Any recent ME/CFS outbreaks?

[jesse's mom]

This is an interesting thread. The one thing that I have not seen discussed is that in areas like mine and I suspect many more areas, the medical community has NEVER heard of ME they are beginning to understand that Fibro and CFS are real and not psychological. Sadly, I had to really advocate for myself and even change Drs a few times to get a diagnosis. We could be having outbreaks and the patients are simply not being taken seriously until they are so severe there is
no ignoring it.

I don't know about all over the world, but here where I live there is so much misogyny in the medical community! When a woman gets ME/CFS and we can still stand up and do some things, we get pigeonholed into the old ways of thinking about the 'weaker sex'.

I wonder what the population of sick people are that have no idea what is wrong and the Drs send them to a psychiatrist and therapy and add antidepressants, and anti anxiety meds. I was called malingering and depressed for the first few years of becoming housebound. I bet I am not alone.

Thanks for the thead @Murph

 

[uglevod]

Not a total outbreak - just another study linking CFS with inflammation:
https://www.frontiersin.org/articles/10.3389/fneur.2018.01033/full

 

[alex3619]

if the dual hit hypothesis held I'd expect more stories of multiple people in one family coming down with MECFS at the same time.

There are lots of family clusters, but as you say there is an issue with timing. However these raise the possibility of a genetic risk factor. Also just because someone is exposed at one time point does not mean it will be a trigger. It might take several exposures to sequentially trigger, or each might be a separate trigger with its own risk. There is literally no way, yet, of determining the validity of a multiple hit hypothesis, either that its right or that its wrong. Its questionable either way. What we can say, for now, is that multiple hit ideas still remain unproven. They are not proven wrong.

 

[Hip]

In this theory, perhaps institutional environments have got better at reducing toxins in the environment (better airconditioining?) but toxins can still show up in home environments? Could that explain a decrease in outbreaks?

Yes, I think that's quite plausible. Toxins thought to be risk factors for developing ME/CFS include mold and pesticides. (My hunch is that if you are exposed to a toxin or factor that weakens antiviral immunity, and you happen to catch an ME/CFS-associated virus at the same time, that may allow the virus to hit your body harder, and to trigger ME/CFS).

In the 1950s when the Royal Free outbreak occurred, there was no real understanding that mold growing on the internal walls of buildings had ill health effects. So I wonder if decades ago, you might have had more buildings with internal toxic mold growths, affecting the immune systems of the occupants, and perhaps setting the scene for an ME/CFS outbreak should an ME/CFS virus arrive in that building.


Also I believe many decades ago, the foundations or materials of new buildings were sometimes heavily sprayed or soaked with pesticides to prevent insect infestations. So then occupants of those buildings would be exposed to these toxins.

On the other hand, if the dual hit hypothesis held I'd expect more stories of multiple people in one family coming down with MECFS at the same time. (mircro-outbreaks!) They should be exposed to the same viruses and toxins. Instead we tend to see people in the one family coming down with mecfs at very different times.

There are some studies that show a significant increase in incidence of ME/CFS in close family members, perhaps because they are exposed to the same viruses and toxins, and also because of genetic factors.

 

[Desertstorm]

Perhaps the biggest outbreak of ME/CFS was in conjunction with GWI in 1991/92 with over 150k troops from several nations contracting it. It is accepted by the VA that a combination of exposures and viruses were most likely the nexus.

 

[Hip]

What we can say, for now, is that multiple hit ideas still remain unproven.

There is some evidence for a dual-factor theory, which comes from the studies showing a high incidence of chronic stress just before someone comes down with ME/CFS.

I certainly do not believe in the "all in the mind" view of ME/CFS, but we know that chronic stress causes elevated cortisol and a consequent reduction in antiviral immunity.

So if you were unlucky enough to be hit with an ME/CFS-associated virus just at the time you were going through a period of chronic stress (from events such as divorce, bereavement, or major financial worries), the immunosuppressive effects of stress in combination with the virus may lead to ME/CFS.

 

[junkcrap50]

I recently got a subscription to a huge global newspaper archive and trawled through for old stories about ME epidemics. They were fairly commonly written up! I don't see that any more. To me this raises confusing questions about etiology.

On media bias.

Individual outlets have political leanings but there are enough outlets to cover the spectrum of political views. That balances out. Overall, the media is biased but not in the way you think. It is biased to what gets clicks.

Bad news and fear gets clicks. (Alex Jones is a great example!). Epidemics of dangerous unknown diseases would get huge clicks. If one outlet declined to cover that another outlet would jump on it. (My bona fides: I work in the media and editors never interfere with my stories. I got a big story on me/cfs into a rupert murdoch outlet a couple of years ago.)

