Were historic 'ME' outbreaks really ME?

I forgot to add that they said that patients had to be examined very carefully as even that amount of exertion made them worse. So PEM was there right from the first.

Vaccination changes expression of diseases. About 1980 when my daughter was three, there was a measles outbreak in our area. Children like her who had been vaccinated became ill, the sickest I had ever seen her, but the ones who had not been vaccinated were hospitalised. They had beds in the hospital corridor as the wards were full.

 

I fear that I may find this subject to be of greater interest than others do, but hey ho...

On rereading McE and B it is clear that they distinguish between "mass hysteria" and individuals suffering from hysteria, whether in a mass or not. Mass hysteria appears to be an otherwise unexplained group reaction in a situation of suggestibility and apprehension. They make clear that there is no imputation of "hysterical" characteristics, of the sort usually associated with the word, in the individuals concerned. It is to this which I thought the idea of suggestibility was similar.

To revert to the early post about seeing some justification for SW's views one can see what he might have intended, although it might have been better for him to make clearer the distinction between "hysteria" and "mass hysteria". I now interpret SW as saying that "epidemic ME" involved "mass hysteria" but that this does not equate to CFS (or, by extension, ME). This seems a valid argument, but only if one accepts that epidemic ME did involve mass hysteria to any substantial degree. It is inevitable that in any group there will always be cases at the periphery, and it may be that some of the epidemic cases were as difficult to classify as are some sporadic cases.

The reason SW gets into difficulty is that he previously stated "Jenkin's conclusion seems the most reasonable "the majority of cases were a hysterical reaction to a small number of poliomyelitis cases among the staff"", although this was not Jenkin's expressed view. Her expressed view was very different. This might lead people to suppose that SW considered the cases to involve hysteria rather than the different "mass hysteria". Words are important.

I beg to differ on the question of the relevance of this. It seems to me that the problems over "ME" arise from the well known difficulty of attributing names and qualities of the whole to a part, and of the part to a whole- like synecdoche, but different. There is then the further problem of imagining that the taxonomic choices one makes reflect discoveries about the world rather than arbitrary choices, which could have been different.

There were a number of epidemics caused either by a virus, a group of viruses, or different viruses causing a similar spectrum of symptoms, of either acute or insidious onset, some involving paresis, some not. To these epidemics in general was ascribed the name benign myalgic encephalomyelitis, without distinguishing what aspect of the illness the name was ascribed to. These epidemics would have been of historic interest only had not some of those affected continued to suffer from a chronic relapsing and remitting condition.

From the spectrum of symptoms Ramsay selected some as being characteristic, amongst them the chronic relapsing and remitting feature, others might disagree with his choice, and used the same name to describe his selection. Ramsay also seems to have broadened the possibilities as to causation.

The name has subsequently been applied by others to a broader range of symptoms. This does not tell us anything about the world, only about selected categories.

One might conclude that although the epidemic cases were acute they did give rise to cases of the chronic conditions and should not be a matter of indifference.

I should make it clear that the title of this thread, "Were historic "ME" outbreaks really ME?" was not selected by me. Were I to ask such a question, I would not have used the word "really", even in inverted commas, and would have put the inverted commas around the other ME-the original description having priority. However the answer to the question might be "it all depends what you mean.....by "were"".

Everyone within the epidemic outbreaks and suffering symptoms within the terms of the description, for which chronicity was not a necessary element, had ME. Of those only a proportion, we do not know what proportion, had the chronic illness "ME" as subsequently and variously described. Many of those currently with "ME" did not have ME.

This is not irrelevant. The epidemic cases will almost certainly be a significant part of one of the sub-groups which will emerge, and the relapsing and remitting nature, of at least the early stages, of that form of the illness should offer clues as to what might, and what might not, be relevant.

But that is only an opinion

 

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

 

This was what McEvedy and Beard said to justify themselves. I should have said that they suggested no abnormality other than being young and female.

Many people will feel that the diagnosis of hysteria is distasteful. This ought not to prevent its discussion, but perhaps makes it worthwhile to point out that the diagnosis of hysteria in its epidemic form is not a slur on either the individuals or the institution involved. Whereas it is true that sporadic cases of hysterical disability often have disordered personalities, the hysterical reaction is part of everyone's potential and can be elicited in any individual by the right set of circumstances
The occurrence of a mass hysterical reaction shows not that the population is psychologically abnormal but merely that it is socially segregated and consists predominantly of young females

 

Young? A large proportion of sufferers are middle-aged or menopausal.

