Were historic 'ME' outbreaks really ME?

[alex3619]

"patient experiences physical symptoms that have a psychological, rather than an organic, cause"

I do not think there is any doubt that people can get anxious in problematic situations, and focus on possible problems so they become magnified in their perception. The issue to me is that in many of the diseases there is physical evidence, usually in biochemistry, but that this is ignored. The way its often treated in these cases seems to be that psychiatric theory trumps individual patient biochemistry.

 

[adambeyoncelowe]

I don't remember McE and B referring to EEG (unfortunately I did not download the paper so would have to go back through my college access). They mention EMG and point out that the putative odd findings were not abnormal. I think they are right on that.

Ramsay notes both were used and that both showed positive results. It's possible these results were really normal, too, but I'm not convinced they wouldn't ignore them if they were inconvenient, either.

 

[adambeyoncelowe]

Did McE & B mention the metabolic tests too? Things like creatinine phosphokinase,
lactic dehydrogenase, glutamic oxalo-acetic transaminase, glutamic pyruvate transaminase and y-glutamyl transpeptidase were also tested.

Compston et al. (1970) responded to them by saying that although they considered a diagnosis of hysteria, the occurrence of low grade fever in 89%, of lymphadenopathy in 79%, of ocular palsies in 43% and of facial palsy in 19% of patients 'rendered it untenable'.

If we ignore the last two (we've already discussed the neuro signs), what do McE & B make of apparently immunological symptoms like the first two? Ramsay adds orthostatic tachycardia to the list of symptoms against hysteria, as well, but I'm not sure if they assessed that as a neuro symptom or not.

I need to track the paper down for myself, I think. I'll have a google now!

 

[Jonathan Edwards]

what do McE & B make of apparently immunological symptoms like the first two?

I suspect McE and B did not think these were worth commenting on because they would simply suggest that the subjects had a viral illness, as hospital workers are likely to several times a year. I think they were suggesting that the evidence for an encephalomyelitis may have been explained by suggestibility. Presumably those who were in the middle of a viral illness and feeling unwell from that would be the most likely to come to think they had something worse. I never read it that McE and B thought there was nothing wrong with the subjects but just that they had caught some ordinary epidemic virus and that the apparent neurological features were not in fact due to nerve pathology. Ramsay and the other proponents of the ME idea clearly argued as if McE and B were saying there was nothing wrong with the subjects at all but that seems to me a red herring.

And in fact most young adults have some tender palpable lymph modes if you feel hard enough. It was never a very reliable sign of anything.

 

[adambeyoncelowe]

I suspect McE and B did not think these were worth commenting on because they would simply suggest that the subjects had a viral illness, as hospital workers are likely to several times a year. I think they were suggesting that the evidence for an encephalomyelitis may have been explained by suggestibility. Presumably those who were in the middle of a viral illness and feeling unwell from that would be the most likely to come to think they had something worse. I never read it that McE and B thought there was nothing wrong with the subjects but just that they had caught some ordinary epidemic virus and that the apparent neurological features were not in fact due to nerve pathology. Ramsay and the other proponents of the ME idea clearly argued as if McE and B were saying there was nothing wrong with the subjects at all but that seems to me a red herring.

Good answer. I had always assumed they said there wasn't an illness, too.

 

[Forbin]

If you ask a group of people to think of a number and not to confer and out of ten people the answers are 2,3,2,4,5,2,6,2,2,1 you can be fairly sure that they have conferred but you cannot be sure exactly which ones conferred because at least two of the 2s could well have been by chance.

If you assume the range of values is 1 to 6 (as in the example), the odds of this happening by chance is 1 in 76.78244571, which doesn't really seem so suspect. It's the odds of rolling 10 dice and getting 5 of a kind.




ETA: Corrected 1 in 66.65142857 to 1 in 76.78244571. This is for one specific "kind," like "2". The odds of getting any five of a kind with 10 dice in one throw are about 1 in 13 (1 in 12.79707).

 

[Jonathan Edwards]

If you assume the range of values is 1 to 6 (as in the example), the odds of this happening by chance is 1 in 66.65142857, which doesn't really seem so suspect. It's the odds of rolling 10 dice and getting 5 of a kind.

I was assuming people would assume the choice was 1-9! It could have been 1-100. The conclusion remains the same!

 

[Mithriel]

They set out to find a case of mass hysteria so they included the things in their paper that "proved" it. This was not a case of people involved with a situation trying to understand it. In the usual way we have found the Royal Free mass hysteria is now used to as evidence that mass hysteria exists.

I doubt if people nowadays can really appreciate the way that early BPSers spoke about women. Being female was in itself enough to be at high risk of suggestibility, it smacked of Victorians thinking women's natures could not cope with reading a newspaper.

The Royal Free trained a lot of women doctors so the staff were more female than normal. It makes sense that staff would carry on after they were ill in a selfless manner, medicine was often seen as a vocation in those days and women with a profession would not want to show weakness. They were also likely to be middle class and to have been brought up in much more sterile conditions than the working class people in the surroundings. My mother's family shared a toilet with 3 others each having 7 children.

