pibee
Senior Member
- Messages
- 304
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?
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?
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