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Is ME as prevalent as they claim?

pibee

Senior Member
Messages
304
I don't know much about the way of life in the Balkans, but could it be that the incidence or severity of such stressful events is lower in the Balkans, perhaps due to factors like better family life and social support networks? And so in turn, there might be less incidence of ME/CFS in the Balkans?

I think recently heard divorce rate is about 25%, which is less than USA with i think 50%.
However, stress here is definitely higher than West, because of economic / poverty reasons, few years ago, not sure if still true, young adult unemployment rate was 50% (so people under 30 years).

Almost majority people in their 20ies and 30ies, if not married, still live with parents. My cousin is 39 and lives with parents. My sister is soon 34, works as MD and lives with mom and me! It is common here because of bad salaries.

Also war in 90ies, caused much stress, that generation should def have more CFS by that criteria...

People lleave country a lot due to unemployment, last years 200,000 people moved to Germany (considering size of Croatia less than 4,5 mill people this is huge).
Bosnia and Serbia has even much worse situation with more stress and 2x less salaries than Croatia.
so def stress can only contribute to numbers.

Protective factors could be: more Mediterranean food (although big parts of Croatia, Serbia and Bosnia are not Mediterranean), only part of Croatia (half) has Mediterranean food.
Less divorces. More sun than North.


But that's it.
 
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Hip

Senior Member
Messages
17,824
@pibee, in terms of raising awareness of ME/CFS in Croatia, you might consider writing an explanatory article on ME/CFS and its symptoms, so that when people search for "fatigue" (in Croatian), they might find your article.

You could write the article on a free Google Sites website.

If you search engine optimize (SEO) the text of your article for the word "fatigue" (which involves placing the word "fatigue" in nearly every sentence), then when people search for fatigue (in Croatian), they may find your article.
 

perrier

Senior Member
Messages
1,254
ME/CFS has been associated with the occurrence of very stressful events (eg: divorce, bereavement, loss of job, financial troubles) in the year prior to ME/CFS onset. This seems plausible, since stress can weaken the Th1 antiviral immune response, and so may make you more vulnerable to any viral infection you were unlucky enough to catch during that stressful period in your life.

I don't know much about the way of life in the Balkans, but could it be that the incidence or severity of such stressful events is lower in the Balkans, perhaps due to factors like better family life and social support networks? And so in turn, there might be less incidence of ME/CFS in the Balkans?
Hello Hip
I've always been very interested in the first point you make. And I have heard it many times.

My parents and extended family all went through the horrors of World War 2, and not all survived, but those who did, were exceptionally strong physically and emotionally, even though I think they had PTSD, and lived into very old age. Yet, we don't see that much ME in that war time generation. Of course, their value system was different from what we have now. But still...

What do you think? Maybe it has something to do with the environment?
 

Hip

Senior Member
Messages
17,824
My parents and extended family all went through the horrors of World War 2, and not all survived, but those who did, were exceptionally strong physically and emotionally, even though I think they had PTSD, and lived into very old age. Yet, we don't see that much ME in that war time generation.

I am not sure we can reliably say that there was not much ME/CFS in war time; there probably is not any good data on that.



But the interesting thing about the WW2 generation in the UK at least, is that a kind of natural socialism appeared, with everyone feeling that they were in the same situation together, everyone believing in the same thing, and everyone helping each other out. That type of close cooperative community and natural socialism may have played a role in buffering the stress, because individual stresses can be easily shared with other people who understand your circumstances.

You also often find these natural socialist values appearing in poor countries or poor communities, as they face the hardships together.

Those values are really the opposite of today's liberal and capitalist values and the "me, me, me" generation, in which people tend to be individualistic, have their own self-created individual beliefs and way of life which may isolate them from others, and in which everyone seems to be in a one-upmanship race or rat race in the competitive and materialistic urban environment. Since in such environments everyone tends to look out more for themselves, when any individual is hit by a major stress, there may be almost no one to share it with, since they may find that nobody else really cares. The stress may then be concentrated in their own mind, rather than dissipated by sharing the troubles with a cooperative community.
 