I am very dubious that mass hysteria exists in the way it is presented here. I also cannot see why the doctors at the hospital should be considered as inadequate. They knew infections and medicine. Is it more likely that the doctors were deluded and incompetent so that they could not recognise genuine signs of disease than that MCE & B cherry picked examples (Ramsay complained that they used patient records that he had not considered to have ME) to confirm their speciality. Ramsay was an old fashioned gentleman of a doctor with no ambition beyond helping his patients, not like the other side who were concerned with making a name for themselves.

Some of the epidemics may have involved young women but not all by any means. One was in an army barracks (all men) in Switzerland.

With what we know about the likes of MS, SW etc do we really think that theories of mass hysteria were any more than an early attempt to discredit our illness?

 

[Jonathan Edwards]

I understand that it's possible that commonly accepted wisdom about ME may be wrong.

But which is the 'commonly accepted wisdom'?

The relevance of the outbreaks for me is that they distract from a useful scientific discussion of ME as it affects hundreds of thousands of people today and thereby distract from useful advocacy. My feeling is that if ME advocacy literature refers to these as 'outbreaks of ME' or to ME as 'sometimes epidemic or occurring in outbreaks' it invites exactly the sort of dismissal that needs to be avoided. What is much more accurate is to say that ME often follows an infective episode, with the incidence appearing to vary with the type of infection and in a very tiny proportion of cases occurring as case clusters during epidemics.

Reference to the 'ME' outbreaks also gives PWME the impression that they suffer from a disease that in some cases has specific neurological features like paralysis of a limb. That seems to me very unhelpful.

 

[Jonathan Edwards]

With what we know about the likes of MS, SW etc do we really think that theories of mass hysteria were any more than an early attempt to discredit our illness?

I appreciate your fervour @Mithriel, but I think it is important to take the evidence on its merits. As someone trained in neurology I recognise the analysis McE and B make as in line with reliable practice. In contrast, Ramsay's account is vague and pretty implausible at times. To describe so many apparent focal neurological signs and find no objective evidence is worrying.

I think PWME would be much better off accepting that this was all a muddle that adds nothing to understanding.

 

[chrisb]

I am afraid that this is all moving much too quickly for me and I will try to catch up. However in the meantime I would just mention a point that Jenkins makes, but which as yet I am unable to rediscover.

She says, and I paraphrase from what I recall-I will relate her words when I find them-, that there is an inevitable bias in favour of reporting and recording of nurses' illness as it tends to affect the management and running of hospitals, inconveniencing management in a way which the illness of others would not. The necessity for possible contagion control is also influential.

To an extent this is part of McE and B's second point about the epidemics arising from altered medical perception.

 

[NelliePledge]

I think most psychiatrists would use the first meaning. Histrionic disorder is its own thing, with its own meaning.

General public would think of second histrionic definition though. The first would never have crossed my mind as hysteria.

 

[Jonathan Edwards]

inevitable bias in favour of reporting and recording of nurses' illness as it tends to affect the management and running of hospitals

Part of the problem seems to be that anyone with an acute febrile illness in the hospital and a whiff of some neurological symptoms got put down as one of the outbreak cohort. But the impression from McE and B I got was that of the rather few cases with symptoms that might have been interpreted as encephalopthy or myelopathy I high proportion were nurses (in fact glove and stocking is peripheral nerve so ME wasn't even a good name for these people). If dealing with an acute infection that is a nuisance because it stops people working, I agree that nurses might get overrepresented. But an unexplained encephalitis or myelitis would be a reason for admission to hospital even if noted by a GP. It would probably have come under the requirements of notification as a notifiable disease in those days. There is nothing trivial or ignorable about an encephalitis.

This is where I have a problem with the claim that there were similar cases being seen by GPs in the community. If the clinical picture that was being called 'similar to' is mild enough not to require urgent referral to A/E then I am not sure it is of great interest.

 

[chrisb]

View attachment 4053

Here is Melvin Ramsay’s own chapter on McEvedy and Beard if it is of any interest. Hope the files are readable! I think the main concern is the influence their opinion had on perception of ME thereafter. Edit: there are seven pages, not sure why one has displayed above my text.

On a recent trawl through ancient documents I came across something which is valuable supplementary evidence to the Chapter of Ramsay's book, so helpfully posted. For some reason the information seems to be omitted from the book although there was a general awareness of it. It seems potentially helpful to qote it.

At a Post - Viral Syndrome Workshop at Dunkeld, Scotland on 30.3. 85 Dr Ramsay stated, after a description of the 1955 outbreak,

In the subsequent written account of the outbreak at the RFH, details of 92 cases were deliberately omitted-these had been mostly nurses who had developed hysterical symptoms as a result of seeing their colleagues afflicted. It was now realised that this omission was an error because it enabled McEvedy and Beard in their subsequent study of the outbreak to establish their theory that the entire episode had been caused by mass hysteria. There is no doubt that ME is often accompanied by psychological symptoms and may include sleep disorders, even to the extent of a complete reversal of the normal rhythm. Six suicides had been recorded in patients with ME.

