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

I’m dreading this “ME isn’t the same as CFS which aren’t the same as …” disingenuous nonsense, to move the goalposts and put us back in BSPland and far from CareVille.

I do wonder whether Prof Beaman read the same Times newspaper which clearly stated “ ME, also known as Chronic Fatigue Syndrome” embarrassing he missed that.

 

I know there’s a separate thread discussing “names” but Ramsey’s Disease - game changer. Lots of diseases are named for the Doctor who discovered it, rather than “describing” what the disease is/does/affects. And he was an amazing advocate. An easy solution IMO.

 

I thought it might be an idea at one time, but not now.

National and international healthcare agencies have been actively moving away from naming conditions after people for some time, quite rightly I think. Lots of reasons, but not least because it has the effect of privileging white, male Westerners.

ETA: cross-posted with Trish.

 

Fair enough.

 

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

 

Until you find out they were wrong too. Or ploughed on with research that, with the benefit of hindsight, probably held back progress. Or might have been Nazi collaborators, and also got stuff pretty wrong. I have a diagnosis of Asperger's syndrome, which is a bit awkward.

All names are problematic for the reasons you give, but with neutral ones at least there are fewer issues with inequalities in power and influence, or attachment to individuals because of their personalities as much as their work.

 

I propose Foyal Rree disease. Just swap the first letters of Royal Free, so no specific link to Royal or a UK place. Doesn’t sound like anything in particular. Doesn’t describe the illness. I’ve got “FR” easy to search on the internet.

 

I notice that immediately before the ME/CFS term in the coding is Post viral fatigue syndrome

How does that differ from ME CFS ? Why isn't it just a subcategory relating to onset trigger?

"G93.31 Postviral fatigue syndrome

G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome"

 

The vast majority of post viral fatigue syndrome cases remit over a period of months. I had post-EBV fatigue and have had post-Covid fatigue but I do not think I have ever had ME/CFS. I think the ME/CFS diagnosis implies more - that the resolution of a normal PVF response has failed to occur, or gone the wrong way, downhill. To me that is a crucial part of understanding ME/CFS - why it relapses or fails to remit.

That is the main reason for the six month diagnostic criterion but that can also cause confusion because people with ME/CFS in the first six months are still people with ME/CFS - it just hasn't become clear that is definitely so.

 

I was initially diagnosed with PVFS/CFS in 1992 by an M.E doctor who specialized in diagnosing patients. My current diagnosis on my medical file is CFS.

 

Thank you for the explanation
I had two episodes of 6 month fatigue/malaise in my early twenties after nasty viruses, at least one of which was thought to be EBV/Glandular Fever. Presumably they got coded as such.
With hindsight the ME Service Dr who diagnosed me said that was the beginning of my ME.

 

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.

 

it's a good bit of lateral thinking there to mention a few other conditions and do the thought experiment of whether there could be an appropriate and useful alternative for these ie if you put them into the 'naming machine criteria' of today, would what it come out with be OK?

And wouldn't be derogatory or stigmatic. There is at least something grown-up about names where someone in the office could say they have Parkinsons and someone who didn't know it already would have to look up the full information in context. There isn't enough information to 'guess'. It doesn't present a 'label' for the person.

Imagine if something like lupus - which can be vastly different in different people, has times of flares with different symptoms, attacks different organs, and can be atypical - had to be named this way early on. It could present a label that is associated with 'what will happen in the future to someone else', or be giving away some pretty personal information about someone?

And then imagining that most conditions necessarily start out with not knowing the cause - although I think that is a red herring used by BPS because technically the cause isn't known in so many because it's genes, environment etc - or biological mechanisms, to a sure enough extent that name won't change. The nature and point of science is that like the earth goes round the sun vs sun going around the earth things will be all very sure until a new technique shows it's actually not that at all.

Which to be fair is an almost exact example of what CFS is. When you consider whether fatigue, and certainly where certain researchers have taken the description and definition of that currently, doesn't seem accurate.

It isn't that we are 'too tired to do things', it's that 'exertion (both to and by) causes post-exertional malaise' and can lead to deterioration

(deterioration is never mentioned, but I feel it needs to be, and yet I'm aware one reason that will get cited is 'it hasn't been proven': well what 'met the bar for that' with other conditions that might have similar progression if mismanaged?)