We also have bloggers and social media. It would be very hard, I believe, to hide news of outbreaks.

We could be having outbreaks and the patients are simply not being taken seriously until they are so severe there is
no ignoring it. I wonder what the population of sick people are that have no idea what is wrong and the Drs send them to a psychiatrist and therapy and add antidepressants, and anti anxiety meds. I was called malingering and depressed for the first few years of becoming housebound. I bet I am not alone.

I think that medical bias (not media bias) and institutional/mainstream medicine has gotten more powerful. In the olden days, medicine was not as concentrated as it is now. And there far more caring, honest doctors, as well as doctors who maintained actual doctor-patient relationships (often for the patient's whole lives), that would take patient concerns more seriously and see drastic changes in their way of life. So, I think it's much, much harder nowadays for patients to be taken seriously and for doctors to accurately see what is going on. You're lucky now if a doctor actually listens to and believs you, much less visits with you beyond 5-10 minutes.

 

[junkcrap50]

There are lots of family clusters, but as you say there is an issue with timing. However these raise the possibility of a genetic risk factor. Also just because someone is exposed at one time point does not mean it will be a trigger. It might take several exposures to sequentially trigger, or each might be a separate trigger with its own risk. There is literally no way, yet, of determining the validity of a multiple hit hypothesis, either that its right or that its wrong. Its questionable either way. What we can say, for now, is that multiple hit ideas still remain unproven. They are not proven wrong.

There are some studies that show a significant increase in incidence of ME/CFS in close family members, perhaps because they are exposed to the same viruses and toxins, and also because of genetic factors.

Not just genetic risk factors but shared close environment too.

 

[Murph]

Perhaps the biggest outbreak of ME/CFS was in conjunction with GWI in 1991/92 with over 150k troops from several nations contracting it. It is accepted by the VA that a combination of exposures and viruses were most likely the nexus.

This is a huge and excellent example of @alex3619's theory that the outbreaks get attributed to their proximate cause and given another name. And me/cfs is mostly left with the non-outbreak cases.

I'm coming round to this idea explaining at least *some* of the decrease in me/cfs outbreaks. But I'm yet to be convinced it explains it all.... Something to pay attention to over time.

 

[Pyrrhus]

But once the virus spread beyond the locale (which a virus will inevitably do)

It depends upon the virus, and how transmissible it is. Highly transmissible viruses will spread to a large geographical area, while poorly transmissible viruses will remain confined to a smaller geographical area.

My hunch is that if you are exposed to a toxin or factor that weakens antiviral immunity, and you happen to catch an ME/CFS-associated virus at the same time, that may allow the virus to hit your body harder, and to trigger ME/CFS

Your idea ties in nicely with an observation that @halcyon made in another thread, namely that all known “non-flu” initiating events have one thing in common: immune suppression. Trauma, stress, overtraining, etc. all suppress the immune system, rendering one more susceptible to environmental infections.

 

[Hip]

When an infectious agent is first introduced into a given geographical population, it presents itself as an outbreak. As time goes on, more and more people in the geographical population develop antibodies to the infectious agent, and the infection becomes endemic to that given geographical population. As a result, the infectious agent ends up presenting itself as sporadic cases, rather than as an outbreak.

One interesting thing though is that certain viruses never produce outbreaks. For example, you never hear of a cytomegalovirus outbreak, even though cytomegalovirus infection in the general population is not at saturated levels (about 60% of adults have cytomegalovirus).

And I don't think you can ever have an HHV-6 outbreak, since most people acquire this virus within the first few years of life, and it is found in nearly 100% of adults. EBV can on very rare occasions cause a localized outbreak, but generally it is a virus that an individual will sporadically pick up in their late teens or early twenties, with 90% of adults carrying EBV.

Thus it seems clear that the main 3 herpesviruses linked to ME/CFS cannot ever create ME/CFS epidemics.


Whereas when it comes to the enteroviruses linked to ME/CFS (coxsackievirus B serotypes and echovirus serotypes), these have been around since the year dot, but are still known to produce outbreaks (I mean general outbreaks, not just ME/CFS outbreaks). For example, in China in 2008, there was an outbreak of aseptic meningitis caused by coxsackievirus B3.

I remember reading an article on enterovirus epidemiology, saying that you will find a certain enterovirus serotype emerging in a given country or region for a few years, then it may disappear for many years, for reasons that are not fully understood.

There are many serotypes of enterovirus, and I imagine that immunological cross-protection effects will occur, such that if a country or region has recently been hit with one enterovirus, then that region may have partial protection against similar enteroviruses. So cross-protection might in part explain the coming-and-going dynamics of enterovirus outbreaks.

