Any recent ME/CFS outbreaks?

[Murph]

According to ME-Pedia the last outbreak was in 1996. Is this really true?

https://me-pedia.org/wiki/List_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome_outbreaks

That is well over two decades ago now. Almost a quarter century. In the 1950s there were dozens of recorded outbreaks. The age of the internet began around the time the outbreaks stopped. If there were still outbreaks people would be flooding into this website and other places. I find it highly unlikely an outbreak could have happened and not been noticed. I can only conclude outbreaks are on hiatus.

If it is true we have to assume something important has changed. Hospital sanitation protocols? viral mutation? Other?

I got sick all by myself. I suspect 99.9% of us did. Is this disease now different to what it was when it had an outbreak form?

 

[nandixon]

Survivors of the 2014 Ebola outbreak in West Africa appear to be reporting similar symptoms to ME/CFS. See, e.g.:

https://www.cdc.gov/vhf/ebola/treatment/survivors.html

 

[ukxmrv]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598369/

A high prevalence of chronic fatigue has previously been reported following giardiasis after a large waterborne outbreak in Bergen, Norway in 2004. The aim of this study was to describe and evaluate differential diagnoses and natural course of fatigue five years after giardiasis among patients who reported chronic fatigue three years after the infection.

53 patients were included. CFS was diagnosed in 41.5% (22/53)

 

[PhoenixDown]

I don't think ME is one illness.

 

[alex3619]

I don't think they are reported as ME or CFS outbreaks. They are reported based on the pathogen triggering the outbreak ... such as Q fever or giardia. Yet there is a lot of uncertainty here. There is also the issue that many patients get diagnosed these days that have nothing to do with a pathogen outbreak. If you are in an outbreak though, the doctor will tell you its Q fever or giardia or whatever it is. Not ME or CFS. That is why there is a proliferation of post pathogen claims. Like post Q fever.

 

[Murph]

Survivors of the 2014 Ebola outbreak in West Africa appear to be reporting similar symptoms to ME/CFS. See, e.g.:

https://www.cdc.gov/vhf/ebola/treatment/survivors.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598369/

A high prevalence of chronic fatigue has previously been reported following giardiasis after a large waterborne outbreak in Bergen, Norway in 2004. The aim of this study was to describe and evaluate differential diagnoses and natural course of fatigue five years after giardiasis among patients who reported chronic fatigue three years after the infection.

53 patients were included. CFS was diagnosed in 41.5% (22/53)

Thanks. These are both good examples. They prove outbreaks have not stopped.

But still. Global population is now three times higher than it was in 1950. The entire world is connected (we may not have heard so much about West African ebola outbreaks in 1950!). To me, the decline in outbreaks is marked.

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.

If we imagine that the illness is a result of a certain kind of virus and a certain kind of predisposition. And we know viruses mutate. Then perhaps the viruses that cause MECFS are now less virulent or have longer incubation periods such that outbreaks show up less or less obviously?

One last point - a lack of outbreaks is unhelpful for advocacy. The absence of well-known outbreaks means nobody fears MECFS and it has permitted the psychological model to weasel its way into discourse.

What would happen if the next 100 cases of ME were not solo people coming down alone in their bedrooms but instead a high-profile outbreak among a highly-visible, well-connected and highly privileged group? Perhaps a conference of New York attorneys? A graduating class at John Hopkins? Something to rally a bit more attention and money to this disease!

(to be clear I'm not wishing illness on anyone here! Just saying that if we're going to have another 100 cases around the world this week - and surely we will - it'd be helpful for them to be more visible.)

 

[alex3619]

I don't think ME is one illness.

It might be but its more likely its several. However CFS is probably a huge number of illnesses, all lumped together. Certainly there are a huge range of triggering pathogens, though the usual culprits are either EBV or an enterovirus.

 

[Murph]

I don't think they are reported as ME or CFS outbreaks. They are reported based on the pathogen triggering the outbreak ... such as Q fever or giardia. Yet there is a lot of uncertainty here. There is also the issue that many patients get diagnosed these days that have nothing to do with a pathogen outbreak. If you are in an outbreak though, the doctor will tell you its Q fever or giardia or whatever it is. Not ME or CFS. That is why there is a proliferation of post pathogen claims. Like post Q fever.

So Alex the hypothesis here is that because we are better at spotting the pathogen we now characterise the illness as a specific "post-X" fatigue rather than a general MECFS diagnosis?

Should MECFS researchers be trying to add more of these groups to their studies perhaps?

 

[S-VV]

But still. Global population is now three times higher than it was in 1950. The entire world is connected (we may not have heard so much about West African ebola outbreaks in 1950!). To me, the decline in outbreaks is marked.

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.

Without trying to sound like Alex Jones, it's possible there are big forces at play. The vicious takedown of Mikovits is just one example.

ME (not CFS) is a well defined neurological illness, caused by viral damage to the nervous system, that can be readily diagnosed. There has been a concerted effort to hide this fact. When it is lumped with CFS, it hurts both collectives.

CFS is likely an amalgam on inflammatory-metabolic conditions, not unlike autism.

