CROATIA
15.09.21
I interviewed Ivan and J about what life was like for them living with M.E in Croatia.
J - I had the most ordinary day: I went to my University classes, in the evening I went to the usual Martial Arts class I took three times a week, and I went to bed feeling fine. Next day I woke up ill. I had a sore throat, low-grade fever, and was so weak I could hardly sit up in bed. I didn't think much of it at the time. I was 22 and getting a sore throat in the winter and being unable to leave the bed has been a regular occurrence for me ever since my childhood. Each time I would recover completely. Until I didn't
J - It hasn't for me, but it has for the doctors, ha ha :) After about 3 weeks I was fed up with being ill and very unhappy about missing so many classes at the University, so I started Googling my symptoms. At the time the only medical test I had was a nose and throat swab and both came back negative. I was looking for diseases that can cause sterile sore throat, profound tiredness, sleep disturbances, joint and muscle aches, tachycardia and tachypnea, and so on, and the only one that fit 100% and didn't leave any symptoms out was ME/CFS. In short, I correctly diagnosed myself after a bit more than 3 weeks. I told my GP I suspected ME/CFS but she said I couldn't possibly have it because I'm too cheerful and positive. I didn't really understand what that had to do with having or not having ME/CFS. I wasn't yet familiar with horrible prejudices sufferers face. But I was more than happy to take her at her word because I really didn't want to have one of the most disabling lifelong incurable diseases.
Each visit to the specialist was rekindling of hope that one of them would know what was wrong and fix it. I didn't mention ME/CFS to any of them. GP said I didn't have it, and besides I didn't want to influence their thought process and lead them down the wrong path. Doctors did their job thoroughly and eliminated many diseases, but many of them were extremely cruel and insulting. When you have your life stopped by a disease and you enter a doctor's office you are laying all your hopes on them. You are suffering and they have the power to test you or not, to treat you or not, to stop your suffering or increase it. When you're so open and vulnerable cruel words and judgement cut the deepest. By the time 4 years had passed, I still didn't have a diagnosis. I took ME/CFS International Consensus Criteria, found the author who was geographically closest to me and went there. I was already too ill to handle car travel but we had no choice. My parents drove me. We drove no longer than 3 hours each day and I was lying down on the back seat with ear-plugs and eye cover. My disease increased in severity just from that one trip so much that I don't know if it was worth it.
But I finally got officially diagnosed with ME/CFS by an expert, more than 4 years after I first suspected it.
J - This is not really a disease that affects your life, this is a disease that completely and utterly destroys your life.
It takes away your humanity step by step. You start to lose people, experiences, achievements one by one. I have lost my degree, my career, my boyfriend, family, friends, vacations, open sky, moonlight, movies, YouTube, shopping, books, music, conversations, nature, rain, ability to eat 99% of food, showers, walking, sitting upright, going to the toilet, wiping my butt,...
Since the research funding is almost nonexistent there are no approved treatments. I've tried many experimental medication suggested by doctors, or supplements I read about online, exercise, physiotherapy... Some did absolutely nothing, and the rest made me worse. It also takes so much emotional and mental energy to decide which of the thousands of the untested therapies I am going to risk it with next, and if I should at all.
In the first few years of my illness my parents and I had to learn how to read medical research. We would spend hours discussing symptoms and therapies. We went to what feels like every doctor in the country hoping to get a diagnosis. We spent so much time in hospitals and doctor's offices. Everything we humans do requires energy and concentration, which I don't have. Even activities that are considered resting when you are healthy, such as watching TV or playing a game were utterly exhausting for me. Now they became impossible. I am bedridden and haven't left my bedroom for years.
J - They are called "Udruga za oboljele od mijalgičkog encefalomijelitisa, disautonomije i fibromialgije". They help patients and their families get in touch with other sufferers, educate patients about ME/CFS, inform the public and media about our disease and problems we face, connect with ME/CFS associations in other countries...
