Is ME as prevalent as they claim?

[pibee]

I am badly trying to reach more people with ME, and unrecognized ME in Croatia (and Serbia, Bosnia and Herzegovina, Monte Negro, ... it is area of almost 20 million people, also Slovenia and Macedonia can understand the language), but without much, if any, success.

In this area there should be at least 20,000 people with ME (if 0.1% the most strict prevalence is taken), and i managed to get 100 people into FB group (and many in that group dont have ME but fibromyalgia without ME.. etc).

I know many dont have FB, many dont know they have it, many think it's some psychiatric disorder, even read 25% of MS cases are actually misdiagnosed ME (according to some unknown Harvard neurologists), but still... there is something missing.

Among those 20,000 (0.1%) to 60,000 (0.3%), there should be at least 10,000+ who cant work. More than half (?) I think dont have mental illness comorbidities which would help them realize they have physical illness (if doctors try to convince them other way).

I would at least expect to get some parents of severe ME teenagers in group...


If we got more real ME cases we could actually make pressure on our hospitals to diagnose this properly. Or at least learn diagnostic criteria...

There are approx 12,000 cases of MS in Croatia, they say... so.. .

Any ideas?

 

[Runner5]

That's interesting. Do you think there is a relative lack of cases in that geographic region (environmental, cultural, dietary reasons possibly?)

I would say where I live in the US it is very common for the chief complaint doctors hear to be fatigue. Maybe if you made your group more of a blanket topic of "extreme tiredness" or fatigue instead of the more specific ME / CFS it might draw in more people? Maybe not - it's an interesting math problem you have there, and one that shouldn't be easily dismissed. It's as important to see who isn't getting CFS as it is to know who is.

 

[pibee]

I definitely dont think there is less ME here, this is why I mentioned MS numbers. And this is why I do math based on most strict criteria 0.1%.

I put in FB title 'fibromyalgia' even though I see that illness very separately but to draw people to the group as fibro is well known and common.

I put title -in Croatian- chronic faitgue syndrome - even though I prefer ME, only to draw people with 'fatigue'.


Well I spoke to, I think Slovakian group admin, took them 4 years to get 350 or so members to the group. So it's COMMON problem, not specific to my geographical location I think.

 

[arboretum]

Well ME is really underdiagnosed. In some countries it seems to hardly be recognized at all, and in those the diagnosis rate would be really low. Croatia might be one of those countries.

 

[Neunistiva]

Hello, I am Croatian. We have a facebook group https://www.facebook.com/groups/mecfsCRO

I don't take much part in it because I'm so severe now, I need help with typing, but that group has 100 members and is fairly active.

Without a biomarker we will never know true percentage of people with ME/CFS, but going by the US, Canadian and UK numbers there should be around 13,000 sufferers in Croatia .

The reason that you can't find ME/CFS patientsin Croatia is because doctors don't know how to diagnose it. This is the case in other countries as well.

In order to get a proper diagnosis you need to be highly educated, know English well enough to read scientific research, and find a doctor willing to read it as well.

The positive thing about Croatian doctors is that 99% of them are really dedicated to helping the patient, the problem is that they have the wrong information.

 

[pibee]

Hey, @Neunistiva . I thought you know I am Petra from that group

I am so sorry about your worsening, I was wondering where are you

I know that they dont diagnose it, but I'd expect more people who are at least severe and moderate, without explanations for their illness, to be online searching for answers.

 

[pibee]

Well ME is really underdiagnosed. In some countries it seems to hardly be recognized at all, and in those the diagnosis rate would be really low. Croatia might be one of those countries.

Exactly.

Except if you're young adult, or even teenager, and you cant get up from bed, suddenly after the flu, you don't need a doctor to tell you, you're sick.
:-/
And if they tell you it's "nothing".. isn't googling next thing you do...when it doesnt go away on its own.


P.S. I'd say in Croatia at least 70% people under 35 know English, so....... :-/

 

[Diwi9]

I'm skeptical about the projected stats too. My experience is that I've never known anyone else with ME (outside of the forums). After my diagnosis, I had one person I knew tell me she has CFS, but has many other diagnoses...so I don't know if the CFS is the full picture...or just another DX slapped on someone dealing with many disorders that include fatigue. I know at least three people who have been diagnosed with Lyme Disease.

MS has been ubiquitous in my life. I have two relatives with MS and know at least six other people with MS.

 

[pibee]

@Diwi9 , exactly, i know a dozen pwMS in personal life. Only ME person I know personally is my mom with extremely mild ME, but I know she has it because it's all like in my case just milder.

Majority of people w MS I know have RRMS form, function, work, have families. So maybe there are pwME like that around....

But numbers simply dont add up



Btw, I was first diagnosed with Lyme, know many others -via forums- who were diagnosed too. Majority dont fit ME symptoms, maybe 1 in 5, or even 1 in 10 has PEM and fits ME better than Lyme.
I fitted both, I responded a lot to antibiotics, and many symptoms were gone - specific ones like Bells palsy, but ME not.

