Scotland Herald: 'Chronic fatigue, 'mass hysteria', and Dr Melvin Ramsay', by Helen McArdle, 2024

I'm a bit confused by the debate around medical hysteria? I thought that hysteria implied an "in the moment" panic, loss of reason and crazy behaviour like screaming etc?

I've not studied the detail so please fill me in but surely that would be different from Dr's getting confused, being influenced by prevailing thought over something novel they weren't sure about and misapplying a then diagnostic label as a consequence?

Are you saying there weren't any neurological symptoms in that ME outbreak and it should not have been classed by WHO in the 60s as neurological? What should they have done?

Tbh I don't really feel the term hysteria is helpful given the background context even among ourselves.

Glad to report someone else, a Julie Houston , saw the news article and replied to counter robustly.

"While agreeing that mental illness is real and can be extremely debilitating, Myalgic Encephalomyelitis is not a mental illness nor is it a psychological condition. It is a serious, complex, multisystem disease affecting many bodily systems such as the nervous, immune, and endocrine systems. The jury is not still out on this; it is an organic illness, backed up by research. There is no need for an open mind; this matter is settled: it is a physical illness.
Maeve did not have depression or another mental illness, and this was borne out from the testimony of medical practitioners and other witnesses throughout the inquest. There were other tube feeding methods that could have been attempted, but none were seriously considered until it was too late. She was so badly let down by systemic failures, of both medical and social care, that she paid for with her life ".
 
Kiristar said:
I'm a bit confused by the debate around medical hysteria? I thought that hysteria implied an "in the moment" panic, loss of reason and crazy behaviour like screaming etc?

Are you saying there weren't any neurological symptoms in that ME outbreak and it should not have been classed by WHO in the 60s as neurological? What should they have done?

Tbh I don't really feel the term hysteria is helpful given the background context even among ourselves.
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The popular term hysteria does not have much to do with the medical term, which in recent terms equates to 'conversion disorder' or 'psychosomatic'. But 'mass hysteria' is something different again. It is the spreading of a meme of false belief, whether at a far right lynching rally or a belief that everyone has polio.

McEvedy and Beard were suggesting that there was a meme of belief by the patients that they had a serious neurological illness that didn't exist. What they miss is that this meme originates from the doctors doing the examinations, not from the patients, although the patients, being health care professionals could get involved in it too.

The patients may well have had neurological symptoms. We all have odd neurological symptoms all the time and especially when sick with a virus. A hand goes numb or legs feel weak. It is very likely that the RFH patients had nothing more than the usual transient neurological symptoms that ill people often have. But because everyone was hyped up these got recorded as if partial paralysis or anaesthesia.

Maybe an important point is that WHO should not have classified ME (as we now understand it as EM/CFS) as neurological because we don't know what it is. And, for sure, ME/CFS should not be classified on the basis of an acute illness seventy years ago that might or might not have had neurological features and which has nothing to do with the concept of ME/CFS other than as one of many possible triggers and one that as far as we know is long gone.

The WHO classification is constantly brought up but it is a complete red herring and I think very likely to mislead people. It is based on complete confusion. ME/CFS probably is a neurological-immune process but the reasons for the classification were almost certainly spurious.
 
I'm sure you're right but that's a very fine distinction one that many won't necessarily grasp when something medical and already subject to misinterpretation is the subject matter.

So the term still makes me exceedingly uncomfortable when used in the context of ME.

Linguistically in the common usage you refer to its also rather dramatic in connotation, surely there are alternatives that might be less ambiguous problematic or confusing we could use? But just my own feelings of course.
 
Kiristar said:
Tbh I don't really feel the term hysteria is helpful given the background context even among ourselves.
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I think it's important to call a spade a spade. If we call it a functional digging implement, people will be confused, and think it might be a term that they can accept and even be proud of. 'Functional disorder' and even 'conversion disorder' leave room for a lot of ambiguity for the patient, but I believe many medical professionals will hear those terms and think 'created by the mind' and 'hysteria'. I don't think we should shy away from acknowledging that psychosomatic proponents are diagnosing people with ME/CFS symptoms with hysteria.