This seems to be highly significant. It is not obscure information. It is part of a 5 pages of A4, closely typed, summary and, as I have it, it must presumably have been issued to all MEA members at the time. One would expect any doctor in the UK dealing with the condition to have been aware of this. Perhaps this accounted for the caution in expressing views too loudly. It may be that Doctors at the CDC and Eisenberg and Straus were not familiar with this, allowing them to hold the views they did.

One would think that if 92 cases were omitted those patients would have been assessed by a consultant psychiatrist. One would expect any further marginal cases, and perhaps all cases, to have been similarly assessed. There was a willingness to distinguish between cases on full examination. Yet 15 years later after studying some case reports M and B came to their conclusions.

One wonders how Wessely, Hotopf and Sharpe could have, in 1997, concluded that:

Jenkins'conclusion seems the most reasonable: "the majority of cases were a hysterical reaction to a small number of poliomyelitis cases among the staff".

We know , of course, that Jenkins was taken out of context and her views badly misrepresented. I have discussed that on another thread. It would appear that these authors also must have been aware of the extrinsic evidence which rebutted this conclusion.

 

[wastwater]

One of the hallmarks was that it was a cluster outbreak very few mecfs are part of a cluster outbreak these days
Could it of been a coronavirus in evolution at the outbreaks
I remember some link to Far East as well

 

[Mithriel]

The polio vaccine became widespread after 1959 so the pattern of enterovirus infections changed. The thing to remember is that doctors of the time were very good at diagnosing enteroviral infections.

When the phoenix rising forum opened many people there felt that they had been part of a small outbreak among nursery staff is one I recall.

 

[DigitalDrifter]

This also doesn't fit Ramsay's description. Importantly, he notes loss of muscle power after exertion that took 3-5 days to return even in the acute cases (i.e., the PEM was there from the first few weeks of illness).

I'm not convinced that the rapid muscle fatigue-ability that Dr. Melvin Ramsay described was the same PEM we describe today, even people's descriptions of PEM don't all match up.

 

[Wonko]

I am convinced that 'they' have known about long term symptoms after a virus infection since at least the spanish flu.

So all the disdain, disbelieve, medical, social and welfare abuse were premeditated acts of policy, and not ignorance.

'They' knew that something that resembles ME existed and that in fact isn't that rare or uncommon after some viruses are resolved.
'
'They' chose to not just ignore this, but to lie about it, refuse treatment, or even the possibility of treatment, by deliberately and maliciously blocking or misdirecting research - with the attendant consequences on insurance/welfare payment.

It appears that the reason for this may originally have been historical, that it may have been felt that 'society' could not deal with the reality, so it was brushed under the carpet, and one hell of a lot of people committed to keep them out of sight - not to help the patients but to.... I don't know, but it isn't pretty.

With later cases a similar approach seems to have been used, describe suffers as suffering from a MH condition, or just lazy/malingerers, after all it had worked before.

All very 'unethical' and disturbing, not to mention wrong, but that aside, because this approach was used, and has been used for so long, no one knows much about what causes this, or how to treat it, so in 100 years we know no more about it than we did then.

I wonder how many could have been successfully treated, or at least treated better, or simply not suicided, if that 100 years had been spent researching and figuring out WTF is going on, what causes this.

 

[Mithriel]

I'm not convinced that the rapid muscle fatigue-ability that Dr. Melvin Ramsay described was the same PEM we describe today, even people's descriptions of PEM don't all match up.

I matched Dr Ramsay's description at the time and there are still a lot of people who have similar experiences to me. As the disease has been spoke about over the years things have almost gone in and out of fashion, like everything suddenly being about fatigue and not the abnormal response to exercise.

PEM is multifaceted which is why describing the ME response as abnormal may be useful. Researchers often seem to think it is just a prolonged recovery from exercise and so they think they find it in lots of other diseases. That may happen in ME but other things go wrong too.

I come to a sudden stop and have to wait a few seconds before I carry on.
I can't repeat actions more than once or twice without resting. Both of these I think of as rapid muscle fatiguability.
Then there is the immune response with swollen glands, sore throats and general flu like feeling.
The delayed response especially when you don't feel you did too much at the time is not common in other diseases.

But overall, the thing that makes ME now the same as the ME described by Ramsay is the variability of the disease. As he said, symptoms vary over hours, days, weeks, months and years. Except for some cases at either end of the spectrum we never know what we can do on a given day.

 

[DigitalDrifter]

As he said, symptoms vary over hours, days, weeks, months and years. Except for some cases at either end of the spectrum we never know what we can do on a given day.

My limitations don't vary hour to hour or between days, I'm very severe and never have miracle cures or good days. There are plenty of ME patients who's symptoms don't wax and wane.