ME outbreaks in the Swiss Army in the 1930s

[eric_s]

I just came across this entry on the NICE Guidelines Blog:

http://niceguidelines.blogspot.com/2011/02/pace-trial-results-are-out-me-is-caused.html

As if to illustrate this point, two of the very first outbreaks of ME happened in 1937 and 1939 both in the Swiss Army, affecting 130 and 73 soldiers/officers respectively.

I had no idea, this is the first time i'm hearing this. If i have some time, i might try to do some research on this. Maybe there is still archived material around. This might be interesting, because ME/CFS is not very well recognized here. Material from the army that shows these soldiers were physically sick and more or less wiped out could be interesting to show to doctors and even judges. Or also for informing the public. So they can see it's physical and also not something new.

If anybody has any further information about this, please post.

 

[insearchof]

Hi Eric

The following might be of interest to you

http://c4jrme.110mb.com/supplement221.htm

As this forms part of what is referred to as historical ME......there is a lot more general information on the subject in this thread

http://forums.phoenixrising.me/show...e-difference-between-ME-and-CFS-to-the-public

Also a wiki on this topic has also been started in the forum which is collecting historical literature on the topic, which you might also find useful.

 

[eric_s]

Wow, thanks a lot. There is quite detailed information on this page, with references and everything. I'm pretty sure it should be possible to find out more about this. It will have to wait a bit, beacuse i'm really a bit overloaded and need a break, but it's not something that will run away... I'm really wondering, because not even the local ME/CFS org has ever mentioned these outbreaks, at least i've never heard about them. But it's something very important, in my opinion, if it was the same illness.

 

[justinreilly]

Wow, thanks a lot. There is quite detailed information on this page, with references and everything. I'm pretty sure it should be possible to find out more about this. It will have to wait a bit, beacuse i'm really a bit overloaded and need a break, but it's not something that will run away... I'm really wondering, because not even the local ME/CFS org has ever mentioned these outbreaks, at least i've never heard about them. But it's something very important, in my opinion, if it was the same illness.

There is a list somewhere on the web (sorry don't remember) with dozens of outbreaks listed (more than the usual lists of maybe a dozen)- I'm guessing 50 or 60 from 1934-1984 (plus there were many dozens more reported to CDC after 1984, according to Walter Gunn (former CDC CFS guy) that were ignored, so there is no record of them outside of CDC- if they haven't thrown them in the trash already) so there have been so many outbreaks that I don't think people comment on the individual ones much because they aren't that unusual.

But, yes, i agree looking into local outbreaks is a good idea and may help people understand or relate.

 

[rlc]

Hi eric_s and Justinreily, Heres a list of a lot of the ME epidemics and also has the names of the published medical literature on them, a lot of which can be found on the net, http://www.meresearch.org.uk/information/publications/ResearchPublications1934-1980.pdf

Some of the literature has been collected here with bobs help http://forums.phoenixrising.me/show...+ME+Research+Literature+and+other+information

Would be great to get hold of that suppressed CDC list of epidemics!

All the best

 

[justinreilly]

Hi eric_s and Justinreily, Heres a list of a lot of the ME epidemics and also has the names of the published medical literature on them, a lot of which can be found on the net, http://www.meresearch.org.uk/information/publications/ResearchPublications1934-1980.pdf

Some of the literature has been collected here with bobs help http://forums.phoenixrising.me/show...+ME+Research+Literature+and+other+information

Would be great to get hold of that suppressed CDC list of epidemics!

All the best

If I remember right, Hillary Johnson made a FOIA request for the materials on the outbreak reports to CDC and they sent only paperwork for a "sampling" of the outbreaks. They are listed in Osler's Web.

 

[eric_s]

Thanks. As soon as i can, i will try to read these things. Also feel free to pm me with any material or information about the Swiss outbreaks. Thanks. I will go to a meeting of the Swiss group in a couple of weeks and will show them the material, so maybe they can investigate this, so that i don't have to do it all by myself.

 

[Dan_USAAZ]

Hi Eric

The following might be of interest to you


http://c4jrme.110mb.com/supplement221.htm

District and Hospital epidemic in Los Angeles (1934)

My grandmother was a nurse at Los Angeles County General in the 1930s and my mother was born in Los Angeles County in 1937. My mother has been sick since childhood and was diagnosed with FM several years ago.