Kiristar quoting a comment said:
"While agreeing that mental illness is real and can be extremely debilitating, Myalgic Encephalomyelitis is not a mental illness nor is it a psychological condition. It is a serious, complex, multisystem disease affecting many bodily systems such as the nervous, immune, and endocrine systems. The jury is not still out on this; it is an organic illness, backed up by research. There is no need for an open mind; this matter is settled: it is a physical illness.
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@Kiristar, if a psychosomatic proponent asked you 'so what is this research that proves that ME/CFS is a 'physical illness'?, what would you say?

I'm a lot more worried about the use of 'complex', as in 'ME/CFS is a serious, complex multisystem disease' than I am about 'hysteria'.
 
@Hutan
Re hysteria - I just was referring specifically to the confusing comment saying there was mass hysteria by the Dr's treating the immediate Royal Free outbreak (which medically speaking there wasnt).
- I didn't mean we should necessarily avoid calling out that some of these euphemisms being used by the BPS lobby actually mean the old (true medical) hysteria term so are inappropriate for what is a physical disease . Apologies for any confusion if I articulated myself poorly.

That said It would be nice to get to a point where referring back to McEvedy isn't necessary and the narrative is focused much more on the growing physical evidence :)

Re describing the physical illness. I didn't write that comment - I was just sharing what the person who commented wrote.

I agree - I'm not a big fan of the "complex multisystem" language either. It's a bit too vague and indeterminate.

When I am asked I tend to say it's "a neuro-immune disease with multisystem symptoms.":emoji_shrug:Very open to better suggestions I can use:emoji_relaxed:
 
Kiristar said:
That said It would be nice to get to a point where referring back to McEvedy isn't necessary and the narrative is focused much more on the growing physical evidence
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I agree in a way, but was trying to make the point that referring to McE was never necessary or even relevant. It stirs up the physical/psychological antagonism. We want to focus on evidence and it doesn't matter whether it is physical or psychological (whatever one might intend that to mean) evidence, just that it is reliable.
 
Jonathan Edwards said:
Yes, it is (c) the people were sick, and it was 'mass medical hysteria' in the sense that the doctors told them it was neurological when it wasn't, in other words, mass misdiagnosis, but being suggestible and, at that point in history, reasonably terrified of 'atypical polio' the patients may have colluded unconsciously in the eliciting of meaningless neurological signs.

And I did say Mass Medical Hysteria, by which, to clarify, I meant the spread of a belief by and amongst doctors. Any influence of beliefs on patients' reporting of symptoms would be by-products, but might contribute significantly to the end result. Although they were not imagining they were sick they would almost certainly have been imagining that they had a terrible neurological disease.

I think people have misunderstood just how complicated the psychological situation would have been and of course E and B completely failed to appreciate the complexity.

Long Covid is quite different. It has been doubted whether people are ill at all. I think it would be quite difficult for doctors to persuade well people that they feel ill. On the other hand if people are feeling very ill from an acute viral infection I suspect it would be quite easy for doctors to persuade them that they had a previously unknown variant of polio causing neurological damage.

The problem remains relevant in that vast numbers of people now believe they have Ehlers-Danlos syndrome when they don't, because of the beliefs of a tiny number of physicians who have dreamt up a story without any evidence. And I think this is of direct relevance to the feeding problems in sever ME/CFS. The gastroenterologists have been surprised to note a rapid increase in 'functional GI problems' in people with 'EDS' and as a pushback have openly called for a stop to feeding such people. It even gets a mention in the RCP advice on feeding difficulties and may be at the heart of recent refusals to feed those who need to be fed.
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You are of course correct that EDS is a troubled category.

There are as everywhere in healthcare and research some complicated motivations for funding and treatment and diagnosis.

