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Resetting the Clock

There have long been problems in reconstructing the history of China, because several dynasties went to some lengths to erase the history of preceding dynasties. The classic case is the Qin (Chin) dynasty founded by Qin Shi Huang. You can tell this was remarkably successful because the resulting country is still called China. This took place in 221 B.C.E., by our calendars. This even caused the loss of many Confucian texts written in the centuries just prior to Qin. You would not easily guess there had been remarkable civilizations during the time of the Xia, Shang and Zhou dynasties, during the period between about 1400 B.C.E. and 800 B.C.E. You certainly would not guess the existence of several other advanced cultures which produced a great deal of material since found by archaeologists, but are not even hinted at in surviving texts. For western culture this would be like omitting evidence of Ahkenaten's Egypt, the Trojan War, Mycenaean Greece, plus important parts of the Hebrew bible.

Many western emperors and kings have contented themselves with merely restarting history with their birth or accession to the throne, without going to great lengths to destroy evidence of predecessors. This is a major problem for chronology, since the preceding king might not even have been aware, while alive, that he was already part of prehistory, based on the dates his successor would use.

We have a smaller version of this problem in the official history of ME/CFS/SEID. Real controversy seems to have begun with news reports of "yuppie flu" in the mid 1980s, and official actions taken in response. This is the unfortunate history which led to the current effort by the IOM to create a new label to replace Chronic Fatigue Syndrome (CFS) with Systemic Exertional Intolerance Disease (SEID). Literature searches using this label can be expected to reach back no further than 2015, drawing a veil over the history which required a serious effort at redefinition. A naive future researcher might never guess that the corresponding medical problem had been around for 30 years when the IOM committee redefined it, and might not realize that the institutions tasked with implementing and disseminating this definition were the same ones which produced three previous definitions now considered inadequate and positively harmful.

This still falls short of mentioning the existence of prior work on a clinical entity called myalgic encephalomyelitis (ME), epidemic neuromyasthenia (ENM), or "a disease resembling poliomyelitis", and of researchers who attempted to understand cluster outbreaks. Such reports go back to an outbreak at Los Angeles County Hospital in 1934, but I don't like to include this because of restrictions imposed by a legal settlement which distorted published accounts. Best guess at this point is that an attempt by experts from the Rockefeller Institute to use sera from patients who had recovered from poliomyelitis to immunize doctors and nurses at high risk of the disease backfired, and the Rockefeller Institute paid substantial compensation to protect its reputation. I do not believe careful researchers used an experimental vaccine, as has been alleged. Exactly what happened remains uncertain.

Remember that this took place before antibiotics existed in clinical practice, and before electron microscopes were used to image picoviruses like poliomyelitis virus. This was also before important discoveries in immunology, like Rh typing. Nobody knows what was in whatever was given to those medical personnel, let alone exactly what took place as a result. Due to legal restrictions we can't even be certain of where the money for compensating victims came from.

There is also a little matter of a dust-up called WWII in between reports in the 1939-45 period and those in the 1950s. All manner of records were neglected, destroyed or distorted during this period. This was also the period when some antibiotics became effective against such common chronic infectious diseases as TB, (though this was certainly not the end of the problem.)

For these reasons, I would generally limit reports of cluster outbreaks to the period after 1950, though I'm willing to consider some prior, if records are unusually good. The surprising thing is that you can recognize the disease currently being redefined in quite a number of published reports. Consider this capsule description by Parish in 1978:

(1) a systemic illness with relatively low fever or subnormal temperatures in delayed onset cases and tenderness over enlarged lymph glands,liver and/or spleen;
(2) marked fatigability;
(3) mental changes, such as impairment of memory and concentration, changes of mood with behaviour disorders in children, sleep disorders, irritability or depression;
(4) involvement of the autonomic nervous system resulting in orthostatic tachycardia, coldness of the extremities, episodes of sweating or profound pallor, sluggish pupillary responses, constipation and frequency of micturition, possibly as the result of a hypothalamic disturbance;
(5) diffuse and variable involvement of the nervous system leading to ataxia, weakness or sensory changes in a limb, nerve root or a peripheral nerve distribution, especially involving the ulnar nerve;
(6) muscle pain,tenderness and myasthenia;
(7) recurrences in about 20% of patients over a period of several years.

This isn't perfect, but it is a recognizable stab at the problem. This is by no means an isolated publication: Fog 1953, Hill 1955, Pellew 1955, Sumner 1956, Geffen 1957, Jackson 1957, Poskanzer 1957, Shelokov 1957, Blattner 1958, Gsell 1958, Acheson 1959, Henderson 1959, Daikos 1959, Albrecht 1964, Holt 1965, Adamson 1969, Hart 1969, Dillon 1974, Shelokov 1977, Ramsay 1978, Fegan 1983, Behan 1985, Salit 1985

What is more, many original investigators were still alive when that earlier reset took place, several tried to participate in the definition of the disease which came to be called CFS, and objected to the terminology. This should be considered the first 30-year reset of the clock for dealing with this disease. The current redefinition should then be considered the second 30-year reset.

Or was there an earlier reset?

Had there been an outbreak of a disease with the known characteristics prior to 1935 it would be very likely to be considered a psychiatric problem, if considered at all. This takes me back to a series of papers by Karl Menninger on psychiatric admissions to Boston area hospitals following the "Spanish Flu" epidemic of 1918-1920. These start in 1919 with:
Menninger, Karl A. "Psychoses Associated with Influenza. I. A Statistical Analysis." Jour. Am. Med. Assn., January 25 (1919).

