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

[Dx Revision Watch]

My impression was SEID never took on because it sounds to the uninformed like Dr speak for a systemic laziness disorder so I can imagine that being used to stigmatise us even more...

One of the reasons why the IOM Report's suggestion for the term "SEID" wasn't widely accepted in the US is because none of the IOM Report's sponsor agencies adopted the suggested term, preferring the conjoined term, "ME/CFS" (which since 2022 has been codable within ICD-10-CM under sub-code, G93.32).

It is possible, however, for clinicians, coders and insurers to code for the term within the US as "SEID (systemic exertion intolerance disease)" has been added by NCHS/CDC to the ICD-10-CM's Index, where it is indexed to G93.32.

 

[Dx Revision Watch]

I can’t imagine Parkinson’s Disease ever getting renamed…

WHO ICD-11 Reference Guide policy on use of eponyms and use of acronyms:

 

[Lou B Lou]

Hi @Dx Revision Watch - can you include the exclusions for the ICD10 G.93.3.

It drives me nuts when even some patients call ME 'Chronic Fatigue'

 

[Ash]

I think we should be doing exactly the opposite, and fighting to hang on to ME/CFS until we know more about it.

ME/CFS has the advantage of being recognised and in use. It's already beginning to look as if we might have a battle on our hands against coding it as FND in order to get around the Nice guidelines, and changing it to another meaningless name—which won't attract support from all patients, no matter what it is—just creates opportunities to exploit divisions in the community.

Yep.
I’d like to ditch the CFS as soon as possible, but since so many people meeting ME criteria have that as their original diagnosis that would leave them in a vulnerable position if doctors refuse to convert this to ME. So probably best we can do till we get a biomedical breakthrough and can look at where that points us name wise.

 

[Dx Revision Watch]

Hi @Dx Revision Watch - can you include the exclusions for the ICD10 G.93.3.

It drives me nuts when even some patients call ME 'Chronic Fatigue'

WHO's ICD-10:

The Title term: G93.3 Postviral fatigue syndrome (which includes the inclusion term: Myalgic encephalomyelitis and the G93.3 index term, Chronic fatigue syndrome) is specified as an exclusion under F48.0 Neurasthenia and its inclusion term, Fatigue syndrome:

G93.3 is also specified as an exclusion under the Symptoms, signs chapter R53 Malaise and fatigue:

There is no term, "Chronic fatigue" as such within ICD-10 - only "Fatigue syndrome" (F48.0) in the Tabular List and "Chronic fatigue syndrome" (G93.3) in the Index.

In ICD-10, there are no reciprocal exclusions for F48.0 and R53 under G93.3 Postviral fatigue syndrome.

However, for ICD-11, there is an exclusion for Fatigue (MG22)* under 8E49 Postviral fatigue syndrome and under 6C20 Bodily distress disorder (which replaces and subsumes the retired ICD-10 term, Neurasthenia), all three terms: Postviral fatigue syndrome (8E49); Chronic fatigue syndrome (8E49); Myalgic encephalomyelitis (8E49) are specified as exclusions to Bodily distress disorder.

*ICD-10 Title term "Malaise and fatigue" has been replaced by "Fatigue" for ICD-11.


There is this cautionary note for clinicians and coders in the National Clinical Coding Standards ICD-10 5th Edition (2024):

Edit: Note there remains a code for "Chronic fatigue, unspecified" in the US's ICD-10-CM at R53.82 which has an Excludes1 for the following:

chronic fatigue syndrome (G93.32)
myalgic encephalomyelitis (G93.32)
other post infection and related fatigue syndromes (G93.39)
postviral fatigue syndrome (G93.31)

with a reciprocal Excludes 1 for "chronic fatigue NOS (R53.82)" under G93.3 Postviral and related fatigue syndromes.

