Renaming the disease: who calls the shots?

One further caveat, in individual countries there might be government agencies that set the rules leading to nomenclature changes within a country, and a smaller chance of the ICD (and even DSM) setting an influential claim to a new name. These will not be enough for universal name change though.

 

There doesn't really seem to be a process for this, other than a popularity contest, aka "consensus". But we have to meet people half-way who recognize nothing of it, so it's not realistic. You can't meet delusions mid-way.

Personally I think that everything needs a total reset, I doubt much remains of the current labels and criteria once we know the basics, the pathophysiology. Chronic illness is diverse, unfixed and crosses over and fluctuates too much to fit the traditional definition of a disease with unique, permanent features. It's probably closer to a bunch of injuries, than a unique disease, or unique disease processes.

In my case depending on the time, and of course depending on the MD looking at the problem, I would have fit, then not, then again, the various criteria for most of the various co-morbidities. The standard process simply doesn't work here, this is too different. It needs a new paradigm.

Likely, much of this will fall under a single umbrella that makes up its own specialty, and will essentially render psychosomatics obsolete, a huge war in its own right. It will likely require new working definitions for what is a medical condition, and will bruise so many egos that it will be many years until it amounts to anything coherent.

Anything until then we will pretty much have to do it for ourselves, with the help of the tiny % of MDs who get it and are motivated to walk unbeaten paths. Maybe there will be a few key treatments that will solve most of the difficulties, but we will have to fight for every tiny bit of it until the economic calculations clearly show it's cheaper to just do the damn work and get millions back to living.

 

But presumably having been thought up by some random person on the spur of the moment and sounded good to enough people to finally get ratified. We have no guarantee that the ratification was actually what determined the usage. A few virologists in a pub had probably already reckoned it would do!

Committees are constantly coming up with names that in the end nobody uses.

 

I wonder whether, once something of the underlying pathology is known—and has gained enough scientific acceptance—many patients will be so concerned about it. Once the bogeyman's dead, attention and campaigning will be turned towards what can be done to improve lives and prevent illness.

It'll probably be given some tortuous scientific name, which will become an acronym and then likely be amended or recategorised as more is learned. But of itself, it should carry little or no emotional baggage. After all, people diagnosed with diabetes mellitus type 1 don't seem to care much what it's called; what matters is the burden of living with it, and inequalities in the provision of modern tech that can streamline management of it. Common names change too, I don't think I've heard anyone call DM "sugar" since the 70s, but it seemed ubiquitous when I was a child. The name ME may persist for quite some time, but I imagine it will eventually fade out of everyday use.

I look forward to that day, even though I'm unlikely to see it, because it will mean this disgraceful chapter in the history of medicine is over.

 

Hopefully when medical science finally figures out exactly what ME/CFS actually is, the new name will reflect what the problem is and everyone will be in agreement.

 

Do you know why this change happened? Here it is univerally called "sugar disease" by everyone, including doctors, even though the term diabetes exists. It is just a lot less common to hear it.

 

Interesting, I don’t think I have heard it called the ‘sugar disease’ since I was a teen some fifty years ago. Indeed I had forgotten that name until reading it here.

 

I wonder if in fact the use of 'he's got sugar' was a shortening of 'he's got sugar diabetes', or strictly speaking diabetes mellitus rather than diabetes insipidus.

 

I was in nappies 50 years ago and it’s completely new on me.

 

I would think that in the particular case of poorly understood chronic illnesses, any advance in the understanding of their pathophysiology that yields a diagnostic biomarker would also lead to a relatively quick renaming based on it. It is not only that patients are keen to step away from the name CFS; physicians intensely focus on biological markers (note that this is true regardless of how closely they adhere to the biopsychosocial model) and would surely be pleased to have one for ME/CFS, if just for the sake of convenience.

However, the official process of renaming through the WHO, SNOMED and so forth might take quite some time, and then the widespread adoption of the new name will take longer as the teaching of the pathophysiology of the disease must change in medical schools — so it could take ten years, give or take.

Edit: to answer the question directly, it seems to me that patients have little to no leverage for renaming a disease. Rather, it happens when a consensus among researchers and physicians is reached. We have seen ME advocacy organizations in the US successfully lobby for the inclusion of a specific code for ME/CFS in the ICD-10-CM, but they did not come up with a new name — to my knowledge, the term ME/CFS (not CFS/ME) was coined by the group of clinician-researchers who developed the Canadian consensus criteria in 2003.

