many cases the disease is chronic and it can have an erratic course (Ramsay 1986).

Until 1954 ME was considered a form of polio (Wickman 1905: "superior polio", after the location of the brain injury). With the narrowing of the definition of polio to cases with (long-term) paralysis, an independent designation became necessary. Compared to paralytic polio, brain function disorders are dominant in ME (Hyde, 2020). The name ME (Acheson 1956) correctly indicates that it involves inflammation (-itis) in the brain (encephalos) and spinal cord (myel), accompanied by muscle pain (myalgia).

Initially ME was only known from polio outbreaks. It later turned out that other enteroviruses can also cause the disease. Today the disease is commonly endemic. ME can be diagnosed with a SPECT scan (Hyde 2020). The enterovirus is detectable in the blood in the acute phase, and can later be found in tissue tests (Chia 2005).

Major complaints in ME are: physical and mental exhaustion, poor sleep, muscle weakness and muscle pain, stomach and intestinal complaints, difficulty with attention and concentration, throat, nose and ear complaints, headache, joint pain, dizziness and trouble seeing. Most patients also suffer from one or more additional symptoms such as fibromyalgia, irritable bowel syndrome, candidiasis, hypoglycaemia or B12 deficiency (Stichting ME Research 2015).
______________

Because my reply was moved here, I might as well add our take on other terms.

(1) CFS is not a disease but a research diagnosis for unexplained fatigue and malaise. It is not intended for clinical use and when it is used clinically, it is a misdiagnosis. Patients are ill, but need further medical examination to determine their individual cause. Since CFS research hasn't delivered much of value, its use should best end altogether.
(2) ME/CFS medically makes no sense as (a) these are different types of diagnosis (disease v research only) (b) explicitly exclude each other and (c) have vastly different descriptions. There is merely a historical connection because CFS was introduced to hide some outbreaks of ME in the US (which is exactly why CFS is overly broad and the essence of ME was left out). This disappeared in 1994 with Fukuda.
(3) SEID is not a disease entity as these symptoms are so common that minorities in many diseases and illnesses satisfy the criteria (only about 2% of all SEID patients have ME). It could theoretically serve as a prediagnosis but it really has limited value. There is no need for SEID research.