Anyway that distinction is quite significant. And it has underlied a major issue with how we are seen and treated: about how we can be got to do things. And it plays into priming people to see us as 'we seem tired' rather than 'ill'. And the way people would approach someone lethargic vs had flu is quite different.


Is it really technically 'chronic' in the way it is understood: yes, because it is ongoing over someone's lifetime potentially, no because unless you are in rolling PEM and even when you are it isn't some 'consistent entity' - is that what 'chronic pain' is like for example.

 

Anyway to return to my original point: isn't this name thing a bad idea of un-thought-through consequences?

No wonder everything 'new' has ended up being bunged withe the prefix 'functional'

- as technically it will nearly always be 'we don't know how it works yet', as it would be pretty disturbing if there was a big structural part of the body that a failure/injury hadn't already been mapped and named for?

The more I think of this the more it seems riddled with catches.

Where it might have been useful back in the day people were discovering the appendix or adrenal existed surely now the gaps are likely to be a lot more complicated, 'small' in the sense of being cells or nerves, system-related etc. Which is going to take a lot of unravelling, and tricky names that won't be there at the start

And there seems to be a move towards homogenising or lump-and-dump on symptoms and removing specificity. SO unless there is some specific 'it presents with a black big toe' - and even then that has a dilemma if the most life-changing symptom was PEM - only so many illnesses can be forced to change 'PEM' to 'fatigue' to suit that genericising preference before you've got a ridiculous number using that in their name. Most of which probably both have a different type, different collection of other issues and need someone to look in different places for the cause.

Of course there wasn't a critical mass even in pwme of understanding it was PEM until a good way in, and something needs naming early on to get going, so the whole thing in itself creates a catch 22 that will almost certainly lead to either numerous name-changes or misleading disease names?

 

I agree we'll likely only get a chance once, when we have a stronger lead on pathological causation.
But perhaps once we have that lead you could hope the stigmatisation would start fade anyway.
That said I really, really cannot stand CFS it's so inaccurate a term.
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.
Maybe a clever acronym for the lumped together MECFS could work.
In my own little fantasy world I always fancied Systemic (or Neuro ) Immune System Exhaustion Syndrome (or Disease) so SISES or NISES or at least something a bit more around the medical neuro-immune axis of it rather than making fatigue central as it's so subject to misunderstanding.
But of course that's flawed and imperfect too as is any option and I agree that realistically it's nigh on impossible for anything to get broad agreement and there is a perpetual worry about reclassification as a FND subtype.
Nice as an idle fantasy though.

 

To avoid any possible confusion:

The above is extracted from the coding structure for the US's ICD-10-CM which is developed and managed by NCHS/CDC. It is not from the WHO's International Edition of ICD-10, as used in the UK and many other member states.

The US's coding was revised in 2022 to:

G93.3 Postviral and related fatigue syndromes
Use additional code, if applicable, for post COVID-19 condition, unspecified

(U09.9) Excludes1: chronic fatigue NOS (R53.82) neurasthenia (F48.8)

G93.31 Postviral fatigue syndrome
G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome
Chronic fatigue syndrome ME/CFS
Myalgic encephalomyelitis

G93.39 Other post infection and related fatigue syndromes


The WHO's coding structure for ICD-10 remains:

G93.3 Postviral fatigue syndrome
Myalgic encephalomyelitis

with Chronic fatigue syndrome listed in the Index and coded to G93.3.



For ICD-11, the structure is:

8E49 Postviral fatigue syndrome

Parent

• Other disorders of the nervous system

Inclusions

• chronic fatigue syndrome
• myalgic encephalomyelitis

Exclusions

• Fatigue (MG22)

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


For a history of the development of the coding of the terms: PVFS; BME; CFS in the WHO's ICD-9, the US's ICD-9-CM, the WHO's ICD-10 and the US's ICD-10-CM from 1975 to March 2001 see document:

A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases
Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards, March 2001: https://dxrevisionwatch.files.wordpress.com/2009/12/icd_code-cdc-march-2001.pdf