J - In Croatia? Not as far as I know. I've seen and spoken about it with many doctors, in different cities. I even mailed some concise medical literature about ME/CFS to those who were most misinformed but they ignored it. However, I don't really get to have doctor's appointments any more. Ironically, the worse your health is the less accessible the medical system is. I am bedridden and most specialists are not interested in doing home visits, almost all medical devices are too large to be brought into my bedroom, and until recently my whole town didn't even have a single mobile ultrasound. Being carried to a hospital takes a huge toll on my health, so there's always the question: is this serious enough to risk permanent deterioration? In short, an interested doctor might have appeared in the last few years and I wouldn't know about it.
J - A lot of doctors are completely uninformed. With this disease, that's a good thing because they are usually the most open to reading new research and findings, while those who think they know it well are, in fact, just shockingly misinformed. A lot of them start mentioning psychiatrists as soon as the word "fatigue" is used.
Psychiatry is not a waste basket where they can conveniently get rid of the patients they don't know how to treat. It doesn't matter which branch of medicine a diagnosis belongs in as long as it's the correct one. Specialists very easily accept negative lab test results even when they know the test is not highly sensitive, but won't accept that there are no mental health issues when a negative comes back from a psychiatrist or psychologist.
I have seen several psychiatrists as a part of the diagnostic process, in addition to doing a psychological and neuropsychological testing. Psychiatrists I saw agree with me about this issue, and I actually had very pleasant experiences with them.
Because of this, I learned that describing my symptoms without using the word "fatigue" is a lot more effective. Now I know the difference between "Doctor, I'm always tired," and "Doctor, I have cognitive difficulties, sensory hypersensitivity, I can't concentrate, my body can't regulate temperature, I get tachycardia when I sit up, my legs turn purple, I have day-and night reversal, unrefreshing sleep...."
It was actually educational because what I thought was fatigue were many different issues. For example, I thought I get tired when standing up just because my body doesn't produce enough energy but a much bigger problem was Postural orthostatic tachycardia syndrome (POTS) with tachycardia, tachypnea, blood pooling, myoclonus etc. POTS is a common comorbidity in ME/CFS but when I first got ME/CFS, more than a decade ago, I didn't even know it existed. Now I know.
J - From doctors, absolutely not. Most visits to doctors have done nothing but left me sicker from effort to get there, to speak to them and describe my symptoms, and the many unpleasant exams and tests. Their prejudice and harsh words also took their toll. Especially in the beginning. I was young, didn't know how to stand up for myself, or how to recognize a doctor willing to follow the newest medical advances. Now I do have adequate support, but it took more specialist than I am willing to count. Still, it was something that had to be done. As for disability benefits, scandalously ME/CFS doesn't fulfill any official category for disability, but once you're severe enough and completely unable to take care of yourself, it is possible, no matter which disease one has.
J - I've never gotten any treatment for ME/CFS proposed by a doctor in Croatia. Lack of research into treatments for ME/CFS, just like the lack of research into any aspect of ME/CFS, means that there are no scientifically backed treatments. That is the shame the whole humanity carries. I want medical professionals to be reminded of that every time they meet an ME/CFS sufferer. However, that doesn't mean there's nothing they can do to help. They must help. Proper diagnosis and acknowledgment of symptoms is helpful. And, despite not being able to treat ME/CFS directly, some symptoms can be eased, and various deficiencies that arise from having such a severe chronic illness should be monitored and addressed. For example, it was by pure luck that I read a meta-analysis on vitamin D supplementation and learned one can't get enough of it just from food. I had to ask a specialist to order a blood test, and sure enough my vitamin D levels were dangerously low. I shouldn't have had to be the one who discovers that on my own when I'm supposedly being followed by a GP and several specialists who know full well I am bedridden and spend all the time in a darkened room. I also shouldn't be the one who has to read scientific research when I have no medical training and can barely read more than a few lines a day.
Which you know well, since it took me more than a year to answer these questions for you :)
Ivan - In Croatia as well as in the world, more and more people started talking and showing interest in CFS / ME after the COVID-19 pandemic, because the symptoms in a large number of people after suffering from COVID-19 are identical to CFS / ME. I think that due to this fact it could be better for everyone with CFS / ME in the future because there is much more attention and interest from the whole world, and thus a larger number of doctors in Croatia for this disease.