But if if anything it’s too hard to get a diagnosis, for either the confirmed genetic variations or the sister syndrome which may occur with hyper mobility (I know as per past posts that you don’t think it does and there is no relationship at all. I disagree and think that this is every bit as valid a category as CFS which you like). Of course there are misdiagnosis probably lots but that’s the same with many a thing in CI search for answers.

But back on topic I think it’s a stigmatising form of speculation to suggest that patients, long gone, manifested neurological symptoms when whatever virus didn’t produce them. That is like Covid (and long Covid) which has produced neurological and psychiatric symptoms in some people but not others. Any virus could do that. Maybe doctors viewed symptoms as neurological when they weren’t, but maybe they were.


Either way saying docs may have misinterpreted what they saw, is different than saying patients may not have experienced the symptoms that they manifested as result of the infection but their thoughts and fears. The implications here the costs to patients who are no longer here to tell us what happened are higher. Not least because many of them didn’t recover.
 
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Ash said:
Either way saying docs may have misinterpreted what they saw, is different than saying patients may not have experienced the symptoms that they manifested as result of the infection but their thoughts and fears.
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I didn't for a minute suggestion that the patients didn't experience symptoms. I suggested that they might well have had other origins. Viruses do not in general produce signs of focal neurological deficits. Very specific viruses do. In Covid the neurological deficits have probably mostly been strokes secondary to hypoxia and organ failure.

McEvedy's case was that the neurological signs documented did not fit with focal neurological lesions from a virus. I have read the paper and I agree. It is vanishingly unlikely that they were due to encephalomyelitis (if anything they might have had to be due to peripheral mononeuropathies and even that doesn't fit). The tricky question is why these apparent neurological deficits were recorded in the notes. McEvedy assumed that they were due to patient suggestibility giving rise to patterns of symptoms that they thought would be due to a polio-like virus.

We know that that sort of thing happens. People do report these spurious patterns of symptoms. But I think the truth is likely to be a bit different. I think the spuriousness of the signs may have had as much to do with rather amateur neurological examination by doctors with misconceptions about what they were looking at. If the physicians had been expert neurologists they would have noted in the notes that the symptom patterns did NOT fit with an encephalomyelitis. Ramsey himself was not a neurologist. Although all physicians get to learn how to do a neurological examination not that many are actually very proficient at interpreting it.

So I am not in any way trying to suggest that these patients at RFH were reporting symptoms they did not have. It s irrelevant to ME/CFS anyway since this wa not ME/CFS but an acute illness that in some cases was followed by ME/CFS. But I think it is important to take on board that inappropriate satires about 'ME' are still very widespread, including the confusion between Royal Free Disease and ME/CFS, which are two quite separate concepts.
 
I am putting this in this thread because it seems to be the most recent discussion of the relevant points.

I was digging out references for a paper I am writing and looked back at Ramsay 1957. I was interested to find the paper attached below. Ramsay himself suggests that individual patients had features of hysteria (rather than mass hysteria). He also suggest, to my further surprise, that some of their symptoms appeared to be 'functional'. I don't think it alters the important aspects of the story but it does make things a bit more complicated.
 

Attachments

Not a surprise. Ramsay said something similar about functional overlay in 1967, in his book Infectious Diseases (p150) and in 1988, in Myalgic Encephalomyelitis and Postviral Fatigue States (p36 2nd ed).

ETA: You might also be interested to know that Acheson discussed the discrete infectious illness -> PVFS+ transition of meaning in 1991, in the introduction to a British Medical Bulletin (47:4, October 1991).
 
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Nightsong said:
ETA: You might also be interested to know that Acheson discussed the discrete infectious illness -> PVFS+ transition of meaning in 1991, in the introduction to a British Medical Bulletin (47:4, October 1991).
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Many thanks for that. It shows just how much clearer the confusion was at the time and why it is time we caught up with the lesson that Acheson had already learnt thirty years ago.

