Twitter account will provide headlines & quotes from the 1955 Royal Free Hospital outbreak to the day when each headline appeared - 65 years later

I think it would be wrong to believe that there is only one BPS school and that Jenkins and Mowbray are to be associated with those we familiarly refer as being under the BPS banner.

EDIT It is not immediately apparent to what, in the quoted passage, exception might be taken. She quotes Acheson and Acheson was quoting the primary sources.

 

I didn't mean there was a problem with the quote, just a comment about the times. It was a strange time and things kept changing. The VP1 test at last gave a direct way of seeing persistent virus in people with ME especially when it was found in the brain at autopsy. Discovered by Mowbray - great news.

Then he changed the name to Post Viral Fatigue syndrome - what!! he just found virus after years of looking! Overnight PVFS became the "official" name to the extent that Ramsay's publisher refused to publish his book unless he changed to name to PVFS instead of ME. It also brought in confusion with post viral fatigue which persists to this day.

Then he published the book with Jenkins, who was not a name I recognised, and bits of it have a worrying focus on emotional causes (I can't remember the details, just the dismay) Then overnight, both of them were gone from the ME world, the VP1 test was forgotten, CFS and BPS approaches took over the world and we suddenly had a disease where fatigue was the primary symptom and all link with exertion was gone.

I still feel resentful at what was done to us just when the future had become hopeful and find it hard to forgive some of the people involved.

 

https://twitter.com/user/status/1286799859178143747

https://twitter.com/user/status/1286799986353754112

https://twitter.com/user/status/1286800107132743680

https://twitter.com/user/status/1286800291040579589

 

https://twitter.com/user/status/1287080347692302338

https://twitter.com/user/status/1287161234643722241

https://twitter.com/user/status/1287161368345489410

https://twitter.com/user/status/1287161489925771267

https://twitter.com/user/status/1287161718091796480

 

https://twitter.com/user/status/1287161781526331397

https://twitter.com/user/status/1287401369943646212

https://twitter.com/user/status/1287523458679742467

https://twitter.com/user/status/1287523555102597123

https://twitter.com/user/status/1287523650514702336

 

https://twitter.com/user/status/1287523757200945157


https://twitter.com/user/status/1287519947103653891


https://twitter.com/user/status/1287691361769132034

 

Interesting to see in the thesis the suggestion that one person remained ill for a year. This was claimed in the 1970 papers but it is clear from the 1973 follow up that they were aware by at least 1969 that at least 7 of the 100 (or fewer given the failures to respond) remained ill.
A Controlled Follow-up of Gases Involved in an Epidemic of ‘Benign Myalgic Encephalomyelitis’

• Colin P. McEvedy (a1) and A. W. Beard (a2) https://doi.org/10.1192/bjp.122.2.141
• Published online by Cambridge University Press: 29 January 2018

 

Eyseneck personality inventory in PhD says it all really .....
there is data in the appendices for those who can get their heads around it.

 

There is a somewhat surprising element to both the thesis and the 1973 paper. It is usually stated that no patients were diagnosed with the condition. It seems this is false. Both in-patients and out-patients were diagnosed, though admittedly in relatively small numbers.

I have previously looked for the 1973 paper and been unable to find it. It seems to have been put online only in 2018.

It now becomes clear that the two 1970 papers and the one frrom1973 were all based on the one thesis. The fact that one paper was published three years later than the others gave rise to the impression that it was based on later research. Opinions seem to have crystallised on the basis of the two early papers published in the BMJ. This is a somewhat strange state of affairs.

 

Sporadic muscle twitching may be amusing?

Uh, OK. Not my kind of "amusing" but OK.

 

LOL, I was struck by that phrase too, and really wanted to be able to read the rest of the sentence to find out the context of what the heck they were on about. When I get sporadic muscle twitching, 'amusing' isn't quite the word I would choose!

 

McEvedy didnt consider that the prevalence of it among females was because the nurses were female, it spread in the nurses homes etc.

 

Jenkins quotes Gosling P (1970Epidemic Malaise BMJ 1, 499-500) as saying

Secondly, in 1955, a very high proportion of the staff and student population and all the nurses at the Royal Free Hospital were females. Most of the male students were at that time preclinical and were away, as it was the long vacation. Even in term time there was minimal contact between clinical and preclinical students and between male and female staff. These factors would have contributed to the lower frequency of affected male students and should be considered in any epidemiological assessment of the relative risk to each sex.

 

Thanks for mentioning this.

I'm the one curating the account and I'm partially responsible for the research (as mentioned in the bio).

 

In fairness it's an old article and the contributor may (I don't know but I'm using "may") have had their tongue in their cheek slightly.

I'm sure we'll release the whole article in due course. It's not online as far as we know and we've had this for nearly a decade.

 

Oh how wonderful that you're also on this forum, @AR68 ! This was such a great idea and I'm looking forward to learn more about the Royal Free Hospital outbreak. Thank you for doing this!

 

We had the research stored away for a number of years.....and along came the 65th anniversary and covid-19.

Only some of the research is being released as there are plans to release much more at a later date but when I saw stories of people referring to post-covid complications it was an opportunity that could not be missed.

 

Thanks very much for all your work on this, it is so important to keep all this history of ME.

 

What will be interesting to see is whether the contemporaneous reporting gives any indication of particular anxiety sufficient to cause a hysterical response. One of the problems I have with the hysterical explanation is that its proponents seem unable to agree amongst themselves which are the cases of hysteria and which the cases inducing the hysteria.

McEvedy seems to suggest that the "severe" cases of "encephalitis" are clearly hysterical . SW seems to suggest that it it the less severe cases that are hysterical in response to some cases of supposed poliomyelitis, which are presumably the ones Mcevedy thought hysterical. They seem unable to get their quacks in a row.