ME/CFS: Organic Disease or Psychosomatic Illness? A Re-Examination of the Royal Free Epidemic of 1955, Underhill & Baillod, 2020

John Mac

John Mac

Senior Member (Voting Rights)
Full title: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Organic Disease or Psychosomatic Illness? A Re-Examination of the Royal Free Epidemic of 1955

Abstract
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Background and Objectives:
Controversy exists over whether myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an organic disease or a psychosomatic illness.
ME/CFS usually occurs as sporadic cases, but epidemics (outbreaks) have occurred worldwide.
Myalgic encephalomyelitis was named to describe an outbreak affecting the lymphatic, muscular, and nervous systems that closed the Royal Free hospital for three months in 1955. Fifteen years later, two psychiatrists concluded that epidemic hysteria was the likely cause. ME/CFS research studies show multiple pathophysiological differences between patients and controls and a possible etiological role for infectious organisms, but the belief that ME/CFS is psychosomatic is widespread and has been specifically supported by the epidemic hysteria hypothesis for the Royal Free outbreak.
Our objective was to obtain accounts from ex-Royal Free hospital staff who personally experienced the 1955 outbreak and evaluate evidence for it being an infectious illness versus epidemic hysteria.

Materials and Methods:
Statements in the newsletters of two organizations for staff who had worked at the Royal Free hospital invited anyone who had experienced the 1955 Royal Free outbreak to contact the authors.
Accounts of the outbreak from telephone interviews and letters were evaluated against the “epidemic hysteria hypothesis” paper and original medical staff reports.

Results:
Twenty-seven ex-Royal Free hospital staff, including six who had developed ME, provided descriptions typical of an infectious illness affecting the lymphatic, muscular, and nervous systems, and were not consistent with epidemic hysteria.

Conclusions:
The 1955 Royal Free hospital epidemic of myalgic encephalomyelitis was an organic infectious disease, not psychogenic epidemic hysteria.
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https://pubmed.ncbi.nlm.nih.gov/33375343/


 
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mat said:
The real question is: Who was affected by the epidemic hysteria? The patients or the doctors? I guess the doctors were afraid of not having an easy explanation.
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Actually I think that's a really good point. I've not considered that aspect before.

In the pre social media era, where sick people are unlikely to feel well enough to go round detailing all their symptoms to other people, it is far more likely doctors discussing the epidemic will have more influence on each other's ideas than sick patients will have influence over the thoughts and behaviours of healthy people.
 
The time for recovery varied from a few days in those with the possible abortive disease to several weeks or months in others. Prolonged time to recovery also occurred in patients isolated at home. Some affected staff were only able to return to work part-time, and in several individuals, an unusual fatigue persisted for up to two to three years. Some patients appeared to recover but later relapsed. One patient committed suicide. Patients with persisting paralysis were transferred to a rehabilitation unit. A number of patients remained disabled and were unable to return to their previous occupations. We received a report of one patient in whom ME/CFS symptoms persisted long term.
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Useful study, glad to see this published. No evidence of hysteria here but it doesn't sound like it was ME/CFS either, unless I am missing something. It sounds like for most people it was a self-limiting postviral fatigue syndrome.
 
Kitty said:
I think @mat means which group was suffering from this so-called hysteria – was it the patients, or the doctors?
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Yes, I got that, but since we have doctors and nurses who got sick, their hospital patients who didn't get sick, the doctors who diagnosed and treated the sick doctors and nurses, and 15 years later, two psychiatrists who are also doctors, I was completely confused about which of the 3 varieties of doctors and 2 varieties of patients were being referred to! Maybe it's just me.
 
I doubt that recollections of an illness 65 years ago are much help in this case.

My reading of the literature suggests that this was a viral epidemic and I suspect McEverdy and Baird thought so too, but that in some cases some of the presenting features were clouded by suggestibility either on the part of the patient or the examining doctor. Maybe the apparently spurious signs were a reflection of over enthusiasm on the doctors part to find a strange new illness.

What I am pretty sure of is that there was no good evidence of some special sort of encephalomyelitis over and above a nasty dose of acute viral symptoms.
 
