Any recent ME/CFS outbreaks?

[Archie]

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)

And vaccines . They really do love us sooo much .

 

[JES]

And vaccines . They really do love us sooo much .

 

[marlunette]

Well if you had a block containing say 5,000 people, since the general prevalence of ME/CFS is normally quoted at 0.2%, then you might expect 0.2% x 5,000 = 10 people to have ME/CFS in that block.

If you had more than that, say 20 people with ME/CFS in this block, and you want to calculate the odds of that happening just by chance, I think you would need to use the formulas from a branch of mathematics called "permutations and combinations" to find your answer. I don't think it would be a difficult calculation, but I find anything mathematical hard going with brain fog.

Mapping could help everyone figure out what they mean by block. I usually think of my block as just the houses and buildings that face the street I live on between the two nearest cross streets. There are 14 houses on my block, so probably less than 50 residents. If one of them had ME/CFS it would seem like a big coincidence!

But like debored13 pointed out we can be fooled by randomness. There are going to be blocks that have way more people with ME/CFS than average if there is a random distribution. I still think mapping would be valuable. I wonder why OMF doesn't see it as a priority? I wonder if they would be open to working with volunteers that are interested in helping with the project?

 

[taniaaust1]

Also at the eMErge meeting, I talked to Cathie Powell, MPH, CEO of an Adelaide group called Bridges and Pathways, which aims to help patients and caregivers dealing with ME. She says they still see outbreaks of ME/CFS in Adelaide, but they are smaller. She sees clusters from individual high schools - perhaps 5-12 new ME/CFS patients at a time. This came up because, in making my point about epidemics and common mutations, I used the example of the famous 1949 Adelaide epidemic of ME/CFS, which was, at the time, called atypical polio and might today be called post-poliovirus fatigue.

That is interesting. I live in Adelaide. I'd like to say though that Cathy Powell she does not usually help those who have ME/CFS by doing any individual advocating (I got refered to her a couple of times due to being told she helps patients). I tried to seek help from her in the past and was told they are there to help in educating professionals (but those professionals need to seek them out) and that keeps them busy.

 

[taniaaust1]

As far as outbreaks that involve the same pathogen going around and disabling a group of people, I don’t think we have that incredibly common anymore. As far as geographical clusters?? I noted w interest that Ron said he found out there were a few severe ME patients on his same block, when they started doing the study. Perhaps that’s explainable by chance, I’m not great w math. But I found it interesting.

I agree that one often does not even know others who do have ME/CFS close by so would we really know if there was a bit of an outbreak going on in our area.

I had a neighbour (well the block next to mine) who I always thought his issue was a mental health issue, I knew he was on disability and assumed it was that as I had not noticed anything physically obvious on the times I saw him. I never talked about my ME to him and he did not talk to me about his issue so we both did not know about each other (though I was extremely ill with ME at the time).

I only found out it was ME/CFS he had when my dad who was a good friend of this person started complaining that he could not even visit him any more as he was always in bed and too tired to see him and then told me that the hospital kept on kicking him out telling him there was nothing wrong and started telling me other issues this other was having.

Anyway that guy who Im positive had ME never did get diagnosed as NONE of the doctors in our town ever diagnosed ME/CFS... anyone with this they would label as having depression. I had to seek diagnoses OUTSIDE OF OUR TOWN due to this and stopped going to the local doctors as they still would not believe this illness exists. In the last year or two of his life he finally got a Fibromyalgia diagnoses but yeah it certainly was not just that.

This poor guy ended up dying.. only not long after the local hospital threw him out again telling him he was not actually not sick and that it was just in his head (He died of organ failure).

My father at one point when he was in hospital (before they threw him out again) was taking food to him as the hospital would just send his dinner out and he'd be asleep (he was sleeping tons) and he'd then wake to find out they'd sent his food in but as he had not awoke so had not eaten it, they'd thrown it out on him.

I'm quite sure if there had been an outbreak in my town that it would not have been known about as everyone after going to their doctor and being told they were depressed, like me would have travelled to the city or the surrounding towns to try to get a diagnoses elsewhere and not gone back to our awful doctors. (there was one poor person who had had ME for 30 years there and could not get a doctor at all so no longer saw doctors).

 

[Murph]

It is extremely easy to get fooled by randomness. For example, @marlunette says it would be a big coincidence if there was another person with me/cfs on their block, among 50 residents. Actually, it would only be a small coincidence. With an incidence of about one in 200 (0.5%), approximately 1 in 4 people with me/cfs will have another me/cfs person among their 50 closest neighbours.

Our intuitions are really bad at probability. A great example is the birthday paradox. If you put 23 people in a room, there's a 50-50 chance of two of them sharing a birthday.

https://betterexplained.com/articles/understanding-the-birthday-paradox/

The only way to really be confident about geographical clusters is with really big sample sizes. That said, I like the mapping idea and I've spent quite a bit of time on Google trends looking at where me/cfs is most searched for (UK/Norway, two culturally very different places that are very geographically close, I can't help thinking there's a clue there).