I have been ill since 1976, with additional symptoms and faster progression in the early 1990s. Maybe contracted a second virus in the 90s?

I speculate that my mother and I may carry whatever virus hit Los Angeles County in the 1930s. It should be very interesting as more is learned about these viruses and the various strains. We may one day be able to trace our illness back generations to specific outbreaks, based on the virus(s) we carry and the evolution of the strain?

I do not have a science background, so some of what I post above are more questions than statements. I appreciate any input/comment from those more knowledgeable.
Thanks!

 

[justinreilly]

Dan, Your story is fascinating; it may be part of the puzzle for us all. Very sorry about your family's long ordeal.

Not a scientist, so am useless in commenting on your science questions unfortunately. I suggest being in contact with those who are maintaining info or looking into historical ME such as Dr. Gordon Parish
and Bob:
http://forums.phoenixrising.me/show...search-papers-and-articles-(wiki)-please-help

 

[Bob]

District and Hospital epidemic in Los Angeles (1934)

My grandmother was a nurse at Los Angeles County General in the 1930s and my mother was born in Los Angeles County in 1937. My mother has been sick since childhood and was diagnosed with FM several years ago.

I have been ill since 1976, with additional symptoms and faster progression in the early 1990s. Maybe contracted a second virus in the 90s?

I speculate that my mother and I may carry whatever virus hit Los Angeles County in the 1930s. It should be very interesting as more is learned about these viruses and the various strains. We may one day be able to trace our illness back generations to specific outbreaks, based on the virus(s) we carry and the evolution of the strain?

I do not have a science background, so some of what I post above are more questions than statements. I appreciate any input/comment from those more knowledgeable.
Thanks!

I've got to go through the list of articles on the wiki and categorise them into outbreak areas...
This is the only one that I've got under 'Los Angeles' at the moment...
I don't know if it's any interest to you Dan...
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1753720/pdf/calwestmed00378-0019.pdf

 

[ukxmrv]

Dan, I'm really sorry to hear both you and your Mother are both sick. My Mother was a nurse but didn't develop any symptoms until after an operation in later life. I'm been sick for nearly 30 years and we have other family members with similar illnesses. I recently found out that an Uncle by marriage (in another country) has had ME for a similar time as myself.

I just wish that some of the old doctors who knew about the ME outbreaks were still alive. Maybe someone will know.

It may be a good idea to register with the WPI to see if you can join one of their research projects.

http://www.wpinstitute.org/index.html

Jamie Deckoff-Jones also asked for family information recently as well.

http://treatingxmrv.blogspot.com/2011/04/informal-family-survey.html

 

[Dan_USAAZ]

Dan, Your story is fascinating; it may be part of the puzzle for us all. Very sorry about your family's long ordeal.

Not a scientist, so am useless in commenting on your science questions unfortunately. I suggest being in contact with those who are maintaining info or looking into historical ME such as Dr. Gordon Parish
and Bob:
http://forums.phoenixrising.me/show...search-papers-and-articles-(wiki)-please-help

Justin,
Thanks for the comments and link. I will need to spend some time going through that thread. I may have been there a couple weeks ago.

I agree, it is a fascinating story. Story being the operative word. As we learn more about the viruses over the coming years and the pieces of the puzzle start coming together, I hope to learn if this story is fact or fiction. This may be the case for many of us, assuming they do not shut down the viral research related ME/CFS. I have to think that there is enough momentum and visibility now that, even if XMRV does not pan out, the research into the other MLVs will continue.

Take care,
Dan

 

[Dan_USAAZ]

I've got to go through the list of articles on the wiki and categorise them into outbreak areas...
This is the only one that I've got under 'Los Angeles' at the moment...
I don't know if it's any interest to you Dan...
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1753720/pdf/calwestmed00378-0019.pdf

Bob,
Thanks for the link. I have started to collect information about the 1934 Los Angles outbreak and will add this document. I just learned of this outbreak in the last few weeks from a PR post. Possibly the link that Justin supplied.

As soon as I read about the Los Angeles County General outbreak, I called my mom to start getting more information about my grandmothers work history and health. I'm trying to create a tapestry of events and facts that may someday shed light on our families personal history with neuro-immune disease.
What would be really fascinating for me is to communicate with other descendents of 1930s Los Angeles County residents that have similar illnesses. Feel free to PM me.