The irony is that they plumped for PVFS, which of course isn't any good either. It is interesting to see Acheson saying that nearly everyone recovers and that graded exercise is good.
 
Jonathan Edwards said:
I am putting this in this thread because it seems to be the most recent discussion of the relevant points.

I was digging out references for a paper I am writing and looked back at Ramsay 1957. I was interested to find the paper attached below. Ramsay himself suggests that individual patients had features of hysteria (rather than mass hysteria). He also suggest, to my further surprise, that some of their symptoms appeared to be 'functional'. I don't think it alters the important aspects of the story but it does make things a bit more complicated.
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That is interesting reading. Ramsay is very clear though that there is an actual disease though. He talks of emotional lability with some patients having hysterical weeping (by which I think he means uncontrollable weeping out of proportion to any cause), but he is not supporting the idea that these people have 'hysteria' as we would interpret that term today.

He says "It is quite understandable that a neurologist seeing these patients with their bizarre jumble of neurological signs and emotional disturbance is likely to diagnose hysteria. Indeed the hysterical nature of certain features of the clinical manifestation is obvious. Nevertheless it constitutes a grave injustice to diagnose hysteria in these case without recognising that the condition is organically determined."

He says a number of times that the disease the people have is easily misdiagnosed as polio in its early stages and as functional in its later stages, but he is clear that these labels are misdiagnoses.
 
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Hutan said:
Ramsay is very clear though that there is an actual disease though.
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He is, but was he thinking clearly?
I will immediately reiterate that this is irrelevant to ME/CFS because it is about a quite different illness that seems to have triggered some ME/CFS cases later.

I suspect Ramsay never did a formal neurology attachment. He would have trained in the day when junior medical training was almost entirely ad hoc (1920s). Even when I did registrar training in the 1970s it was pot luck whether you did neurology. I did, and was sobered by realising how incompetent I had been before.

Neurologists would say that for patients then labelled as hysteria that there is very much actual disease. What does actual disease mean here? Hysteria is not malingering, or even hypochondria. Ramsay is talking of what is now called FND. We probably have no idea what it is, but it is actual disease.

But Ramsay seems muddled. He says 'the hysterical nature of certain features of the clinical manifestation is obvious'. What does he mean by that? And then he says 'Nevertheless it constitutes a grave injustice to diagnose hysteria in these case without recognising that the condition is organically determined.' But a neurologist is likely to assume that FND is organically determined.

What is Ramsay claiming? I think he wants to claim the symptoms are due to an infectious disease he thinks he has identified. But the signs and symptoms he describes don't fit well with known infectious disease (why he thinks they are novel.) He wants to claim that his neurological assessment, or that of his team, has picked out valid central nervous system signs. The trouble is, that the medical profession now looking back, especially if they have seen the data from McE and B, think that Ramsay's neurological assessment may have been amateur. It is very easy to elicit 'neurological signs' that do not mean what they basic books says they mean because there are a whole lot of ways they come out wrong if your technique is untrained.

Ramsay himself admits that a neurologist would be unconvinced by the patterns of signs. There are things that don't make sense. The brisk reflexes were supposed to indicate upper motor neurone involvement but there was no spasticity and the weakness that was supposed to be due to upper motor neurone change moved around day by day. Upper motor neurone lesions don't do that. The increased reflexes take time to develop (there may be flaccidity at first) and signify a process that evolves over days or weeks.

It isn't that McE and B misled people. The physician community came to realise that Ramsay's claims of focal neurological signs were probably unreliable. We have all seen signs like that. You call in an expert neurologist from Queen Square and they demonstrate that with skilled examination the signs are not there.

Ramsay should be applauded for having identified some of the features of ME/CFS later on in some cases. His reports of neurotropic viral illness at the Royal Free and another at a nearby cottage hospital are probably best consigned to the history of modern medicine growing up. They have nothing to do with ME/CFS.
 