 

It's assumptions like this that make me distrust their conclusions. And the fact they never examined any patients. Even if they had a kernel of truth, I don't trust their assumptions or conclusions.

 

But then how does this hypothesis extend to other patient groups where this group isn't the main cohort?

 

Well exactly!

 

lot of these

You can tell the quality of the work within the first few lines of the Summary

"We believe that a lot of these epidemics were psychosocial phenomena caused by one of two mechanisms, either mass hysteria on the part of the patients, or altered medical perception of the community."

"A lot"? How many? Which? If you can't tell me go away, and come back when you can.

 

The quote does not seem that unreasonable. If I remember rightly several of the outbreaks had a high proportion of hospital staff, especially nurses.

That points to a significant proportion of them involving a factor relating to those populations. "A lot" is a reasonable way of saying that. What you cannot possibly do with this sort of inference from an overall tendency within many examples is to point to precisely which examples depend on the relevant factor. The inference is based on a statistical weighting across a set. As for inverted funnel plots, it may allow you to draw conclusions about the set as a whole but not about the members. So an inverted funnel plot may tell you that a significant proportion of trial results have had their data 'tidied' but has no power to tell you which ones specifically.

 

That seems to me to be assuming one of the matters you are trying to prove. This is why I distrust statistics. No doubt the maths is all correct, but I wouldn't know about that.

What is the evidence that their is such a condition as mass hysteria mainly affecting young females, other than the fact that there are young females suffering from an unknown condition.

 

I don't get the first bit. McE and B are putting up the hypothesis that a lot of these 'outbreaks' involved suggestibility or altered medical perception. Altered medical perception might well go with a nurse population. Suggestibility has been recorded as predominantly affecting young females, or so they say. So the fact that several outbreaks predominantly affected nurses seems to corroborate the hypothesis.

It is not really a question of maths. It is common sense. 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. So if there is an observation that amongst outbreaks collected by someone else there was a high rate of nurses in several you have reason to think that that was relevant to the causation in at least some of the outbreaks, but you cannot be sure which ones or how much in each because in at least one outbreak it might be fortuitous.

I am not sure how extensive the literature is on suggestibility mainly affecting young females but they cite some references. I think it is a bit more than just an unknown condition. It tends to be a pattern of symptoms that would normally be expected to be accompanied by some objective findings, which are absent.

I agree that McE and B make use of some sloppy psychiatric argumentation but they focus on three very reasonable points. One is that the patterns of 'signs' look more like self-image patterns than neurological patterns. The second is that electrophysiology failed to find anything at all, when it should have done if there was pathology. The third is that far too many of the patients were young nurses to be by chance.

 

It could, but it does seem that these outbreaks affected hospital workers much more specifically than other post-infective illnesses. Reiter's, for instance, was first described in a troop ship of (male) soldiers. Hepatitis A was notoriously found in homes for children with learning difficulties.

What one might comment on is that the two most influential outbreaks occurred in the hospitals of two eminent academic infectious disease experts (Ramsay and Acheson).

 

One thing worth pointing out is that in many of the outbreaks, the ratio of men:women was 1:1. Ramsay actually lists the ratios for every outbreak, presumably as a counterpoint against the claim that it was primarily young women. I don't have the book to hand to quote from it, however.

Apparently, EEGs were also done, and came back positive. Again, there's a discrepancy between what they say and Ramsay says. This might require some detailed analysis by someone who's good at this sort of thing, to really compare what they're both talking about objectively. It seems to me both parties are invested in their own interpretations, and that makes me wary of taking either text at face value.

 

Whether past ME epidemics were mass hysteria or not is irrelevant. Science has moved on and confirmed that patients today are indeed sick with something. One can't really prove one thing or another when events occurred so long ago. The people that like to begin their talks about ME with anecdotes about hysteria or neurasthenia appear to be doing so to prepare the audience to accept a narrative about false illness beliefs that in reality is unsupported by science.

As faras I know, the most recent outbreak of a ME/CFS-like illness was in Norway, due to contamination of the water supply with giardia. I haven't seen anyone suggest that this was mass hysteria.

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

 

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.