How old is ME/CFS and what are the implications for theories of mechanism?

[Sasha]

From the 'Brain Cells' thread:

ME/CFS is most likely as old as humankind.

I think our ME/CFS is less than 100 years old.

I don't know that we've really discussed in any depth how old ME/CFS is, and any theory of ME/CFS would need to account for the recent emergence of ME/CFS - if it has indeed recently emerged.

Is there anything about the kind of hot new theories being discussed lately on the forum that could accommodate ME/CFS being a recentish phenomenom, if it is?

How could we even establish how old it is, given even the current difficulties in diagnosing it?

Any reason to think that it's old? Any reason to think that it's new? Would either rule a theory in or out?

 

[Trish]

We have no reason to think it's new. If we go back a few centuries, so many chronic disabling conditions like Parkinson's disease, RA, MS, were not understood, and were probably all lumped together into general feebleness and invalids, and were either cared for by family and community, or became destitute and died.

 

[Sasha]

We have no reason to think it's new. If we go back a few centuries, so many chronic disabling conditions like Parkinson's disease, RA, MS, were not understood, and were probably all lumped together into general feebleness and invalids, and were either cared for by family and community, or became destitute and died.

Could well be, but I wonder if there's a well-established discipline of looking back in time for prevalence of these things and if so, how it does that research and what it has come up with for these diseases, let alone for ME/CFS. The environment changes over time, and we've had a lot of environmental changes in modern times - which could be a factor in new diseases emerging.

 

[Jonathan Edwards]

Could well be, but I wonder if there's a well-established discipline of looking back in time for prevalence of these things and if so, how it does that research and what it has come up with for these diseases, let alone for ME/CFS

There is nothing very reliable unless you h ave objective findings and we don't. The one thing that might be worth finding out would be rate of infection with EBV. EBV DNA presists in all of us but mostly in B cells. It might be findable in bone marrow from bones 500 years old I suppose. But there might be big uncertinty factors about rates of preservation.

It is quite possible that someone has looked for EBV DNA in historical specimens.

Otherwise i don't think we have anything to go on and no reason to think ME/CFS is new.

 

[Kalliope]

Thank you for this interesting thread!

Researcher and MD Kristine Lillestøl tried to look a bit into this, but I'm unsure what her concept of ME was to begin with.

Here's an (old) article in English on her research from Science Norway:
Chronic fatigue syndrome across time?

Here's a paper by her and Hilde Bondevik from 2013 published in the Journal of the Norwegian Medical Association:
Neurasthenia in Norway 1880-1920

Abstract:

Neurasthenia was introduced as a diagnostic category in America in 1869, and rapidly spread to Europe.

Many have drawn parallels between the historical disease entity of neurasthenia and contemporary conditions such as chronic fatigue syndrome/myalgic encephalopathy and burn-out, but we have little knowledge about the early history of neurasthenia in Norway.

On the basis of Norwegian medical journals from the period 1880-1920, we have sought to study the introduction, understanding and application of the concept of neurasthenia in Norwegian medical practice, with particular emphasis on symptoms, causes, treatment, prognosis and prevalence. Results show that the term was probably used in a Norwegian medical journal for the first time in 1876, and during the 1880s there followed an increasing number of reports of people who had been diagnosed with neurasthenia.

The condition was defined as a weakness of the nervous system. The symptom picture was extensive, with exhaustion as the main symptom. The causes of the symptoms could not be objectively verified or located, and theories abounded. Overexertion was a common explanation, although traumas, infections, malnutrition, heredity and sexual excesses were also assumed to be causes. The recommended treatment focused on strengthening the nervous system, for example through rest and electrotherapy.

The condition was described as typical of its time, as a response to the «Zeitgeist» and modern life.

 

[Jonathan Edwards]

Apparently EBV has been in human saliva for 5700 years at least.

 

[Chandelier]

The Swiss ME/CFS society has several articles about the history of ME/CFS, available in German and French.
For an English translation use Google Translate.

• Overview
• The Ancient World
• The Medieval Period
• The 17th and 18th Century
• The 19th Century
• Fin du Siecle – Important Phenomena
• Fin du Siecle - Sigmund Freud
• Fin du Siecle #2
• 1910-1950 – Massphenomena
• 1950–2000: ME and CFS are being defined
• 2000+ Fusion ME/CFS
• The Present Day

 

[duncan]

This gets complicated very quickly - or at least it does for me. And I must confess up front that I really don't have a horse in this race. It's just me opining. Regardless, too many question marks confront us for any solidly accurate response.

Definitions are important and I'm not sure things like neurasthenia meets our definition of ME/CFS (is there anything comparable to PEM in history. for instance?)