 

[rvallee]

I'm not really sure where best to place this comment given that the discussion has veered away from Maeve and the inquest in the thread (https://www.s4me.info/threads/maeve...bout-her-life-death-and-inquest.31707/page-87), but this whole confusing mess really highlights the value of neutral names, such as those using a person's or place's name, and how something important was lost from moving away from this paradigm.

Because it is fundamentally the same. Disease names used to be given without knowing enough about its pathology, they literally did not have the technology to do so. Hence etiologically neutral names. It avoided speculating about pathology only to have it cause exactly the mess we are facing. Which is the same: how to name a disease where the fundamental disease process is unknown.

And basically right now we are facing the equivalent of a dividing by zero error. Everything is stalled in a loop because there is no proper name accounting for its etiology, but this is the only way names are accepted. Which is why syndromes exist, but they are variously taken very seriously, or mocked as whiny nonsense based on who knows what. And then there's the even worse disaster of CFS, which is almost always botched even worse by dropping syndrome entirely from it.

But my guess is that there is no resolution to this. Medicine has decided that names can only directly point to the pathophysiology. Except it makes it extremely difficult to figure it for diseases that have no name. What an absolute mess that exists for no good reason whatsoever. Again it's the intransigence, the complete lack of a plan B, that royally fucks tens of millions of lives without any possibility of a resolution that doesn't involve figuring out the etiology, which requires being taken seriously, which requires a name people understand and so on.

Damn Catch-22 disease. Still the best name, regardless of everything.

 

[Theresa]

I think ME is a bad name anyway just because of the initials, for someone who hasn't heard of it before the first thing it suggests is the person is thinking too much of themselves as in me time or mememe

 

[Saz94]

@Jonathan Edwards do you think we should change the name of this forum, then? Science For ME/CFS? I'm not trying to be funny, I genuinely see your points about how the name "ME" is viewed.

 

[Jonathan Edwards]

I don't particularly like the idea of changing the forum name. Names of organisations are often designed to be short and eye-catching. Sometimes I think that goes too far as in 'Versus Arthritis', which used to be the Arthritis and Rheumatism Council and then Arthritis Research Campaign. It deals with a lot more than arthritis but nobody was sure what rheumatism meant.

Although our name is primarily there to inform potential patient members I made the point that doctors are unlikely to take 'ME' charities seriously so maybe we do have a problem. But the name comes with a subtitle: Where science and the ME/CFS community meet. Moreover we are not wanting funding, so the situation is not quite like a fund-raising charity.

Both Charles Shepherd and Sonya Chowdhury, who essentially do all the public interface work for their charities, tend to always talk of ME/CFS now. And of course the lack of interest by doctors in ME charities goes much deeper than just the names. But I think there would be a case for changing to Action for ME/CFS (since nobody calls it 'afme' anyway).

A feature of ME/CFS politics, maybe like the Lord of the Rings, is that one can be surprised about what 'friends' and 'enemies' do. I have come to think that doctors and professionals who talk of ME may at times be as much enemies of the science and the solutions to care as those who talk of CFS. I sense that hovering in the background behind some of these charities are some old attitudes that fuel the scepticism of medics. But things have change a lot since I joined Phoenix Rising ten years ago and the deeper problems lie elsewhere - mostly at the Royal College of Physicians it seems.

 

[Ash]

I think ME is a bad name anyway just because of the initials, for someone who hasn't heard of it before the first thing it suggests is the person is thinking too much of themselves as in me time or mememe

Yeah. I remember talking to someone about this when I first got ill how uncomfortable I felt using it, for this precise reason. They asked me what would you like it to be called. I said don’t know, I just don’t wanna have it at all.

Also from a practical point of view if you’re well enough to do social media advocacy you can’t tag it without at least adding a reference to CFS or it becomes unsearchable even if you make sure to do it properly with the dots for M.E.

Exactly as you say you’re, just gonna get something self-oriented of some variety or other from the mountain of more standard uses of uppercase me. It’s fine for a little word play for us occasionally, but mostly lends itself for other less useful purposes.