 

[marlunette]

Hey @Murph - You are right! I was fooled by randomness in my hypothetical. I think with a large scale mapping effort we'd be able to get a better sense of what is going on but it doesn't seem likely at this point.

 

[frozenborderline]

Well if you had a block containing say 5,000 people, since the general prevalence of ME/CFS is normally quoted at 0.2%, then you might expect 0.2% x 5,000 = 10 people to have ME/CFS in that block.

If you had more than that, say 20 people with ME/CFS in this block, and you want to calculate the odds of that happening just by chance, I think you would need to use the formulas from a branch of mathematics called "permutations and combinations" to find your answer. I don't think it would be a difficult calculation, but I find anything mathematical hard going with brain
fog.

I find math hard w severe brain fog too, but there are estimates that might be possible.

Okay, so I hadn’t thought that it would be likely for a block to contain 5000 people. I was thinking more like 100 max. But as a high estimate more like 500. It seems like then the prevalence should be around 1 or less people with ME on a block, on the high end. If we looked at severe ME, it would probably be even more unlikely , correct? And I still think these might be high wstimates for people on a block, but maybe Ron was exaggerating about there being four people all on the same exact block. Maybe he meant around the block, .or just in the same neighborhood.

 

[frozenborderline]

The only way to really be confident about geographical clusters is with really big sample sizes. That said, I like the mapping idea and I've spent quite a bit of time on Google trends looking at where me/cfs is most searched for (UK/Norway, two culturally very different places that are very geographically close, I can't help thinking there's a clue there).

I do think there’s a clue there. But I think it’s not extremely simple. Norway and the uk share being damp and dark climes, but if there’s an idea that the biome of an area becomes problematic when molds interact with industrial pollution (see my recent thread on nanoparticles) and not simply “ordinary” forest molds in the wild, then dampness *alone* wouldn’t make the air problematic -eg im sure the amazon rainforest is amazing, but we might expect dampness and darkness plus dense civilization to make the air problematic. It seems like one of the reasons the American west seems to be so much better for many isn’t just dryness but there being untouched wilderness and greater distances between people and buildings and cities

 

[frozenborderline]

Does anyone know how many people are in an average block in Palo Alto that Ron Davis was referring to. It would make calculating the odds easier

 

[frozenborderline]

We do know how frequently it occurs in the general population, as a result of various studies which have estimated the prevalence. 0.2% is the normally quoted prevalence.

I did some calculations based on the approximate amounts of houses per block in suburban Palo Alto residential neighborhoods, accounting for around 3 people per household, 6-8 houses per block. But then i assumed that Ron may have meant not literally his block but adjacent blocks , and so i made conservative estimates and a range.

I got a range of 22percent incidence to 5 percent incidence (the latter very conservative, involving rounding up and assuming four blocks and eight houses per block).

Now, five percent incidence in one case doesn't sound astoundingly different from the estimates that range from .2%-1% general population. But 22% would be. And also one has to consider that the incidence of severe ME (eg bedbound patients) is probably less than a quarter of rhe incidence of ME/CFS in general.

I can't know exactly what blocks and numbers ron was talking avout without him unethically disclosing patient info. But I can make estimates. I would propose that we not assume there arent still outbreaks and instead assume that maybe people talk to their next door neighbors less. On my dirt road block in Vermont that had five or six houses, another person came down wirh severe ME around the same time i did and I never learned about it except for by social media years later.

 

[frozenborderline]

On my "block" in my small town in Vermont, there were two moderate-severe ME patients out of 22 people. That gives us an incidence of 9%. Compared to somehwere between .25% and .05% (i divided the different estimates of incidence by 4 to account for fitting into the 25% of patients that are housebound or bedridden). A "block" might not be a good unit of measurement but I also don't know any neighbors beyond that area enough to confidently estimate incidence. And patients in this area (rural, poor, no specialists) are bound to be underdiagnosed so estimating based on these two cases in the entire town wouldn't work well. (this block is about a mile long, for reference).

And if we look at clusters of related disorders like mcas, eds, pots , etc we may get different numbers. My sister, who lived in our same house, has strong signs of mcas and mild cfs but hasn't been evaluated.

 

[Art Vandelay]

This may have been mentioned above. Some CFS doctors here have said they see some evidence of epidemics. The patients are often classmates at high school who all come down with the same illness during exams for example.

The problem is that these patients will all see different doctors even if they live in a similar location, so it's very difficult for one doctor to get an overall picture of the 'epidemic'.

There's more on this I believe in Dr Mark Donohoe's talk at the Emerge conference earlier this year.

 

[anni66]

I didn't explain myself very well – what I meant was the pressure to keep on working, even though they were ill themselves with an ME-associated pathogen. Many current patients feel that not stopping to rest soon enough, and for long enough, was a factor in their own (endemic) cases; if acute lack of rest was teamed with a particularly risky infectious trigger, it may go some way to explaining the outbreaks.