Hopefully the first of many revisiting all the past evidence that was missed or dismissed.

Ultimately the conclusion from M&B was nothing more than: women be hysterical. That it still "holds" today is amazing and not in a good way. The very idea of mass hysteria is frankly ludicrous, right there with demonic possession. You kinda have to laugh at the mention that many patients delayed seeking health care until the symptoms were severe. So consistent with hysteria... :rolleyes:

Really looking forward to something similar done for SARS. Many are still alive, it hasn't been that long.
 
I have this funny thought that some patients want to legitimitize their illness by constructing a founding myth of ME. This is done in response to lack of recognition and psychologization. The attempts to tell a story that doesn't quite fit reality can make it look like disbelief and psychologization are the right response to ME (even though the mass hysteria story is even worse in this regard).
 
Trish said:
Yes, I got that, but since we have doctors and nurses who got sick, their hospital patients who didn't get sick, the doctors who diagnosed and treated the sick doctors and nurses, and 15 years later, two psychiatrists who are also doctors, I was completely confused about which of the 3 varieties of doctors and 2 varieties of patients were being referred to! Maybe it's just me.
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Does it really matter if the groups overlap? If you are a doctor and a patient, you also look for explanations. At this time, the social dynamic was quite different. Doctors were not to be questioned. It was a question of etiquette. If you are a psychiatrist and a patient, how can you explain it to your own colleagues when they ask you what's going on? You feel that something is off and can't find any simple medical explanation, so what's the best excuse to not be considered stupid or psychiatrically ill? As a psychiatrist, you can not simply second-guess your physician's assessment. As a physician, you can not second guess the psychiatrist's opinion that he is just a little bit hysteric, and this must affect everyone. At the time, your own status depended a lot on eloquent representation. You had to deliver if you were asked. You either had to agree or not, and agreeing was a much more comfortable choice to sustain your own status and not be excluded by the remaining medical community. If you only agree and it should turn out wrong, there would be someone else to blame. This social pressure is the real internalized hysteria.

This is all speculative, of course. But such a social dynamic still affects modern science, regardless. It is the factor that delayed the consideration of the relativity theory. If there hadn't been the solar eclipse that allowed verification of Einstein's theory, the field of astrophysics would have never become so open minded as it is today. We can currently observe a similar paradigm shift in archeology when it comes to the acceptance of the Younger Driads theory. Science can not ignore evidence forever, it turns out. Eventually, the truth will be verified. The underlying attractors have been classified into expert and majority effect in this study (10.1371/journal.pone.0078433). Expert opinion without any previous dissent provides the greatest pressure on opinion, let the receivers themselves be experts or not.

Sid said:
Useful study, glad to see this published. No evidence of hysteria here but it doesn't sound like it was ME/CFS either, unless I am missing something. It sounds like for most people it was a self-limiting postviral fatigue syndrome.
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It doesn't really matter to the underlying "psychosomatism" phenomena. It can easily be adopted to CFS. Furthermore, social pressure might also have caused a bias. People had to fit into the typical image if they wanted to keep their status. This affected health issues, mental issues, and sexual orientation all the same.
 
My initial impression is that it is strange that the 1973 paper, and the apparent aanomalous eidence presented, was not referred. Not that it would help the case for hysteria, but for the sake of completeness.

I think it is also unhelpful that the RFH outbreak is almost never viewed in historical context.

It seems to be suggested that the RFH outbreak was the major influence in the naming of benign ME. This seems not entirely accurate.There are three papers which need consideration. Discussion of the issues seems to have started in the Lancet in 1954 in the edition including a report of the Middlesex outbreak. This was entitled
LEADING ARTICLES| VOLUME 264, ISSUE 6847, P1060-1061, NOVEMBER 2
Not Poliomyelitis

Sci-Hub | The Lancet, 264(6847), 1060–1061 | 10.1016/s0140-6736(54)90614-5 (sci-hub.se)

There was already interest in a number of abnormal cases and it was recognised that a new name was required. This was followed up in the Lancet in 1956 with an article presumed written by Acheson entitled A New Clinical Entity