 

[Murph]

Just for interest here's one of those early reports I was talking about, from when the condition was being called Iceland Disease.

 

[toyfoof]

I wonder what the population of sick people are that have no idea what is wrong and the Drs send them to a psychiatrist and therapy and add antidepressants, and anti anxiety meds. I was called malingering and depressed for the first few years of becoming housebound. I bet I am not alone.

This is my story. My actual physical disease is so intertwined with psychological diagnoses that I can’t unravel it at all, and if I were part of an outbreak no one will ever know. My high school alumni Facebook group had a poll a couple years ago asking if people had chronic illnesses or cancer, because some research was turning up higher incidences than normal. SO MANY people responded with horrible stories. I lived on a small island (9,000 population) surrounded by power plants and steel factories, and with a small airport that imported all sorts of strange things that would not go through regular airports. Our whole island probably has outbreak stories of many different diseases.

 

[rel8ted]

We also have bloggers and social media. It would be very hard, I believe, to hide news of outbreaks.

I agree. I have seen a few ME/CFS stories in the news over the holidays. (I do not have the energy to look for the specific links, sorry). I'm not of the mind that they are hiding us, rather that we are just not noticed and we need to raise our voice some more.....

 

[Desertstorm]

This is my story. My actual physical disease is so intertwined with psychological diagnoses that I can’t unravel it at all, and if I were part of an outbreak no one will ever know. My high school alumni Facebook group had a poll a couple years ago asking if people had chronic illnesses or cancer, because some research was turning up higher incidences than normal. SO MANY people responded with horrible stories. I lived on a small island (9,000 population) surrounded by power plants and steel factories, and with a small airport that imported all sorts of strange things that would not go through regular airports. Our whole island probably has outbreak stories of many different diseases.

Or as Ricky Gervais called it..."Don't want to go to work disease". I saw that on HBO went off at him. One joke and years of awareness efforts out the window. I doubt he would dare make an HIV joke.

 

[JES]

Or as Ricky Gervais called it..."Don't want to go to work disease". I saw that on HBO went off at him. One joke and years of awareness efforts out the window. I doubt he would dare make an HIV joke.

Gervais has joked about AIDS, famine, Holocaust, etc. numerous times, can easily be found on Google. I agree that targeting ME/CFS may not have been the best of his ideas, but Gervais is the least part of the problem. His joke probably brought some more exposure as well.

 

[Desertstorm]

Not a huge problem perhaps but not at a help certainly. Those jokes are repeated in schools and dare l say offices across the world now. I recall the same sort of TV jokes about gays bandied about in the same manner by us in sixth form. Not knowing two our fellow students were in fact gay and were forced by social pressures to participate. Comedians have constructed a force field around their universe to protect them from criticizism when they stray into controversy.

That is breaking down now as we all can see with past tweets and jokes take them down from within the industry and a flood of Mia copas become the norm.

I was using gervais as an example of the ignorance we are fighting ont battle at a time.

Not to come off as a prude here just making s point I feel is valid and perhaps and bigger thing than one might think. Or not.

Dads army...now that was funny

 

[HTester]

This is a really interesting thread. I too have been struggling with the question of why no 21st century epidemics. If I've remembered everything that's been suggested in this thread, here are the theories.

1. The number of sick buildings has decreased.
2. CFS is called by other names. e.g. GWI, post-(name your favorite vector) illness, etc.
3. Systematic/intentional under-reporting for whatever reason
4. CFS outbreaks have stopped (at least temporarily)

But Murph's point is still hard to avoid: dozens of reported outbreaks from 1934 to 1996. Zero reported after 2000. Why?

Is there a way to poll the readers of PR or even broader CFS patient populations and ask: If you got sick with CFS after 2000, are you or your family/friends aware of other CFS patients in your local geographic area who got sick at the same time as you?

 

[Hip]

Is there a way to poll the readers of PR or even broader CFS patient populations and ask: If you got sick with CFS after 2000, are you or your family/friends aware of other CFS patients in your local geographic area who got sick at the same time as you?

If you post a new thread (for example in the General ME/CFS Discussion forum), there is an option of including a simple poll at the beginning of the thread. There's usually quite an enthusiastic response to polls on this forum.

 

[Murph]

Is there a way to poll the readers of PR or even broader CFS patient populations and ask: If you got sick with CFS after 2000, are you or your family/friends aware of other CFS patients in your local geographic area who got sick at the same time as you?

"Found" outbreaks might be possible but you'd think that might tend to overstate their frequency. The superior comms technology we have now should already act to "find" outbreaks that might have been missed before.

What I'm trying to say is: our superior interconnectedness should make it easier to spot outbreaks now but instead we see the reverse which makes their reduction all the more surprising.