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Chronic Epstein Barr Virus, Systemic Exertion Intolerance Disease, Chronic Fatigue Syndrome, Myalgic Encephalomyelitis. What do all of these have in common? In fact, they are all names for the same illness. But why does one illness have so many different names? And why does the name of the illness matter? Well, like almost every other aspect of ME/CFS, its history is filled with controversy – not least about which name to use. And what better time to talk about the history of ME/CFS and its name, than in ME awareness month!
The different evolutions of ME/CFS
To demonstrate just a few of the different names, here is a brief history of some of the key outbreaks of ME/CFS.
Neurasthenia
ME/CFS has been traced back to as early as 1750 and a disease known as Febricula (or Little Fever) which was hard to diagnose and shared many symptoms with ME/CFS. It has been suggested that Florence Nightingale actually suffered from this illness. There is also a potential connection to ‘hysteria’, which, in the context of female pain makes an interesting study and is a post that I will write one day! But it was only in 1869 that it became a more well-known illness, under the name Neurasthenia, so-called by Psychiatrist George Beard. This illness seemed to disproportionately target women, and it was characterised by much the same symptoms as ME/CFS: fatigue, exercise intolerance, headache, gastrointestinal issues etc. It also seemed to be triggered by infections. However, this term fell out of use mainly due to a large divide within the medical community about whether this was actually a physical illness or not. Sound familiar?
A handful of epidemics
Between this time and 1955/1956, there were several epidemics that resulted in outbreaks, particularly in nurses and doctors, with symptoms of ME/CFS. A couple of these were an outbreak at Los Angeles County General Hospital, USA, in 1934, and one in Akureyri, Iceland in 1948. Both of these caused many people to become chronically ill, and this, at the time, was put down to the patients having post-polio sickness (poliomyelitis) but was later discovered to not quite match: whilst there was muscle weakness, it was not muscle wasting as it is in Polio. These outbreaks led to the creation of several different names for ME/CFS including Akureyri’s Disease, and Atypical Poliomyelitis.
Myalgic Encephalomyelitis
It wasn’t until 1955, that the term Myalgic Encephalomyelitis was introduced. This came after a large outbreak in the UK, known as the Royal-Free outbreak. This outbreak caused around 300 members of the hospital staff at the Royal Free to become sick with, once more, similar, but unexplained symptoms. The name ME was created here to explain the effects of the illness on the muscles, nerves and brain. It was at this point that one of the more detailed diagnostic criterion was created. This name has continued to come in and out of use ever since, although its use is more widespread in Europe than in the other places.
Yuppie Flu and Lake Tahoe
From 1984 onwards, there were continual cases showing the same so-called ‘unexplained symptoms’ in large numbers of patients in Lake Tahoe, Nevada, and in areas of New York. These tended to occur in so called ‘yuppies’ (‘young upwardly mobile professionals’), and the lovely, rather derogatory name ‘yuppie flu’ comes from these outbreaks. For the next few years, across several different conferences about this illness, several different names were used: Chronic Epstein-Barr Virus (CEBV), Epidemic Neuromyasthenia, Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). Each of these names was chosen to forefront certain aspects of the illness considered important by those proposing it. However, none of these names were really adequate, most of them missing certain vital elements of the illness. So in 1988, the term Chronic Fatigue Syndrome was adopted, and is, in the USA, still used by the majority of medical professionals. This name was eventually chosen above more medical sounding names because it was claimed that there was not substantial and definitive proof of one specific cause of the illness.
Forefronting of Chronic Fatigue Syndrome
In 1990, CFS received a lot of attention in the mainstream media. However, much of this focused on the idea that CFS was a psychosomatic illness caused by burnout or malingering. So it wasn’t very positive or particularly helpful in terms of providing recognition of the illness. Since this point there has been almost continue discussion and debate about which name to use for the illness.