 

[Peter T]

Personally I worry that we risk wasting too much advocacy effort by endless debates on the name of our condition. Until we understand the aetiology better we will not be able to achieve a widely accepted label. It seems to me that ME/CFS is a pragmatic compromise until we have the evidence to rest on something better.

Personally I use ME when referring to myself or in forums such as here, however I now use ME/CFS when referring to our condition in the abstract.

 

[Ash]

I don't particularly like the idea of changing the forum name. Names of organisations are often designed to be short and eye-catching. Sometimes I think that goes too far as in 'Versus Arthritis', which used to be the Arthritis and Rheumatism Council and then Arthritis Research Campaign. It deals with a lot more than arthritis but nobody was sure what rheumatism meant.

Although our name is primarily there to inform potential patient members I made the point that doctors are unlikely to take 'ME' charities seriously so maybe we do have a problem. But the name comes with a subtitle: Where science and the ME/CFS community meet. Moreover we are not wanting funding, so the situation is not quite like a fund-raising charity.

Both Charles Shepherd and Sonya Chowdhury, who essentially do all the public interface work for their charities, tend to always talk of ME/CFS now. And of course the lack of interest by doctors in ME charities goes much deeper than just the names. But I think there would be a case for changing to Action for ME/CFS (since nobody calls it 'afme' anyway).

A feature of ME/CFS politics, maybe like the Lord of the Rings, is that one can be surprised about what 'friends' and 'enemies' do. I have come to think that doctors and professionals who talk of ME may at times be as much enemies of the science and the solutions to care as those who talk of CFS. I sense that hovering in the background behind some of these charities are some old attitudes that fuel the scepticism of medics. But things have change a lot since I joined Phoenix Rising ten years ago and the deeper problems lie elsewhere - mostly at the Royal College of Physicians it seems.

I fully understand your point about the aversion of the medical profession to ME. I also understand that doctors who use ME aren’t necessarily going to be working for our benefit. Latter not the names fault though.

I don’t think we need to re-up CFS.

Until work is done CFS will remain as an active term on people’s medical records and it’s all over the main charities literature for this purpose.


But adding CFS to an existing charities name would imply the development of high level of approval of the term itself. A term that been brought into being right from the beginning as a minimisation strategy and has an unbroken history of usage in this regard, as part of a programme of exclusion from medical, psychological and social care.

 

[Jonathan Edwards]

I agree that Chronic fatigue Syndrome should not be revived in full but my hope has been that the acronym ME/CFS can be accepted as not really standing for either myalgic encephalomyelitis or chronic fatigue syndrome, since neither is a good name. but as a 'word of art' in its own right in the way that SLE does not meaningfully stand for systemic lupus erythematous any more.

One that been brought into being as a minimisation strategy and has an unbroken history of usage in this regard and a programme of exclusion from care.

Is this fair though. My understanding from MEpedia is that CFS was coined to cover the Incline Village outbreak. At the time I guess the name choosers rightly saw that whatever triggered Incline could not be assumed to have anything to do with the Royal Free bug so more generic name was needed. And at around this time, to be fair, people like Wessely and Lloyd were measuring lymphocytes and HLA genes and muscle power and Richard Edwards was looking at metabolism and muscle histology.

They found nothing. The mistake was to assume that the condition must be perpetuated by psychology. But that did not lead to exclusion from care, just the wrong care. Anyone with a diagnosis of ME would simply have been ignored as having funny ideas since at that time (1980s) doctors did remember that ME was a name for an acute neurological illness that never got pinned down and had nothing specific to do with what we now call ME/CFS. Care for 'ME' came only from a few private physicians who handed out a range of things they probably shouldn't have, like B12 injections steroids and anti-virals.

 

[Sly Saint]

My understanding from MEpedia is that CFS was coined to cover the Incline Village outbreak. At the time I guess the name choosers rightly saw that whatever triggered Incline could not be assumed to have anything to do with the Royal Free bug so more generic name was needed.