J - I think we share our future with the rest of the ME/CFS sufferers in the world. Croatia is too small to do anything on our own, but we are a part of the EU, and even if treatment or cure were found outside of the EU (which is the most likely considering the even bigger lack of research here) I am sure it would eventually reach us. I have been in contact with OMF and Stanford laboratory, and even sent a hair sample, so I really feel connected and that we are all in this together.
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Intervjuirao sam Ivana i J o tome kako izgleda njihov život s ME u Hrvatskoj.
Ivan - Sve je počelo krajem kolovoza 2017. nakon jednog teškog biciklističkog treninga kada sam imao 43 godine. Cijeli život profesionalno sam napredovao u sportu prvo kao sportaš, a kasnije i kao trener. Sljedeći dan dobio sam visoku temperaturu i sinusitis (upalu sinusa). Kako sam tada bio izbornik hrvatske triatlonske reprezentacije, morao sam tako bolestan odvesti sportaše na utrku u Rumunjsku jer me nije imao tko zamijeniti, a to mi je dodatno iscrpilo tijelo. Kad sam se vratio s utrke, umor se znatno povećao, kao i bol u mišićima i zglobovima, bilo je to stanje slično gripi, koje traje sve do danas.
J - Bio je to najobičniji dan: bila sam na predavanju na fakultetu, navečer sam bila na tečaju borilačkih vještina koji sam pohađala tri puta tjedno i otišla sam spavati osjećajući se dobro. Sutradan sam se probudila bolesna. Imala sam upaljeno grlo, blagu temperaturu i bila sam toliko slaba da sam se jedva mogla posjesti u krevetu. Tada nisam puno razmišljala o tome. Imala sam 22 godine, a to da imam upaljeno grlo zimi i da ne mogu iz kreveta za mene nije bilo ništa neobično još od djetinjstva. Svaki puta bih se potpuno oporavila. Sve dok jednom nisam.
Ivan - Čak i nakon nešto više od 4 godine, još uvijek nisam dobio službenu dijagnozu. Postoji nekoliko različitih dijagnoza na koje se sumnja, ali nijedna nije službena.
J - Nije za mene, ali za liječnike je, ha ha :) Nakon otprilike 3 tjedna bilo mi je dosta toga da sam bolesna i bila sam jako nesretna što sam propustila toliko predavanja na fakultetu, pa sam počela „guglati“ svoje simptome. U to vrijeme jedina pretraga koju sam napravila bio je bris nosa i grla i oba su bila negativna. Tražila sam bolesti koje mogu uzrokovati sterilnu upalu grla, duboki umor, smetnje spavanja, bolove u zglobovima i mišićima, tahikardiju i tahipneju i tako dalje, a jedina koja je 100 % odgovarala i nije izostavljala nijedan simptom bila je ME/SKU (ME/CFS). Ukratko, ispravno sam sama sebi postavila dijagnozu nakon nešto više od 3 tjedna. Rekla sam svojoj liječnici obiteljske medicine da sumnjam na ME/SKU, ali ona je rekla da to ne mogu imati jer sam prevesela i pozitivna. Nisam baš shvaćala kakve to veze ima s tim da imam ili nemam ME/SKU. Još nisam bila upoznata s užasnim predrasudama s kojima se suočavaju oboljeli. Ali bila sam i više nego sretna vjerovati joj na riječ jer zaista nisam željela imati jednu od najonesposobljavajućih doživotno neizlječivih bolesti.