See also: Menninger 1921, Menninger 1922, Menninger 1926, Menninger 1928

(This was not a one-man campaign, you can find other authors from the same period. Added: I have been reminded that polymyelitis was out of control during this period, and a serious public health problem. This means that patients with ME/CFS symptoms, but without psychotic manifestations, would be very likely to be diagnosed with post-polio syndrome, which might not even be mentioned in records. We have the problem here that, for the most part, all doctors could do was provide supportive care of poliomyelitis patients. This lack of effective treatment, and significant unreimbursed costs of consulting them, meant that most patients with clinical poliomyelitis, even with limited paralytic symptoms, may not have been examined by doctors during the acute disease.)

He is writing here primarily about recognized psychoses, which would include major depressive disorders and schizophrenia. The depression could easily be misidentified ME/CFS/SEID, the schizophrenia might have been diagnosed primarily on the basis of cognitive impairment, sometimes without hallucinations. What I want people to be surprised to see is that he was talking about major public health concerns with high costs for society as well as individuals, and he was saying it could be precipitated by flu-like illness, and might resolve to the level that the individual could resume previous life, without any treatment we would recognize as effective in these serious mental illnesses today. This is one aspect of prevention and treatment which has been shamefully neglected -- the possibility there is underlying physiological disease. We are generally not even screening schizophrenics for toxoplasmosis, a known parasitic disease with similar symptoms.

(Note: I have avoided most European references from that period because their accounts are often confounded by the terrible effects of WWI, which produced any number of cases of PTSD, and actual neurological, as opposed to metaphoric, "shellshock", as well as epidemics which raged through both military and civilian populations. Boston avoided direct effects of the war, and most patients described with the ensuing sequelae of "Spanish Flu" were never near combat.

If you are searching for European recognition of mental illness following influenza you should use different terminology like "Les Psychoses post-grippales" or "grippepsychosen". You can even go back to older German sources with such uncompromising titles as "Ueber den Einfluss fieberhafter Krankheiten auf Psychosen" or "den Einfluss des Wechselfiebers auf das Irresein". One thing apparent here is that flu-like illness could not only precipitate serious mental illness, it could also -- paradoxically -- produce temporary remission of symptoms, which strongly argues for immunological effects specific to viral infections.)

We now classify the main virus responsible for "Spanish Flu" as an H1N1 virus, though there are strong suspicions of cofactors in the original epidemic. There was an outbreak of H2N2 named the "Asian Flu" in 1956, though, to confuse matters, this overlapped another H1N1 epidemic. People now living remember this. Was there any follow up like Menninger's?

(As a personal note, this was the classic "worst flu of my life" for me, and I was sick enough to worry that I might live. There is a possible coincidence here because I was also in the area of the outbreak of the "Punta Gorda flu" of 1956, though my initial symptoms seemed no worse than a cold. Had this first virus been H2N2, I would not have had the terrible response when that hit the following year. It is also very unlikely that those patients who exhibited serious flu-like symptoms throughout 1956 had anything as ferociously contagious as "Asian Flu". For this reason I'm working on a "two-hit" hypothesis assuming an unknown cofactor. My father, who had survived the "Spanish flu" as an infant, was not seriously affected by the "Asian flu". My mother, born after that epidemic, was almost as badly affected as I was.)

Various descriptions of the resulting chronic diseases following flu-like acute disease seem about as consistent as changing medical terminology, technology and fashion could allow. For this reason, I do not place much credence in claims these problems were the result of new vaccinations introduced during the 20th century.

However, all this raises real questions about the length of time modern medicine has failed to come to grips with this problem. Has the medical evidence clock been reset one, two or three times?

Comments

Really interesting stuff, Anciendaze. I think all this controversy over names though draws the attention away from a bigger problem - is everyone trying to describe the same thing? I think the outbreaks are particularly interesting, because by their very nature they seem to preclude certain causes, such as EBV and Lyme, the two that probably have the most backing from ME physicians today. This means that either these physicians are wrong, or that we are talking about (at least) two diseases, one causing the outbreaks and the other the episodic cases. I think the latter is the most likely scenario, and if this is true it means that any attempt to come to a inclusive definition of the syndrome will only conceal the differences that exist in such a heterogenous group. I think the only solution at the present time would be to have a research definition and a clinical definition: this way the first would be able to recognize the uncertainties presented by the epidemiology, whilst the second would allow physicians to identify and treat patients with similar symptoms.

Oh, and the Xia are probably a good example of another tendency in medicine, namely that of making up a syndrome (or dynasty) to explain a bunch of symptoms (or collection of archeological artifacts). Just like with CFS, political motivations were an important factor in the creation the concept.
 
I think there is a reporting problem for sporadic cases. Estimates I trust say only about 1/3% of people in the general population who get flu-like illnesses fail to recover over a period of years. This means that doctors who are not looking for this will see each case as sui generis. Without pathognomonic clinical signs or biomarkers the only difference in cluster outbreaks is coincidence of this otherwise rare constellation of symptoms in time. The event we are probably not seeing is onset of a narrow immune impairment, quite possibly w.r.t. viral defenses, which takes place prior to any clinical symptoms.
 
I really like this one, anciendaze. I've thought the same thing myself, but never articulated it as clearly as you do here.
 

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