When asked, much of the patient community feels that Chronic Fatigue Syndrome is a totally inadequate name for the illness. This is echoed by many professionals who work with CFS patients, and has led to several position papers, and official hearings discussing a name change, and diagnostic criteria (which is linked closely to which name is used). Currently, many choose to use the name ME/CFS, but many other names are still very widely used, and when we add the possibility that some versions of Long Corona may be the same thing again, it looks like this issue is far from being solved.
But what is in a name?
‘What’s in a name?
That which we call a rose, by any other name would smell as sweet.’
This popularised Shakespearean quote from Romeo and Juliet suggests that the name that we use for something doesn’t really change the nature of the thing. So why is the name of this illness so important?
Well, in Romeo and Juliet, we see that the name Montague is, actually, critically important, because it changes the ways in which Romeo and Juliet, and their families and friends, are perceived – and therefore how they are treated. In a similar way, the name of ME/CFS is very important because of the way the illness is perceived by those who don’t know very much about it.
Chronic Fatigue or Chronic Fatigue Syndrome
One of the big problems with the name CFS is that it is so very close to chronic fatigue. Chronic fatigue is a symptom of numerous illnesses: cancer, stroke recovery, endometriosis, to name a few. But this is not the same thing as CFS, which has its own set of symptoms, alongside fatigue and post exertional malaise. The issue is that when using a name so similar and non-determinate, that misses a lot of other defining symptoms of the illness, you minimise CFS to being about fatigue only, and the name also gets used by a host of other people, who do not actually have CFS, but do have chronic fatigue. This makes it very confusing to talk about, and confusing for professionals dealing with patients, who have not been educated about CFS specifically. It also unnecessarily simplifies, minimises and confuses the illness.
In fact, my GP and I got in a bit of a pickle about this recently, when I was contacting him about the corona vaccination. I heard, when calling the clinic, that my ME diagnosis was not in the doctor’s file. So a few days later, I called the doctor and we both agreed that my chronic fatigue diagnosis was on file, so it was all good. But then, when I messaged again with new information about the position of people with ME, he replied and was a little confused because on his files it appeared that I did not have ME (having been diagnosed elsewhere). Eventually, we got it all corrected, but by not being specific that I was talking about Chronic Fatigue Syndrome, or ME, we had, inadvertently, been talking about different illnesses, and I almost missed out of my corona vaccine!
‘But I’m tired too’
The name Chronic Fatigue Syndrome does not sound particularly severe. It is very typical, when telling someone that you have CFS, for them to reply, ‘Oh, I get tired too’. This doesn’t happen when your illness has a more medical sounding name! Chronic fatigue is entirely inadequate in conveying the severity of this illness, which can leave people completely paralysed, unable to eat, see light, or speak, for years on end. The result of having such an inadequate name, is that the illness is taken less seriously by those who hear about.
There was a study done in 1999 at De Paul university which discovered that medical trainees were less likely to perceive CFS as a severe an illness than ME. They found that patients with identical case histories were treated differently based on the name they gave the illness. Those cases labelled as CFS were more likely to be treated as an illness without a medical cause, and more likely to be prescribed psychotherapy or psychotropic drugs, than those which were labelled ME. A large number of medical trainees thought patients with CFS were likely to fully recover, whereas a far smaller number of trainees thought those with ME would improve.
ME/CFS
In general, when I write about it, I use the term ME/CFS. This makes it very clear what I am talking about and uses both the most widely used terms. For me, the term ME conveys more of my experience, and conveys its severity far more effectively. When I think about how much I have lost, and how much I struggle because of my illness, calling it Chronic Fatigue Syndrome just doesn’t really do it justice. However, I am sure other people will feel differently about this. What is important is that, when using the term ‘chronic fatigue’, specifically about this illness rather than generally, you remember to add the word syndrome – otherwise, it can get you in a bit of a pickle! If you have ME/CFS, what do you call it?
Thanks for reading the post. This month is ME Awareness month so I will be sharing a lot of information about ME on my instagram and facebook, so feel free to check that out. If you are able to and feel like it don’t forget you can donate a coffee to me through my Ko-Fi page.