Svaki posjet specijalistu budio je nadu da će netko od njih znati što nije u redu i popraviti to. Nisam spomenula ME/SKU nikome od njih. Liječnica obiteljske medicine rekla je da ga nemam, a osim toga nisam željela utjecati na njihov proces razmišljanja i odvesti ih na krivi put. Liječnici su temeljito odradili svoj posao i uklonili sumnju na mnoge bolesti, no mnogi od njih bili su iznimno okrutni i vrijeđali su. Kad vam život zaustavi neka bolest i uđete u liječničku ordinaciju, polažete sve nade u liječnike. Patite, a oni imaju moć testirati vas ili ne, liječiti vas ili ne, prekinuti vašu patnju ili je povećati. Kad ste tako otvoreni i ranjivi, okrutne riječi i osuđivanje najteže pogađaju. Prošle su 4 godine, a ja još uvijek nisam imala dijagnozu. Uzela sam međunarodne kriterije za ME/SKU, pronašla autora koji mi je geografski najbliži i otišla tamo. Bila sam već prebolesna da bih mogla putovati automobilom, ali nismo imali izbora. Vozili su me roditelji. Vozili smo se ne duže od 3 sata svaki dan, a ja sam ležala na stražnjem sjedalu s čepićima za uši i navlakom za oči. Moja je bolest postala toliko teža samo od tog jednog putovanja da ne znam je li se isplatilo.
No napokon mi je stručnjak službeno dijagnosticirao ME/SKU, više od 4 godine nakon što sam ja prvi put posumnjala na njega.
J - Ovo nije bolest koja utječe na vaš život, ovo je bolest koja vam do temelja razori život.
Korak po korak vam oduzima ljudskost. Počinjete gubiti ljude, iskustva, postignuća jedno po jedno. Izgubila sam diplomu, karijeru, dečka, obitelj, prijatelje, putovanja, otvoreno nebo, mjesečinu, filmove, YouTube, kupovinu, knjige, glazbu, razgovore, prirodu, kišu, sposobnost jesti 99% hrane, tuširati se, hodati, sjediti uspravno, ići na WC, brisati vlastitu stražnjicu, ...
Budući da financiranje istraživanja gotovo i ne postoji, nema odobrenih terapija. Probala sam mnoge eksperimentalne lijekove koje su mi predložili liječnici ili dodatke prehrani o kojima sam čitala na internetu, vježbe, fizioterapiju ... Neki nisu učinili apsolutno ništa, a drugi su mi pogoršali stanje. Osim toga, za to da odlučim s kojom ću od tisuće neprovjerenih terapija sljedeće riskirati, i hoću li uopće, potrebno je puno emocionalne i mentalne energije
U prvih nekoliko godina moje bolesti moji roditelji i ja morali smo naučiti čitati medicinska istraživanja. Proveli bismo sate raspravljajući o simptomima i terapijama. Čini mi se kao da nema liječnika u Hrvatskoj kod kojeg nismo bili u nadi da ću dobiti dijagnozu. Toliko smo vremena provodili u bolnicama i liječničkim ordinacijama. Sve što mi ljudi radimo zahtijeva energiju i koncentraciju, koje ja nemam. Čak i aktivnosti koje se, dok je čovjek zdrav, smatraju odmaranjem, poput gledanja televizije ili igranja neke igre, za mene su bile krajnje iscrpljujuće. Sada su postale nemoguće. Prikovana sam za krevet i godinama nisam izašla iz spavaće sobe.
J - Tu je „Udruga za oboljele od mijalgičkog encefalomijelitisa, disautonomije i fibromialgije“. Oni pomažu pacijentima i njihovim obiteljima da stupe u kontakt s drugim oboljelima, educiraju pacijente o
ME/SKU, informiraju javnost i medije o našoj bolesti i problemima s kojima se susrećemo, povezuju se s udrugama za ME/SKU u drugim zemljama...
Ivan - U Hrvatskoj je samo nekoliko liječnika, premalo, zainteresiranih za to da se bave SKU/ME-om i istraživanjem i praćenjem najnovijih znanstvenih dostignuća u Europi i svijetu. Kao što sam ranije spomenuo, samo nekoliko liječnika u cijeloj Hrvatskoj ozbiljno shvaća SKU/ME, nažalost drugi o tome znaju vrlo malo ili gotovo ništa i drže se isključivo svoje medicinske specijalnosti.