 

[Diwi9]

@Diwi9 , exactly, i know a dozen pwMS in personal life. Only ME person I know personally is my mom with extremely mild ME, but I know she has it because it's all like in my case just milder.

Majority of people w MS I know have RRMS form, function, work, have families. So maybe there are pwME like that around....

But numbers simply dont add up



Btw, I was first diagnosed with Lyme, know many others -via forums- who were diagnosed too. Majority dont fit ME symptoms, maybe 1 in 5, or even 1 in 10 has PEM and fits ME better than Lyme.
I fitted both, I responded a lot to antibiotics, and many symptoms were gone - specific ones like Bells palsy, but ME not.

Once again...we need a biomarker...there is heterogeneity and it seems to confound the situation. I don't know where I fit in diagnostically, but I have PEM, POTS, and cognitive dysfunction...along with weird neurological events...I've experienced temporary remissions. All of the people I know with MS work or are retired in old age...with treatment they got into long-term remission and lesions have disappeared...so the disease appears manageable to some extent with current treatments. However, my cousin has progressive MS. He still works and ambulates on his own, but life is difficult.

 

[Neunistiva]

Hey, @Neunistiva . I thought you know I am Petra from that group

I am so sorry about your worsening, I was wondering where are you

I know that they dont diagnose it, but I'd expect more people who are at least severe and moderate, without explanations for their illness, to be online searching for answers.

Oh, hi I barely notice anything any more. And it's mostly my mother typing for me.

Interestingly, I don't know anyone with MS.

On the other hand several years ago I got contacted by a young person who had similar symptoms as I do, and someone noticed and got us in contact.

That person completely glossed over anything I said about ME/CFS, and insisted we accumulated bad karma in our families and that they are dealing with it and will get better that way. That person had a traumatic experience with a doctor, as do we all, decided never to go back to see a medical professional and was obviously not the type of person to read scientific research.

I think it's not enough to know rudimentary English you learned at school. When I first typed my symptoms into search a decade ago "fatigue, sore throat" there were hundreds of diseases that matched. It took a pretty good understanding of medicine and full two years of telling doctors what to do to eliminate them one by one.

If someone doesn't even understand CBC results, how could they possibly know what they need to do to rule out MS, depression, chronic hep C, and so on and so on.

I had a doctor at Rebro tell me: "If ME/CFS is a real disease, how come you are the only one in the world that has it?" Another doctor told me, "you can't have ME/CFS, you're not depressed." If that's Rebro, imagine doctors in smaller towns and villages. Oh, and I entered both of those doctor's offices with ICC in hand. I already knew what I had.

I have no idea if 13,000 is the correct number, but what I do know for sure is that if one believes doctors, or if one is not apt in reading medical literature and doesn't have complete support of their family like I did, there is no chance they can ever even hear about ME/CFS.

 

[Murph]

Is it possible the measured prevalence in places like the UK and USA doesn't apply in the Balkan region?

I'm a big fan of using Google Trends to look for clues as to how interested people are in different topics across regions. (Google Trends measures interest in a particular search topic or term as a share of all web searches.)

I believe we can use it to detect - at a high level - some geographic differences in the prevalence of MECFS.

Now, the limitations of such an approach are obvious - differences in access to the internet, differences in language (although they do try to control for this across languages, where the translation software can), familiarity with the topic in order to search it, and hidden aspects of Google's algorithms are just some of them.

I wouldn't take this as definitive. Nevertheless you can see a few clear trends:

https://trends.google.com/trends/ex...e syndrome,myalgic encephalomyelitis,/m/0dctd

https://trends.google.com/trends/ex...e syndrome,myalgic encephalomyelitis,/m/0dctd

Interest in a set of MECFS related search terms in Croatia and the whole Balkan region is seemingly very low compared to the rest of the world.

In fact, most eastern Europe and the middle east shows low interest in the condition. The countries with a significant interest in it are mostly northern in latitude, like the Scandinavian ones; or former British colonies (US, Canada, NZ, Australia, South Africa, Kenya). Add to this Japan.

Possibly, it's just a lack of awareness in eastern Europe, but more likely, lack of awareness and lack of prevalence go hand in hand. The reason the UK, USA and Norway are big research hubs is possibly because that's where the condition is most prevalent and best known?

[Just to demonstrate that this way of looking at disease prevalence can yield results, here's the Google Trends search interest in Malaria. The places that show up are in Africa: https://trends.google.com/trends/explore?q=malaria ]

Also, if it is true, then the geographic spread could offer up a clue about the genetic basis for it.

 

[Neunistiva]

I'm a big fan of using Google Trends to look for clues as to how interested people are in different topics across regions. (Google Trends measures interest in a particular search topic or term as a share of all web searches.)

I'm not sure how useful Google Trends is here, because they put the highest number of searches as 100%, but never tell you what the actual number of searches is. So both Croatian search and USA search will reach 100 at some point, even though Croatia has some 80 times smaller population.

Also, look at google trends for Nigeria and they have higher prevalence of ME/CFS than the US.