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pibee

Senior Member
Messages
304
I am definitely the sickest person ever in my whole family, both sides, mom, dad, their siblings and their kids.... I am also the youngest among all cousins.

I do think I might have been born with Lyme because I had very clear PANS/PANDAS symptoms as 3 year old and never was really healthy.

What else to think than that each new generation is more sick.
 

Murph

:)
Messages
1,799
All in all, for now it seems the prevalence is lower than is estimated.

I think this is a fair conclusion. 1. Assumption that prevalence is the same in all countries seems like a bad assumption, so we should be open to evidence, And the evidence is 2. Your group is not growing rapidly, plus 3. low search interest in fatigue related search terms.

(fwiw, google searches these days are probably a leading indicator of interest in something. You can do them very privately. It's not like going to the doctor or announcing to your family that you are always tired. cultural pressure against admitting you're tired shouldn't be a huge impediment to a google search.)
 

pibee

Senior Member
Messages
304
@Murph , you mean, it's NOT fair conclusion?

or it is IN CROATIA?

I am guessing the prevalence of ME is overestimated everywhere. As stated, this forum has also only 23,000 registered - while there is 17 million estimate in whole world. Of course -registering on forum vs just lurking, there is many other factors.

Problem with Google Search for "fatigue" is that translation to other languages, probably by 'google translate', is sometimes off.
I tried "I feel fatigue" and it turned out it's searched only in UK and some other countries, and most others had 0.
this means "I feel fatigue" is not translated properly by GT?

I dont use Google Trends much, though. Will research this further these days.


As I've told you I spoke to Slovakian FB group admin and they have the same problem. Their group is 4 yrs older than mine and they only got to 350 people. My group is getting approx 10 new persons each week currently, so in 1 year should be 500.
But I dont even read in news, or on forums, or hear.. about rapid ME onset cases. While you keep hearing MS cases.

No reason MS is prevalent in Croatia, as much as in the West/North, while ME isnt, either.
They keep mentioning how much MS cases, and autism cases have exploded last years /decades.
I heard really many reports about autism in Croatia has increased a lot last 10-20 yrs. Same like they report on West (?)

-Can someone share how much biggest UK groups, for example, or California ME group if that exists on FB, have members?
 
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Murph

:)
Messages
1,799
I am guessing the prevalence of ME is overestimated everywhere.

If the prevalence estimates come from the countries where the disease is best understood/most prevalent (USA, Norway, UK) then this will be the effect. Most countries will have lower prevalence than that, would be my guess.

Problem with Google Search for "fatigue" is that translation to other languages, probably by 'google translate', is sometimes off.
I tried "I feel fatigue" and it turned out it's searched only in UK and some other countries, and most others had 0.
this means "I feel fatigue" is not translated properly by GT?

Google can give you results for "search terms" and "search topics." If you use english language search terms it strongly favours english language countries, because it is literally just looking for that string of characters.

For "Search topics" Google Trends uses translation and you get a wider set of results, but the results depend on how they define what searches are relevant to a topic, and also on translations.

Here's fatigue as a search term (highest in France, where "fatigué is the everyday word for tired)

Here's fatigue as a search topic. (highest in uk)
 

perrier

Senior Member
Messages
1,254
I am not sure we can reliably say that there was not much ME/CFS in war time; there probably is not any good data on that.



But the interesting thing about the WW2 generation in the UK at least, is that a kind of natural socialism appeared, with everyone feeling that they were in the same situation together, everyone believing in the same thing, and everyone helping each other out. That type of close cooperative community and natural socialism may have played a role in buffering the stress, because individual stresses can be easily shared with other people who understand your circumstances.

You also often find these natural socialist values appearing in poor countries or poor communities, as they face the hardships together.