Jonathan Edwards said:
What does actual disease mean here? Hysteria is not malingering, or even hypochondria. Ramsay is talking of what is now called FND. We probably have no idea what it is, but it is actual disease.
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Very interesting on Ramsay. Until you started talking about him recently, I had no idea about any of these issues with his observations at the Royal Free.

But I'm wondering how many doctors (or possibly, which specialities) would agree with your interpretation of FND. I thought that we'd been seeing it used as a dog-whistle term in psychiatry for 'your symptoms feel real to you, and are maybe even measurable, but it's your wrong thinking that's producing them'.
 
Jonathan Edwards said:
Yes, well, wrong thinking is actual disease surely. Schizophrenia is actual disease.
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But surely if you have schizophrenia, you can't help thinking wrong. The accusation (and it feels like one) levelled at PwME is that we have false beliefs and could think right if our errors were pointed out to us. People who deny human-made climate change in the face of all the evidence aren't considered to have a disease - simply wrong beliefs.
 
Sasha said:
But surely if you have schizophrenia, you can't help thinking wrong. The accusation (and it feels like one) levelled at PwME is that we have false beliefs and could think right if our errors were pointed out to us.
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Absolutely. This is one of the first things you learn as a medical student posted to psychiatry. In 'psychosis' (schizophrenia, paranoia, biologic depression) the patient cannot think rationally and so there is no point in trying to reason them out of their illness. In 'neurosis' (anxiety, reactive depression) the patient is still rational and there is a point. 'Psychosomatic' illness does not fit in to this but if anything it must be irrational for beliefs you do not even know you hold to make you feel you have to lie in bed with the curtains closed. So CBT cannot be expected to work in psychosomatic illness. And it doesn't work for ME/CFS. But that does not prove it is psychosomatic, just that it was barmy to try CBT even on a psychological basis. The added problem of course (from which this stems) is that being psychotherapist is itself an irrational state - believing you can make people better without any reliable evidence. Or at least it becomes irrational when the lack of evidence is pointed out and you refuse to acknowledge it.
 
Jonathan Edwards said:
I will immediately reiterate that this is irrelevant to ME/CFS because it is about a quite different illness that seems to have triggered some ME/CFS cases later.
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It seems as though the majority, or at least a substantial number of the cases he was reporting on there did have long term sequelae. The followup often covers 1 to 2 years after the acute illness. The initiating illness seemed to be mostly an infection with headache, limb pain, varying levels of fever and often neck stiffness. Perhaps if you were there, there really did seem to be a recognisably discrete new acute illness. But, the report does seem a bit of an odd collection of cases.

Ramsay seems very excited about the myograms, supposedly showing a distinct pattern. Does that seem likely? Perhaps those led him astray a bit?

Yes, a lot of the persisting cases don't really sound like ME/CFS. Some do though. There is one 15 year old who for six months after her return to school had to go to bed at 5 pm each day and couldn't attempt her homework, but who came right over the next six months. And Case 5 had fatigue, weakness, and headaches 6 months after the initiating infection, and had given up on his studies and other jobs.

I'm not really sure what you are saying Jonathan. Certainly some of the people had emotional lability, or at least that is what was recorded. In some cases, the patients were perhaps just really fed up with their situation and the doctors. Pretty much all of us here have been appalled at the errors that we have seen in medical notes. I'd be surprised if some of Ramsay's observations were not a bit off the mark.

I don't think we can say, on the basis of these reports whether people had a psychosomatic disease or not. Certainly there are some hints that some people did not. If you want to call a health condition 'functional' because there is no other established medical diagnosis that is obvious with the information to hand, I guess you can, but the label does bring with it a lot of baggage. Or are you suggesting that these people definitely had psychosomatic illnesses? Ramsay doesn't seem to be suggesting that here, quite the opposite.

I really think it is best if the term 'functional' is not used, as it is impossible to know what the person using it means.
 
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