Causes are important, and again we are on unsteady legs. If there are recent/new causes of ME/CFS, does that change our brand of ME/CFS? Maybe, maybe not.

Medical ignorance plays a role: Historically speaking, far too many conditions approximate ME/CFS that go back more than a 100 years medics would not have been able to diagnose appropriately. (sorry for the awkward wording)

Even if ME/CFS extends back thousands of years, those editions of ME/CFS are unlikely IMO to be identical to ours - too many outside factors might have levied influence on the nature of the disease.

But, eh, who knows?

 

[Nightsong]

Neurasthenia would have been the most significant antecedent diagnosis. Some would have been lumped under the diagnosis of "nervousness" (which originally didn't have quite the same connotation as it does today, being thought of as a literal disorder of nerves) or one of its many synonyms like "nervous erethism". Some more severe patients might have been written off as having consumption, or chlorosis. Post-Freud things changed and many would have been considered to suffer from "psychoneurosis".

If one looks at some famous neurasthenics - Florence Nightingale is disputable but may well have been a case of ME/CFS. Virginia Woolf would probably be categorised as having a primary psychiatric illness these days. Alice James would probably have attracted a diagnosis of FND.

Others might have acquired diagnoses of effort syndrome / Da Costa's syndrome (the direct antecedent of POTS). These were popular diagnoses, until they weren't. One turning point was when Paul Wood came along and largely debunked the concept in three Goulstonian Lectures to the RCP (written up in a three-part series in the BMJ in 1941, casting it all into the realm of psychosomatics until Schondorf and Low resurrected it in the early 1990s).

Although some cases of neurasthenia were probably those of various thyroid or adrenal or autoimmune or metabolic disorders that would be correctly diagnosed today, and some were undoubtedly burnout or depression or FND or other psychiatric conditions, I think it's likely that at least a substantial minority of "neurasthenic" cases were genuinely cases of ME/CFS.

There is a chapter on neurasthenia in Clifford Allbutt's System of Medicine (originally published in 1896). He describes a house-call:

It has happened to me on more than one occasion to be called to the fortress of one of these neurasthenics, for whose unattainable peace a hushed family circle had boarded up the windows, stretched cords across the thickly carpeted passages, awed the children into dreadful silence, tied up the door bell, and banished dog and fowl from the parish. The doctor is implored by the vigilant wife or daughter to enter the room, if enter he must, with velvet foot and to speak with the still voice that guides were wont to use under the se/racs of the Ge/ant. In his turn the patient beckons you to his lips, and confides his tale to you in a feeble and broken whisper. . . [b]oarding up the windows, no unusual freak of these patients, is not done for the ear only; they often shrink as much from light (photophobia) as from sound.

That sounds very much like a visit to someone with the sensory sensivities of very severe ME. Oh, and the neurasthenia literature is replete with curious commonalities like this:

drunkenness is not very common among neurasthenics: in most of them alcohol, even in small doses, produces flushing and other deterrent discomforts.

 

[Trish]

We need only go back a couple of hundred years to see how confused medical diagnosis was when people had multiple symptoms of unknown origin. Take Charles Darwin for example.
https://en.wikipedia.org/wiki/Health_of_Charles_Darwin
Florence Nightingale is another well known example
https://me-pedia.org/wiki/Florence_Nightingale

 

[rvallee]

Could well be, but I wonder if there's a well-established discipline of looking back in time for prevalence of these things

There is a history of medicine discipline. Maybe a sub-discipline, not sure.

Some people claiming such expertise include Edward Shorter (or something like that) and Henrik Vogt, who are famously hostile to the existence of ME/CFS. So I don't know about the quality of this discipline. It's not as if there is a good counterpart to these folks, certainly nothing that has been published on the forum outside of a few articles, nothing in-depth for sure. It's a very unpopular topic so not much to do here.

Maybe it's one of those "let's learn from history so as to repeat it exactly" kind of thing. More of the "written by the victors so that they keep 'winning'" kind.

 

[rvallee]

On the basis of Norwegian medical journals from the period 1880-1920

The condition was described as typical of its time, as a response to the «Zeitgeist» and modern life.

This might be the most ridiculous part of this. How this nonsense is still around. Despite everything, modern life is easier than it's ever been. Which, uh, says a lot. But they used to say the exact same things about urban life that would qualify as living museum today, a pace of life so slow it's almost at a stand-still.

One of the most important aspects of intelligence is flexibility, being able to deal with changes in circumstances and adapt. The whole nexus of psychology and medicine is entirely incapable of it, is basically unchanged since the late 19th century. Hence why it delivers exactly nothing while the rest of the world moves faster than ever. It's like a time capsule, a monument to the arrogance and hubris of humanity.