Those values are really the opposite of today's liberal and capitalist values and the "me, me, me" generation, in which people tend to be individualistic, have their own self-created individual beliefs and way of life which may isolate them from others, and in which everyone seems to be in a one-upmanship race or rat race in the competitive and materialistic urban environment. Since in such environments everyone tends to look out more for themselves, when any individual is hit by a major stress, there may be almost no one to share it with, since they may find that nobody else really cares. The stress may then be concentrated in their own mind, rather than dissipated by sharing the troubles with a cooperative community.
Yes, I think you have really pointed to something when you call it natural socialism. It was that, indeed. Our culture now is all about 'me' and it also very permissive, and highly selfish. I really appreciate your point about the stress now being concentrated rather than dissipated.

And to tell the truth, I remember that the "natural socialism" even continued after the war, to a large extent. Folks got together and some times told stories of the war, and that too helped with the ptsd.

My parents had tons of friends and I never once heard of ME. There was one lady who had MS. I do ask around as much as I can about ME in that older generation, in various communities, and I'm not coming up with too much, except in the younger generation as it were.

But I will stop, as I may off topic. Thanks for your insights. I will think on them more.
 

pibee

Senior Member
Messages
304
Thanks for google topics vs terms explanation! very helpful!

Judging by that Trinidad and Tobago (76) have very high search for 'fatigue' - much higher than Norway (26) or Belgium (60), so... I wouldnt rely that the illness is more prevalent where it is more recognized.

If the prevalence estimates come from the countries where the disease is best understood/most prevalent (USA, Norway, UK) then this will be the effect. Most countries will have lower prevalence than that, would be my guess.

Okay, Norway had an epidemic, USA too.
UK ? Not sure.

I thought it's more recognized there because USA is for starters 60x bigger than Croatia and has one of the most advanced medicine and research centers/universities in world.

Best understood doesnt mean also most prevalent, it's best understood because of the advanced medical care and academia in USA.

For example in whole Croatia there is only 1 MRI 3 T, while I heard from a friend in Florida that only around his town in circle of 100 miles each hospital has 3 T MRI.
it's just more rich country with better hospitals.




USA should have according to strict 0.1% prevalence, at least 100,000 severe ME cases.
I just dont see that either.
 

Hip

Senior Member
Messages
17,824
My parents had tons of friends and I never once heard of ME.

There was a reported 5 to 8-fold increase in ME/CFS incidence in the 1980s (see this thread), which is a massive increase. No one knows why that large increase occurred, but I speculated it might have been due to the introduction of the poliovirus vaccine two decades earlier.
 
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perrier

Senior Member
Messages
1,254
There was a reported 5 to 8-fold increase in ME/CFS incidence in the 1980s (see this thread), which is a massive increase. No one knows why that large increase occurred, but I speculated it might have been due to the introduction of the poliovirus vaccine.
It's a very interesting read, and an interesting thesis. Thanks. I recall very well the terror of polio, and I recall seeing youngsters with braces on their legs. I also knew of people who seemed to have recovered from polio. In fact, if memory serves me, Paul Martin, who was PM of Canada, had polio and recovered.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
It's a very interesting read, and an interesting thesis. Thanks. I recall very well the terror of polio, and I recall seeing youngsters with braces on their legs. I also knew of people who seemed to have recovered from polio. In fact, if memory serves me, Paul Martin, who was PM of Canada, had polio and recovered.

A bit of topic but the talk of world war 2 and polio reminds me, there was never much generations of people in western civilization that did not deal with wide spread endemic diseases, at one point or the others.

The plague of the middle ages, viruses introduced to the United States from European settlers which killed a lot of the American Indian tribes, turbuculous, Polio, god forbid you had a mental condition and ended up getting a lobotomy for it. Or ended up in a room with padded walls. All things considered we have come some way in terms of human ethics and understanding, along with science and technology.