(1956). The Lancet, 267(6926), 789–790. doi:10.1016/s0140-6736(56)91252-1
sci-hub.se/10.1016/s0140-6736(56)91252-1 (sci-hub.se)

This paper suggested the name benign myalgic encephalomyelitis but appeared to add the RFH to an already extant body of work

Acheson returned again to the matter in a letter to the Lancet in 1957 entitled Benign Myalgic Encephalomyelitis
The Lancet, 269(6973), 834–835. doi:10.1016/s0140-6736(57)90999-6
sci-hub.se/10.1016/S0140-6736(57)90999-6 (sci-hub.se)

in which he indicates that the suggested name had already been adopted to describe a number of cases in Coventry

Galpine, J. F., & Brady, C. (1957). BENIGN MYALGIC ENCEPHALOMYELITIS. The Lancet, 269(6972), 757–758. doi:10.1016/s0140-6736(57)91024-3
sci-hub.se/10.1016/S0140-6736(57)91024-3 (sci-hub.se)

Although we tend to think of the RFH as being the inspiration for the new name the contemporaneous documents suggest otherwise. McEvedy and Beard seem only to have been playing with the problem. If there were doubts about these cases it would have been entirely appropriate to enter into correspondence at the time. From some angles the M and B papers appear merely to be a fighting of the third battle of the Queen's Square Chair.
 
chrisb said:
My initial impression is that it is strange that the 1973 paper, and the apparent aanomalous eidence presented, was not referred. Not that it would help the case for hysteria, but for the sake of completeness.

I think it is also unhelpful that the RFH outbreak is almost never viewed in historical context.

It seems to be suggested that the RFH outbreak was the major influence in the naming of benign ME. This seems not entirely accurate.There are three papers which need consideration. Discussion of the issues seems to have started in the Lancet in 1954 in the edition including a report of the Middlesex outbreak. This was entitled
LEADING ARTICLES| VOLUME 264, ISSUE 6847, P1060-1061, NOVEMBER 2
Not Poliomyelitis

Sci-Hub | The Lancet, 264(6847), 1060–1061 | 10.1016/s0140-6736(54)90614-5 (sci-hub.se)

There was already interest in a number of abnormal cases and it was recognised that a new name was required. This was followed up in the Lancet in 1956 with an article presumed written by Acheson entitled A New Clinical Entity

(1956). The Lancet, 267(6926), 789–790. doi:10.1016/s0140-6736(56)91252-1
sci-hub.se/10.1016/s0140-6736(56)91252-1 (sci-hub.se)

This paper suggested the name benign myalgic encephalomyelitis but appeared to add the RFH to an already extant body of work

Acheson returned again to the matter in a letter to the Lancet in 1957 entitled Benign Myalgic Encephalomyelitis
The Lancet, 269(6973), 834–835. doi:10.1016/s0140-6736(57)90999-6
sci-hub.se/10.1016/S0140-6736(57)90999-6 (sci-hub.se)

in which he indicates that the suggested name had already been adopted to describe a number of cases in Coventry

Galpine, J. F., & Brady, C. (1957). BENIGN MYALGIC ENCEPHALOMYELITIS. The Lancet, 269(6972), 757–758. doi:10.1016/s0140-6736(57)91024-3
sci-hub.se/10.1016/S0140-6736(57)91024-3 (sci-hub.se)

Although we tend to think of the RFH as being the inspiration for the new name the contemporaneous documents suggest otherwise. McEvedy and Beard seem only to have been playing with the problem. If there were doubts about these cases it would have been entirely appropriate to enter into correspondence at the time. From some angles the M and B papers appear merely to be a fighting of the third battle of the Queen's Square Chair.
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If I can chip in here for a second I'm slightly surprised that there was so little interest (over the years) in the RFH story. Me and my colleague were aware of at least one other party researching the incident but very little archival material (more or less nothing) had been made easily publicly available despite it residing in archives etc. In fact we were told by one curator/archivist that we were viewing some records that she (the curator/archivist) had not handed over to anyone before; there just appeared to be a lack of curiosity.
 
