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Cfs outbreaks explanation

Obermann

Give ME a break
Messages
9
Location
Stockholm, Sweden
It is possible that there has been an increase in the incidence of ME, but I think that reports from doctors and insurance companies may be biased and simply reflect higher awareness among patients and doctors. It is strange that such a large increase in incidence is not reflected in the number of recorded epidemics.

By the way, polio vaccines were assumed to decrease the incidence of epidemics, not increase it.

I agree that Epstein–Barr virus may not be the causal agent of epidemic ME, because the incubation time doesn't match. Enteroviruses have been implicated for a long time, partly because of the documented interference with poliovirus. However, although Coxsackie B fits the bill in many respects, tests for the virus that were carried out in some epidemics turned out negative. The pathogen (or pathogens) behind epidemic ME is still unknown.
 

HowToEscape?

Senior Member
Messages
626
Something changed in the world of ME/CFS during the 1980s, because there was an apparent 5- to 8-fold increase in the incidence of ME/CFS during this decade. See this thread:

Fivefold to eightfold increase in the incidence of ME from 1980 to 1989

One speculation is that the introduction of the poliovirus vaccine decades earlier may have caused this huge increase in incidence. Because natural poliovirus infection may confer some immunity to the enteroviruses linked to ME/CFS, once natural poliovirus in the wild was eradicated ....

This may be theoretically possible, but instictively I don’t think that humanity is suffering from a deficiency of polio virus.
 

Hip

Senior Member
Messages
17,858
However, although Coxsackie B fits the bill in many respects, tests for the virus that were carried out in some epidemics turned out negative.

Would you know which type of tests were used? After the acute phase of coxsackievirus B infection is over, and the chronic phase begins, you find very few viral particles in the blood. Tests such as the complement fixation test for CVB will usually come back negative in chronic CVB patients.

Dr Chia found that antibody neutralization tests are the only reliable blood test for detecting chronic CVB.
 
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Obermann

Give ME a break
Messages
9
Location
Stockholm, Sweden
The tests of Coxsackie viruses that were administered are not described in detail. In the paper on the Royal Free epidemic, it says: "The presence of a vesicular stomatitis in some patients, combined with painful spasm of the muscles of the trunk, was suggestive of a Coxsackie infection, but the absence of a meningeal reaction in the cerebrospinal fluid, and the failure to identify the causal virus, excluded this diagnosis."
 

Mithriel

Senior Member
Messages
690
Location
Scotland
This may be theoretically possible, but instictively I don’t think that humanity is suffering from a deficiency of polio virus.

Other enteroviruses occupy the niche left by poliovirus and still cause epidemics in places like India.

The detection of viruses was very difficult at that time. I think they were still grown on fertilised eggs (as viruses only grow in live cells) It took a long time to identify polio virus as the cause of polio because lots of people got infected but only a few developed polio and it is similar for Coxsackie viruses. Most people have had a CVB infection, though my own test said it was a current infection I had even though I took it at a random time after years of illness.

All the enteroviruses are closely related, so much so that even today labs only look for enterovirus species in the first instance and then send samples to specialised labs to identify it further.

As far as I remember, the Royal Free was based at several separate sites, definitely no algal blooms and toxic moulds would have had a different pattern of impact. You would expect it to start in a big way as everyone who used a room became ill at the same time, then carry on sporadically until the season changed or there was a big clean. Nurses became ill as they were called from other sites to deal with the wards that were kept open. I read a report from one nurse who said talk among themselves was it was flu.

These were the days when antibiotics were just becoming generally available so everything was bleached clean and windows were kept open for air flow (TB was treated in wards like verandahs that were open to the outside. Snow was wiped from the beds if neccessary:))

I would be interested to know how many of the people who became ill went on to have a lifelong disease.
 

Hip

Senior Member
Messages
17,858
Other enteroviruses occupy the niche left by poliovirus and still cause epidemics in places like India.