 

Yes, I think so. If an adult was talking about it rather than just referring to it, they'd often call it sugar diabetes.

I'm not sure what drove the change, but I think the usage may be a generational thing. Those who called it sugar were my parents' age and above, so born in the 1920s/30s or earlier. I was born in the late 50s, and I don't think it was ever common among my generation; by the time we reached adulthood, there'd been a shift to calling it diabetes. Maybe it sounded more like a medical term, or somehow more educated? (Although, as Jonathan points out, using the word diabetes alone is less accurate/specific than sugar diabetes.)

 

Yes, my guess from experience in clinic is that 'sugar' was used in the UK by people born before around 1910 and perhaps a decade or so later. Insulin became available in the late 1920s. Diabetes charities were set up in the 1930s. Diabetes mellitus became vastly more prevalent than insipidus partly because people with severe disease could be kept alive with insulin and partly because of increasing numbers of people being overweight in middle age.

 

Of course, charities' names entering into common parlance will explain a lot, as well as the transition from occasional conversations about the young relatives who died from it, to the ongoing presence of a disease somewhere in most people's lives. I hadn't thought about that.


Apologies, I've inadvertently taken the thread off topic (again). I'm just interested in how terminology changes in social use, and the possible reasons behind it. The Spastics' Society used to loom large in our family's life, and of course that name was changed because in Britain some people began using the word "spastic" as an insult against people with any visible impairment or difference. But it's more difficult to think of a name that's in quite the same category as ME or CFS, because it's attitudes to the disease itself that are the problem, and that came more from the medical establishment than a section of society that enjoys causing offence.

 

Retardation? Frigidity?

 

Not in position to read this at the moment but there were two times in the last 25 years there were possibilities the name might be changed.

Around 2001-2003, there was a name change initiative associated with, I believe, the US (federal) CFS co-ordinating committee (CFSCC). They consulted internationally.
The initial proposal was NEIDS (neuro-endocrine immune dysfunction syndrome).
After some opposition, this was refined to CNDS (Chronic Neuro-endocrine immune Dysfunction Syndrome) with ME as a subgroup. I think GWI was also a subgroup?

Then the IoM report recommended/suggested SEID, Systemic Exertion Intolerance Disease, in 2015.

 

Scope (formerly the National Spastics Society) is an interesting case - the name change was closely followed by the constitutional change to a membership model (claims to be the first major disability charity to do this) and part of a process of modernisation, astute marketing and disability empowerment. In contrast Mencap which has a trustee only model (and currently not a single representative of its target population on the board) has been resistant to changing its reference to 'mental handicap' which many disability activists see as having far too many negative connotations (handicap is what society does, handicap is for race horses etc).

Removing a societally negative reference from its name clearly worked for Scope, however there is a different approach to dealing with minority derogatory naming which has clearly worked in at least one case, and that is 'taking ownership' as has been relatively successfully, if not uncontroversially achieved with the word 'queer'. Looking to alter public identity by a name change can work where there is tight control of the name - as in a company brand, where there is a resistant population that is able to retain ownership of the earlier name (as in medicine), then challenging that ownership may be a better strategy.

There may never be a perfect name for our disease(s), even with identification of biomarkers, it may be that there is no one single ME/CFS but a range of illnesses that are identifiable with multiple but distinct biomarkers, or a range of precursor conditions, infection, genetic, environmental etc that predicate distinct types of ME/CFS that are nosologically separate. It's why I think that while ME/CFS is not perfect - no name ever will be, as a name/brand/identity ME/CFS is 'good enough' and the most effective advocacy strategy is to claim it and define it in patient centred terms.

 

Careful, you can get moderated for saying that.

 

I hate the name CFS and ME has been hijacked to mean non progressive fatigue or hypochondria. Whatever new name we do get, it's founding document must explicitly state that it is not just a new name for CFS. They made that mistake with SEID and now the Wikipedia entry for SEID was vandalized so it redirects to CFS which is seen as hypochondria.

 

For some time now I have believed that those who deteriorated from exercise or exertion should have their own separate diagnosis. See: https://www.s4me.info/threads/ltse-long-term-symptom-exacerbation-type-2-me-or-new-diagnosis.27945/

It doesn't make sense to bundle all sorts of riff raff under one diagnosis, if somebody improves with exercise or doesn't deteriorate, it is not fair to patients such as myself who get treated as if we are delusional for having our symptoms. The whole thing is a real mess right now and urgently needs improving.