Yes, it is astonishing. I find it hard to hold McEvedy responsible for what appears to have beena rather poor piece of research. The interesting questions are why Beard put his name to it, how it came to be published before anaysis of the collected data can have been properly taken place, and why it seems to have been accepted in establishment quarters without proper enquiry. It is, and looks to be, a piece of student work. Even if it were all correct it would still not provide sufficient evidence to come to conclusions about ME. That is why I think the details of the early Lancet papers important.

@AR68 I have found your research on the RFH fascinating and very helpful. It is interesting that David, Wessely and Pelosi knew not to base their arguments on McE and B, and instead cited Pilowsky's Abnormal Illness Behaviour. It is surprising that McE could have appeared so confident about hysteria five years after Slater's well known intervention on the subject. It all seems most naive.
 
strategist said:
I have this funny thought that some patients want to legitimitize their illness by constructing a founding myth of ME. This is done in response to lack of recognition and psychologization. The attempts to tell a story that doesn't quite fit reality can make it look like disbelief and psychologization are the right response to ME (even though the mass hysteria story is even worse in this regard).
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Infections and epidemics were commonplace in those years and long term sequelae were too. When I took measles in about 1962 I was kept in a darkened room wearing eyeshades my father made to prevent eye problems. One of my friends was deaf in one ear due to measles and, of course, polio was a constant threat.

There is no need for a founding myth of ME. It was a disease that happened after epidemics just the way we see happening with long covid.

The doctors from the Royal Free supported their patients and laid the foundations for everything we know about ME. Without them we would be completely at the mercy of the BPSers.

The fact that no virus was identified is not proof of anything as even one of the polio strains finally included in the vaccine was not discovered till later. Viral identification was in its infancy.

Once the use of polio vaccine and others became widespread and with more and more antibiotics being discovered microbiology was edged out of importance until the rise of the superbugs when people felt that infections only happened if it was someone's fault instead of the natural state of the world.

As Chrisb has pointed out, psychology became more and more prominent so that hysteria became the default position for anything unknown.

In the early 80s ME once again began to be treated as a proper disease, not some sort of strange entity, but simply something biological gone wrong like MS or Parkinson's but the CDC or rather Strauss got hold of it then Wessely and they used it to build an empire by muddling everything up.

When people were ill in the Royal Free and all the other places the doctors examining them knew it was not hysteria or psychological. It was only so called researchers looking at records and looking back down the years that could make the claim.
 
AR68 said:
If I can chip in here for a second I'm slightly surprised that there was so little interest (over the years) in the RFH story. Me and my colleague were aware of at least one other party researching the incident but very little archival material (more or less nothing) had been made easily publicly available despite it residing in archives etc. In fact we were told by one curator/archivist that we were viewing some records that she (the curator/archivist) had not handed over to anyone before; there just appeared to be a lack of curiosity.
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I'm really hopeful your work will be invaluable to other researchers willing to expand on it. The timing could not have been more fortuitous. Sometimes the universe just aligns in weird ways.
 
rvallee said:
I'm really hopeful your work will be invaluable to other researchers willing to expand on it. The timing could not have been more fortuitous. Sometimes the universe just aligns in weird ways.
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Thank you. The timing has everything to do with it and maybe we'll talk about that more later but, very bluntly, as soon as I saw the phrase 'long covid' I had to do something with what we had.
 
mat said:
This is all speculative, of course. But such a social dynamic still affects modern science, regardless. It is the factor that delayed the consideration of the relativity theory. If there hadn't been the solar eclipse that allowed verification of Einstein's theory, the field of astrophysics would have never become so open minded as it is today.
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Not quite. The 1919 Eddington experiment was widely hailed in the press, immediately afterwards, as spectacular proof of the radical, new theory but it didn't actually prove anything. The observational accuracy just wasn't good enough and there were theoretical alternatives. But the supporters of General Relativity were so wrapped up in the beauty of the idea that they took it as proof regardless. It wasn't until the 1960s, the WP article reports, that the matter was really settled. By that time General Relativity had long been generally accepted, if not actually understood. Social dynamics, rather like physical dynamics, can be a complicated, old thing. In that case, popular opinion ran ahead of the science and it might have been entirely incorrect. Might be a lesson in there somewhere, but it's probably complicated...
 
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