I've only read up the Royal Free outbreak in any detail, but a high proportion of those who became sick were female nurses and auxiliaries. Many of them would have had caring responsibilities in addition to their jobs, putting even greater pressure on them to keep working despite being ill. The women presumably took the infectious trigger home to husbands, children and friends; but if they were not under the same physical and psychological stress from nursing people with a potentially deadly disease, it might explain why they didn't also develop ME.

However – to undermine my own case – it's reported that at least some of those 1955 epidemic patients developed brain or spinal lesions that are not unusually seen in endemic ME. It may be a different disease, in the same way that GWI appears similar but is nevertheless distinct.

In 1950s UK unmarried nurses ( especially if still training) stayed in nurses accommodation , usually at/ near hospital, which may have similar environmenral triggers/ acted as a secondary incubator.

How many of the affected nurses lived in nurses accommodation.

 

[frozenborderline]

This map doesnt have nearly enough inputs but may be an interesting start in terms of a subjective study mapping how people wirh enviromental sensitivies feel in a given area.


https://paradigmchange.me/rate-locations/
There are lists and a map. I recommend looking at the map and zooming in on the bay area, for a start.

 

[frozenborderline]

I did some calculations based on the approximate amounts of houses per block in suburban Palo Alto residential neighborhoods, accounting for around 3 people per household, 6-8 houses per block. But then i assumed that Ron may have meant not literally his block but adjacent blocks , and so i made conservative estimates and a range.

I got a range of 22percent incidence to 5 percent incidence (the latter very conservative, involving rounding up and assuming four blocks and eight houses per block).

Now, five percent incidence in one case doesn't sound astoundingly different from the estimates that range from .2%-1% general population. But 22% would be. And also one has to consider that the incidence of severe ME (eg bedbound patients) is probably less than a quarter of rhe incidence of ME/CFS in general.

I can't know exactly what blocks and numbers ron was talking avout without him unethically disclosing patient info. But I can make estimates. I would propose that we not assume there arent still outbreaks and instead assume that maybe people talk to their next door neighbors less. On my dirt road block in Vermont that had five or six houses, another person came down wirh severe ME around the same time i did and I never learned about it except for by social media years later.

so the range in general pop for SEVERE ME--not just ME/CFS in general ...would be more like between .07 and .25 percent---even the most conservative estimate shows that rons neighborhood has 20 x the concentration of CFS of the general country population. 20 times the general population as the most conservative estimate, but possible way over 100 x the general population!! i think we have a pattern worth looking at here

 

[roller]

perhaps one should consider, if there is a "high range of mecfs patients" in a (street) block/area, that this is due to some "medical care cluster"... that ppl in this area just get diagnosed more frequently with mecfs... a "doctor cluster"

 

[Rufous McKinney]

hat ppl in this area just get diagnosed more frequently with mecfs... a "doctor cluster"

That would be a huge component of any effort to tease out these types of issues. This is not randomly distributed.

We still have a high percentage of patients lacking diagnosis. In my case, i live in a small town and my doctor happened to (non randomly) be into ME CFS enough to be aware we have Stanford, LDN, and Provigil. (the latter I did not end up using). No other doctors, I saw several, had any such knowledge.

So he diagnosed me with SEID. He doesn't use the term ME. He has several patients. If those same patients were seeing the other doctors across the parking lot, they would not have the diagnosis.

How was this Palo Alto cluster diagnosed?

The most common outcome of ever mentioning this to others is being told- Oh yeah I had that. It went away.

Well, I"d suggest you had something else. Not what I have.

 

[xebex]

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.

This is fascinating! I have always believed that it’s not caused by one thing and it can’t really be a true “outbreak” because how would that explain individual randoms getting it and no one else around them.

I have yet to find my dual triggers but I actually think I had a entire entourage of them all going at once!

Anyway wouldn’t long covid be considered the latest “outbreak”? I wonder if it’s concentrated in any specific areas.

 

[Hip]

Anyway wouldn’t long covid be considered the latest “outbreak”? I wonder if it’s concentrated in any specific areas.

If you look at the list of historical outbreaks of ME/CFS-like illnesses, you find in some cases the outbreak was very localized (to a building, institution or village), but other cases the outbreak was more widespread, across a city or region.

In the case of very localized outbreaks, this is where I think a local environmental factor present in the building (such as toxic mold in the building) may have been behind the outbreaks, along with the virus, in a dual-factor etiology.

But in wider ME/CFS outbreaks across a city or region, it's unlikely there is an environmental factor present in the whole region, so these type of outbreaks may just occur when a new strain of virus hits a town or region. But of course for each person who develops ME/CFS from this new stain of virus, a dual-factor etiology may be at play: they may have developed ME/CFS from the virus because their immune system was compromised from mold, major chronic stress, or other factors.

For the ME/CFS-type long COVID cases that are appearing everywhere, this may be an example of the latter case: where a new virus hits town.


Note that long COVID is thought to consist of a number of different illnesses, one of which is post-viral fatigue — and that's the one which might become ME/CFS in some people, if the PVF does not clear up after a year or so. But at the moment, it is too early to say for sure whether coronavirus can trigger ME/CFS, because we will only know that after a few years, if the long COVID patients with PVF never recover.