One sometimes see this idea of viruses "occupying a niche" stated, but I think that's a bit of a vague way of expressing the concept of CVB moving in after poliovirus was eradicated.

The precise mechanism by which coxsackievirus B infections may worsen in the absence of exposure to natural wild poliovirus infections is theorized in this paper, which says that wild poliovirus infection may educate the immune system to produce stronger T-cell responses against other enteroviruses (cross-immunity), and in this way, prior exposure to poliovirus may strengthen immunity against later exposure to coxsackievirus B.

What we desperately need is a vaccine against coxsackievirus B to be given alongside the poliovirus vaccine.
 
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Hip

Senior Member
Messages
17,858
As far as I remember, the Royal Free was based at several separate sites, definitely no algal blooms and toxic moulds would have had a different pattern of impact. You would expect it to start in a big way as everyone who used a room became ill at the same time,

That's right, the Royal Free hospital was based at different sites, and staff from more than one site were being hit with ME/CFS. Details about the sties given in this paper and this paper about the Royal Free outbreak. But there may be buildings that were shared by all staff, such as the training school building. And staff may have circulated from one site to another.

I don't think moderate amounts of mold exposure would necessarily trigger illness just on its own; but it may weaken or modulate the immune system in a way that makes the individual more susceptible to developing ME/CFS when later hit by a virus linked to triggering ME/CFS.
 
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anni66

mum to ME daughter
Messages
563
Location
scotland
Other enteroviruses occupy the niche left by poliovirus and still cause epidemics in places like India.

The detection of viruses was very difficult at that time. I think they were still grown on fertilised eggs (as viruses only grow in live cells) It took a long time to identify polio virus as the cause of polio because lots of people got infected but only a few developed polio and it is similar for Coxsackie viruses. Most people have had a CVB infection, though my own test said it was a current infection I had even though I took it at a random time after years of illness.

All the enteroviruses are closely related, so much so that even today labs only look for enterovirus species in the first instance and then send samples to specialised labs to identify it further.

As far as I remember, the Royal Free was based at several separate sites, definitely no algal blooms and toxic moulds would have had a different pattern of impact. You would expect it to start in a big way as everyone who used a room became ill at the same time, then carry on sporadically until the season changed or there was a big clean. Nurses became ill as they were called from other sites to deal with the wards that were kept open. I read a report from one nurse who said talk among themselves was it was flu.

These were the days when antibiotics were just becoming generally available so everything was bleached clean and windows were kept open for air flow (TB was treated in wards like verandahs that were open to the outside. Snow was wiped from the beds if neccessary:))

I would be interested to know how many of the people who became ill went on to have a lifelong disease.
Prof Behan tracked down and interviewed as many of those ill in the Royal Free outbreak in early 1980s. He and his wife found that most had never fully recovered and were recurrently ill throughout their lives. They found that it was a mitochondrial issue ( i think his wife was a pathologist) and postulated an autoantibody ... back in the 1980s
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
Something changed in the world of ME/CFS during the 1980s, because there was an apparent 5- to 8-fold increase in the incidence of ME/CFS during this decade. See this thread:
Mine started at the end of 1989 after 2 weeks of what felt like flu and things were never the same after this. I just couldn't recover properly and then followed severe episodes of vertigo/migraine that would leave me bed bound for weeks at a time. However between episodes my energy would come back until 2000 when I went into full blown ME.

Pam
 

Mithriel

Senior Member
Messages
690
Location
Scotland
When I changed my computer years ago I lost all my files so I can't check details, but some epidemics were known as epidemic vertigo.

I just do not think that toxic moulds could be the cause, though they could add to ill health afterwards. As I said, hospitals were ruled by matrons and the staff rooms would be kept clean as well in case infection was brought back to the wards. One epidemic was in a convent that was also a teacher training college. It was interesting because the teachers became ill but the contemplative sisters did not. However one thing all convents had in common was their cleanliness. I have never seen such beautifully polished floors and furniture.