 

[Murph]

Without trying to sound like Alex Jones, it's possible there are big forces at play. The vicious takedown of Mikovits is just one example.

ME (not CFS) is a well defined neurological illness, caused by viral damage to the nervous system, that can be readily diagnosed. There has been a concerted effort to hide this fact. When it is lumped with CFS, it hurts both collectives.

CFS is likely an amalgam on inflammatory-metabolic conditions, not unlike autism.

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.

 

[Pyrrhus]

Two other factors should probably be considered when asking whether a given infection will present itself as outbreaks or as sporadic cases:

1) How recently a given infectious agent has been introduced into a given geographical population. 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.

2) How much transportation of persons there is between different geographical populations. When transportation of persons is rare, it is more likely that a given geographical population will not have encountered the infectious agent. This makes it more likely that an outbreak will occur when the infectious agent finally arrives in that geographical population. When there is widespread transportation of persons between different geographical populations, then the probability of a given geographical population having been exposed to the infectious agent rises, and the infectious agent will likely have become endemic in that given geographical population, resulting in sporadic cases, rather than as an outbreak.

Polio started out in the 1800’s as rare outbreaks in relatively isolated locations. As time went on, human transportation from the industrial revolution resulted in more outbreaks in more places. Urban centers that had previously suffered an outbreak started to see sporadic cases. By the 1950’s, polio had become endemic in most of the United States, and most polio cases were sporadic cases.

Since the 1950’s, there has been an explosion in human transportation, largely thanks to air travel. This has brought previously rare, isolated infections to all parts of the world. Zika and Dengue viruses are just two examples that have caught the headlines.

EDIT (2022):
See also this new discussion:
Due to the "pandemic-endemic transition", new viruses can initially show up as discrete outbreaks, but later appear just as sporadic cases.
https://forums.phoenixrising.me/thr...y-caused-by-a-now-seasonal-coronavirus.86397/

 

[alex3619]

So Alex the hypothesis here is that because we are better at spotting the pathogen we now characterise the illness as a specific "post-X" fatigue rather than a general MECFS diagnosis?

I think this is likely to be the case, which disappears the ME outbreaks.

ME was historically associated with polio outbreaks. Of course polio is now mostly eradicated, so this might be another reason there are no more outbreaks.

Its important to realise the vast majority of polio patients are not very sick, its the extreme symptoms of a small minority that gave polio a very bad reputation.

We now also suspect some enteroviruses can lead to polio-like outcomes.

 

[Murph]

@alex3619

I'm shocked that today for the first time I'm reading about post polio syndrome.

https://en.wikipedia.org/wiki/Post-polio_syndrome

Seems widely known and respected and at least partially understood. We should be so lucky.

Apparently post polio syndrome can come on decades after the original polio infection. This makes me think about those people who say they had no ME/CFS trigger or a gradual onset. It might have been a virus they didn't even notice, from years before...

 

[alex3619]

It might have been a virus they didn't even notice, from years before...

... or even a bad vaccine batch. Everyone got polio vaccine.

 

[Hip]

I don't think you can explain ME/CFS outbreaks without invoking the dual-factor theory — the theory that ME/CFS is caused by a viral outbreak in combination with a toxin or some similar factor localized to the outbreak area.

If you look at famous outbreaks like the Royal Free Hospital or the Lake Tahoe outbreak, the virus caused a devastating incidence of ME/CFS within those locales. But once the virus spread beyond the locale (which a virus will inevitably do), it apparently lost most of its power to cause ME/CFS.

I don't think you can explain that except by a dual-factor theory.

 

[pattismith]

... or even a bad vaccine batch. Everyone got polio vaccine.

If polio vaccine triggered the disease showing up many years later, there is very little to no chance that it will be recognized as a vaccine reaction.

I am a gradual onset so I am interested in it

 

[alex3619]

If polio vaccine triggered the disease showing up many years later, there is very little to no chance that it will be recognized as a vaccine reaction.

I am more concerned about a bad batch than the vaccine itself. If this were the case, and they bothered to keep records (very unlikely) then it would be theoretically possible to isolate the batch number and match it to CFS or ME onset. Sadly I doubt there is any interest, or records still exist.

 

[alex3619]

I don't think you can explain that except by a dual-factor theory.

What I used to call the two hit hypothesis, or multiple hit hypothesis (since it might not be only two factors).

 

[Murph]

I don't think you can explain ME/CFS outbreaks without invoking the dual-factor theory — the theory that ME/CFS is caused by a viral outbreak in combination with a toxin or some similar factor localized to the outbreak area.

If you look at famous outbreaks like the Royal Free Hospital or the Lake Tahoe outbreak, the virus caused a devastating incidence of ME/CFS within those locals. But once the virus spread beyond the locale (which a virus will inevitably do), it apparently lost most of its power to cause ME/CFS.

I don't think you can explain that except by a dual-factor theory.

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?

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.

 

[pattismith]

on the other hand autism is behaving as a kind of outbreak for twenty years, so focusing on autism causes may provide answers to CFS/ME triggering agents (as far as they may be related)