Is it possible the measured prevalence in places like the UK and USA doesn't apply in the Balkan region?

I think it's possible, but for an illness where 95% of patients are undiagnosed even in the most advanced country in the world, where there is no biomarker, and where there is such stigma and misinformation involved, I really think it's impossible to make any conclusions.

 

[pibee]

@Murph , I dont think we can look who googles 'chronic fatigue syndrome' here, because they dont hear about it so often as in West.
But even in USA, does prevalence seem as statistics show?
Only in USA 1,000,000 people. Global 17,000,000. And PhoenixRising has 23,000 registered members.

 

[Hip]

I'm not sure how useful Google Trends is here, because they put the highest number of searches as 100%, but never tell you what the actual number of searches is.

When I used Google Trends to look at the term "chronic fatigue syndrome" and downloaded the results as a CSV file (from the download arrow button by the map), here are some of the results (note: to get the data for smaller countries, you have to first tick the option "Include low search volume regions" before you download the CSV file):

Norway 100
Australia 74
United Kingdom 49
New Zealand 45
Ireland 30
Netherlands 24
Canada 23
United States 21
Israel 19
Sweden 17
Germany 13
Spain 11
France 8
Croatia 5
Slovenia 5
Italy 4
Macedonia (FYROM) 3
Bosnia & Herzegovina 2
Montenegro 2
Serbia 2

So searches for "chronic fatigue syndrome" in the Balkans area appear quite low, but not that much lower than countries like Spain, France and Italy.


This is what Google Trends says about the data:

Values are calculated on a scale from 0 to 100, where 100 is the location with the most popularity as a fraction of total searches in that location, a value of 50 indicates a location which is half as popular. A value of 0 indicates a location where there was not enough data for this term.

Note: A higher value means a higher proportion of all queries, not a higher absolute query count. So a tiny country where 80% of the queries are for "bananas" will get twice the score of a giant country where only 40% of the queries are for "bananas".

 

[pibee]

The search numbers dont mean so much as CFS is probably 1000x more talked about in the news, in Norway than it's in Croatia. I'd guess checking "i feel tired"; "feeling tired"; would mean more.

Israel with 19, as another Mediterranean country must indicate, imo, that location doesnt matter much w CFS, ... i mean, we're south, we're Mediterranean, but there's much MS here too, so judging by that I'd expect CFS numbers are not so far behind the Northern countries.
:-/


this is google search 'sindrom kroničnog umora' in Croatian, last 5 years.

 

[Hip]

The search numbers dont mean so much as CFS is probably 1000x more talked about in the news, in Norway than it's in Croatia. I'd guess checking "i feel tired"; "feeling tired"; would mean more.

But isn't that what we are talking about here: not the prevalence of ME/CFS, but the awareness of ME/CFS as a medical condition in each country.

If we assume that the prevalence of ME/CFS does not vary much between counties, then the relative number of searches for ME/CFS in each country will likely depend on the awareness. So the above figures would represent the awareness of ME/CFS in each country. And those figures indicate that awareness is quite low in the Balkans region.



If you look at Google Trends for "fatigue (medical)", you get a different set of figures:

Dominica 100
Netherlands 65
United Kingdom 64
Ireland 62
Australia 59
New Zealand 52
Canada 51
France 50
United States 49
Sweden 31
Israel 22
Spain 22
Norway 20
Croatia 20
Slovenia 19
Bosnia & Herzegovina 13
Macedonia (FYROM) 12
Serbia 12
Montenegro 12
Italy 7
Germany 6

 

[pibee]

No. I was not really talking about awareness about CFS in Croatia. There is ZERO, i know this already because only last 6 months was in news few times, but always misinformation.
Only show on CFS i've seen 6 months ago was about "housewives needing to find time for themselves" lol, this was show about CFS, but they again tried to portray it lightly even though we (patients) even set up Ron Davis to speak on the show but our show, very patriotic, decided for now only local doctors.
And local doctor said okay things like 'it's autoimmune now they think' but in reality there is no diagnostics unless you diagnose yourself first before coming to the hospital


Anyway, I was just saying that I personally tried to gather ME/CFS people online, and with all my efforts the group has 100 patients now.
I just go by assumptions that rapid onset moderate/severe ME people will realize they have it themselves, I can not imagine they wouldnt. It's not that hard.

All in all, for now it seems the prevalence is lower than is estimated.

 

[Hip]

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?

 

[Wishful]

It took me about 15 years to realize that I had ME. Before that, I thought it was some incredibly rare form of chronic neuroinflammation. I looked at ME/CFS pages once in a while, but I thought I only had two of the markers. That was because the American criteria was confusing. When I finally thought to check for Canadian or international criteria, I found that I did have ME.

Some places might have cultural aversion to admitting fatigue or illness, which could deter people from admitting it even to themselves. If when you tell someone that you feel too ill to work, their response is that you're just lazy, that would make you not want to talk about it. There could be all sorts of reasons why one region doesn't report ME/CFS the way that others do. Better public information is needed--beyond 'housewives needing time to themselves'.