Thinking back to the 50s, attitudes to cleanliness were different, it was seen as a moral worth. My family came from extreme poverty but their pride came from hand me down clothes that were beautifully darned and scrupulously clean. This contrasted with the fact children played outside from an early age (few cars!) and happily roamed filthy bomb sites.

One theory is that this early exposure built up a good immune system and gave them a healthy microbiome as well as exposing them to pathogens while they were best able to fight them off. (Children's diseases are much more serious in adults) Polio affected the middle class more than the slum kids.

By the 80s things were changed. On the one hand, children were much more isolated and lived in much more sanitary conditions but the idea that a messy home meant a fulfilling life was becoming prevalent and we all started to acquire more possessions. It is impossible to clean a house to old fashioned standards when they are full of things.

People started to forget about infections. It amazes me that so many people treat infections as if they are someone's fault and don't seem to realise we are in a war with parasites. I can't stand people spitting; there were notices on buses and it was more acceptable to discreetly pee in public than to spit (the dreaded TB).

Then you have antibiotics killing off good bacteria becoming common. Also some diseases just go away for a bit. Scarlet fever was a big thing in my schooldays. It is a form of disease caused by a common bug (strepptococcus, I think) but it just stopped happening. Now it is having a resurgence.

Then there is cholera which became infected with a virus in Victorian times and became much more virulent. It is a world we barely know.
 

Wishful

Senior Member
Messages
5,740
Location
Alberta
I'm not in the mood for reading the papers on the outbreak right now. Did they mention whether the staff had had vaccinations before the outbreak? It seems like something hospitals might require for their staff. Likewise the outbreaks in other places might have had a local vaccine campaign or some such thing.
 

anni66

mum to ME daughter
Messages
563
Location
scotland
Prof Behan tracked down and interviewed as many of those ill in the Royal Free outbreak in early 1980s. He and his wife found that most had never fully recovered and were recurrently ill throughout their lives. They found that it was a mitochondrial issue ( i think his wife was a pathologist) and postulated an autoantibody ... back in the 1980s
link to youtube interview with prof behan where he discusses Royal Free
 

Mithriel

Senior Member
Messages
690
Location
Scotland
I'm not in the mood for reading the papers on the outbreak right now. Did they mention whether the staff had had vaccinations before the outbreak? It seems like something hospitals might require for their staff. Likewise the outbreaks in other places might have had a local vaccine campaign or some such thing.

Vaccinations were not so common in those days. Smallpox was given as a baby. The staff were of different ages so that would not have been a factor. Also the fact that the disease was transmissible to primates precludes vaccines or environmental factors, or psychological for that matter.
 

Wishful

Senior Member
Messages
5,740
Location
Alberta
I wasn't thinking of childhood vaccinations, so staff ages wouldn't be a factor. I was thinking that maybe a hospital might provide mandatory vaccinations for whatever was fashionable at the time, the way flu vaccines are today. Maybe it didn't work that way in earlier decades, but just offered as a possibility. There might have been other fashionable factors, such as fad diets. Another possibility is an otherwise innocuous disease (minor cold or whatever) that just happened to be particularly good at triggering ME/CFS.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
Really, there is no getting away from the fact that there were many epidemics and they were caused by infections just like all the other epidemics at the time. They happened to different types of people across different continents, often in communities where people mixed closely, shared a core set of symptoms, victims were usually the most active and it was often associated with polio in the greater population.

The doctors of the time were very knowledgeable about infectious diseases, an expertise that has been lost.

The long term disease caused by ME may be similar to the long term outcomes of other things, there may be something fundamental that gets broken - many things cause damage to the lungs for instance - or they may be different illnesses.

However, many infections are subclinical, you get infected but don't realise it. After that a stress on the immune system, like a toxic mould or a vaccination could wrongly appear to be the start of the disease. MS usually starts at a time of stress but that could just be when the symptoms become apparent. My husband was very ill with a thyroid storm after flu but looking back we can see that he had minor symptoms of overactive thyroid for a while before but it was not enough to seem like disease.