There was a lot more to it than that which has been covered in depth before, not least the US health insurance angle.

eta: a search here using the tag 'history' brings up a number of relevant threads.

 

[JemPD]

Personally I worry that we risk wasting too much advocacy effort by endless debates on the name of our condition. Until we understand the aetiology better we will not be able to achieve a widely accepted label. It seems to me that ME/CFS is a pragmatic compromise until we have the evidence to rest on something better.

Personally I use ME when referring to myself or in forums such as here, however I now use ME/CFS when referring to our condition in the abstract.

Yes same for me. I use ME in the 'vernacular' between myself and my friends/family etc - mainly because I cant bring myself to, in effect, tell them I cant have a bath because I'm too tired (which is what the layman interprets fatigue to be). I use ME/CFS for advocacy or discussing in the abstract, because I think its the best we've got.

And I use CFS when talking to Drs.
I detest it, and it makes me feel nauseated every time, but I do so for pragmatic reasons after experiences of an increase/decrease in respect I've observed from Drs in the NHS when using CFS or ME.

 

[Mij]

I tell everyone in general that I have a medical condition or chronic illness that negatively affects my energy/stamina. Now *that* they understand.

 

[NelliePledge]

Personally I worry that we risk wasting too much advocacy effort by endless debates on the name of our condition. Until we understand the aetiology better we will not be able to achieve a widely accepted label. It seems to me that ME/CFS is a pragmatic compromise until we have the evidence to rest on something better.

Personally I use ME when referring to myself or in forums such as here, however I now use ME/CFS when referring to our condition in the abstract.

Well put Peter

 

[EzzieD]

I tell everyone in general that I have a medical condition or chronic illness that negatively affects my energy/stamina. Now *that* they understand.

Yes, similarly I simply tell strangers I have a 'chronic disabling post-viral syndrome' that limits my strength. I would like to say ME but because of the stigma now attached to what was once a respectable name before the psychs pooped all over it, I don't use it with strangers. And I will NEVER say I have CFS, ugh.

 

[Mij]

I saw a specialist a few months ago for a procedure and she asked if I had any medical conditions. I hesitated because I didn't want to say CFS, I said ME(the long version). I knew she wouldn't know what that was. So threw her arms up in the air and said 'give me the short form', so I said ME/CFS. I have no idea what she wrote down but it was quick

 

[Jonathan Edwards]

I think it is interesting to re-read this five -year long thread.

I would like to say ME but because of the stigma now attached to what was once a respectable name

As far as I am aware ME was only ever a 'respectable name' for the acute contagious illness with apparent focal neurological signs seen at the Royal Free and thought perhaps also to have occurred in Iceland and California. The medical profession, as far as I know, has never officially seen 'ME' as the name for what we call ME/CFS - a long term disabling condition with PEM.

A few physicians, especially in the UK, starting using 'ME' to describe people with ME/CFS but I am fairly sure that most of them thought they were diagnosing the original Royal Free illness, which as far as we know they were not. I think some GPs may have joined in using 'ME' but probably without knowing quite why. Patients thought they were getting a bona fide diagnosis but the vast majority of doctors had no clear idea what was being referred to.

It would be interesting to know on what basis the WHO decided to include ME as a diagnosis and call it a neurological disease, maybe around 1970. I think it highly likely that they were following the original idea of a specific contagious illness with apparent focal neurological signs.

ME has never appeared much in textbooks. The first attempt to define ME/CFS may have been Fukuda 1994, which called it CFS. Then CCC in 2003 made it ME/CFS. ICC tried to make it just ME but clearly because some of the 'experts' still thought they were dealing with some for of neuroinflammatory disease, as at the RFH.

There is also a view that ME is really a disease of energy metabolism, but I don't think it has ever been defined as such and we don't have much evidence support for that.

I agree with Peter that spending a lot of time on the name seems pointless. On the other hand, the considerable media coverage at the moment and the calls for action to Streeting and so on demonstrate just to what extent the different ideas of what ME means confuse any useful advocacy.