Thanks,
Dan

 

[Dan_USAAZ]

Dan, I'm really sorry to hear both you and your Mother are both sick. My Mother was a nurse but didn't develop any symptoms until after an operation in later life. I'm been sick for nearly 30 years and we have other family members with similar illnesses. I recently found out that an Uncle by marriage (in another country) has had ME for a similar time as myself.

I just wish that some of the old doctors who knew about the ME outbreaks were still alive. Maybe someone will know.

It may be a good idea to register with the WPI to see if you can join one of their research projects.

http://www.wpinstitute.org/index.html

Jamie Deckoff-Jones also asked for family information recently as well.

http://treatingxmrv.blogspot.com/2011/04/informal-family-survey.html

Hi UK,
Very sorry to hear that you have been ill for so long and about the number of people in your extended family that have been affected. It is amazing to hear how long many of us have been down. Triggers like your mothers surgery seem to be so common. Another common trigger for women appears to be giving birth to their first child. Maybe the hormonal changes are the trigger. What a terrible affliction to be associated with such a glorious event.
I completely agree with your comment about the old doctors who knew about the ME outbreaks. When you read the symptoms of the patients in these outbreaks, they exactly match what we see in diseases like ME & FM today.

I did register with the WPI shortly after the 2009 science paper. I have not submitted my history to Dr. Deckoff-Jones site, but will do it soon. Thank you for the link.

Its good to see how much research is finally taking place into neuro-immune disease, but it is too bad it did not take place 25 years ago when it should have.

Eric, Sorry to have somewhat high jacked the Swiss Army Outbreak thread. If there is additional interest in the LA County outbreak, I can move it to another thread. Thx.

Take Care,
Dan

 

[rlc]

Hi Dan, dont know if you know about this, but the main document on the Los Angeles county general outbreak is this 90 page work

Gilliam AG. Epidemiological study of an epidemic, diagnosed as poliomyelitis, occurring among the personnel of the Los Angeles County General Hospital during the summer of 1934. US Public Health Bull. 1938; (No. 240): 1-90.

I havent been able to find it on line yet but you might be able to track it down somewhere.

All the best

 

[Dan_USAAZ]

Thanks rlc.
I have started looking for that document, but no luck yet.

 

[caledonia]

Here is a list of the ME outbreaks including the Swiss ones and LA County Hospital: http://www.name-us.org/ResearchPages/ResEpidemic.htm

There is more detailed information in this book: The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Edited by Byron Hyde, M.D.

I seem to remember that Byron Hyde examined patients from each outbreak to confirm that they had ME, but I don't remember where I saw this.

 

[ukxmrv]

I doubt if Dr Hyde was able to examine patients from each outbreak and confirm that they had ME as he is a "relative" newcomer to ME. He did travel around and talk to some of the old time ME doctors during the 80's epidemics for example. Dr Hyde learned from these original existing doctors about ME. Before CFS was invented there were existing ME docs (before Dr Hyde) that were called on when they were epidemics. I knew some of them.

No disrespect intended as I am glad that Dr Hyde did learn from them whilst they were still alive. I'm very glad that Dr Hyde developed an interest in ME.

 

[caledonia]

This sounds like a more likely explanation: http://www.name-us.org/ResearchPages/ResEpidemic.htm

Below is a summary list of 63 recorded similarly described epidemics around the world, as well as reports of sporadic cases of the same disease we've come to know as ME/CFS. The original complete list was compiled primarily by British physician Dr. J. Gordon Parish, based on bibliographies published by Acheson, Henderson and Shelokov. Dr. Byron Hyde added the more recent epidemics. The complete list including citations can be found in Dr. Hyde's textbook.

In other words, Hyde looked at the historical record for earlier epidemics, but did personally confirm later epidemics.

Therefore, for the Swiss epidemics, you should look at what Parish, Acheson, Henderson and Shelokov have to say.

 

[Bob]

I've just come across this paper and I can't work out if it's already been posted here...
It's got details of the Swiss Army outbreak and the Los Angeles outbreak:


Early outbreaks of 'epidemic neuromyasthenia' (Outbreaks = Los Angeles, Switzerland, Iceland, Adelaide-Australia, New York State.)
J. GORDON PARISH M.D., F.R.C.P. (C), D. Phys. Med. 1978
Passmore Edwards Medical Rehabilitation Centre, Clacton-on-Sea, Essex
Postgraduate Medical Journal (November 1978) 54, 711 -717
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425322/pdf/postmedj00263-0008.pdf