J - U Hrvatskoj? Ne, koliko ja znam. Posjetila sam mnoge liječnike u različitim gradovima i razgovarala s njima o tome. Čak sam poslala i sažetu medicinsku literaturu o ME/SKU onima koji su bili najviše pogrešno informirani, ali su to ignorirali. Međutim, sada više zapravo ne mogu ići na preglede kod liječnika. Ironično, što vam je zdravlje lošije, medicinski sustav je sve nedostupniji. Prikovana sam za krevet i većina specijalista nije zainteresirana za kućne posjete, gotovo svi medicinski uređaji preveliki su da ih se unese u moju spavaću sobu, a donedavno cijeli moj grad nije imao niti jedan mobilni ultrazvuk. Kad me voze u bolnicu, to za moje zdravlje ima velike posljedice, pa se uvijek postavlja pitanje: je li dovoljno ozbiljno da riskiram trajno pogoršanje? Ukratko, možda se u posljednjih nekoliko godina i pojavio neki zainteresirani liječnik, ali ja za to ne bih znala.
J - Mnogi liječnici su potpuno neinformirani. Kad se radi o ovoj bolesti, to je dobra stvar jer su oni obično otvoreniji za čitanje novih istraživanja i nalaza, dok su oni koji misle da je dobro poznaju, zapravo toliko pogrešno informirani da je to šokantno. Mnogi od njih počinju spominjati psihijatre čim se upotrijebi riječ „umor“.
Psihijatrija nije koš za otpad u koji mogu prikladno odbaciti pacijente koje ne znaju kako liječiti. Nije važno kojoj grani medicine dijagnoza pripada sve dok je ispravna. Specijalisti vrlo lako prihvaćaju negativne rezultate laboratorijskih testova čak i kad znaju da test nije jako osjetljiv, ali kada negativan rezultat dolazi od psihijatra ili psihologa, ne žele prihvatiti da ne postoje problemi s mentalnim zdravljem.
Posjetila sam nekoliko psihijatara kao dio dijagnostičkog procesa, a uz to sam obavila psihološko i neuropsihološko testiranje. Psihijatri koje sam posjetila, slažu se sa mnom po ovom pitanju i zapravo sam imala vrlo ugodna iskustva s njima.
Zbog toga sam naučila da je opis mojih simptoma bez upotrebe riječi „umor“ puno učinkovitiji. Sada znam razliku između „Doktore, uvijek sam umorna“ i „Doktore, imam kognitivne poteškoće, preosjetljivost osjetila, ne mogu se koncentrirati, tijelo mi ne može regulirati temperaturu, dobijem tahikardiju kad sjednem, noge mi postaju ljubičaste, zamijenila sam dan za noć, moj san je neokrepljujući ...“.
To je zapravo bilo edukativno jer ono što sam mislila da je umor, bilo je mnogo različitih problema. Na primjer, mislila sam da se umorim dok stojim samo zato što moje tijelo ne proizvodi dovoljno energije, ali mnogo veći problem bio je sindrom posturalne ortostatske tahikardije (POTS) s tahikardijom, tahipnejom, nakupljanjem krvi, mioklonusom itd. POTS je uobičajen komorbiditet kod ME/SKU, ali odmah kad sam dobila ME/SKU, prije više od deset godina, nisam ni znala da postoji. Sada znam.
J - Od liječnika, apsolutno ne. U većini slučajeva odlasci liječniku samo su me učinili još bolesnijom, zbog napora koji sam morala uložiti da dođem tamo, razgovaram s njima i opišem svoje simptome, kao i od mnogih neugodnih pregleda i testova. Njihove predrasude i oštre riječi također su uzele danak. Pogotovo na početku. Bila sam mlada, nisam znala kako se zauzeti za sebe niti kako prepoznati liječnika spremnog pratiti najnovija medicinska dostignuća. Sada imam odgovarajuću podršku, ali za to mi je trebalo više specijalista nego što imam volje pobrojati. Ipak, to je bilo nešto što je trebalo učiniti. Što se tiče invalidnina, skandalozno je da ME/SKU ne ispunjava nijednu službenu kategoriju invaliditeta, ali kada osoba boluje od dovoljno ozbiljne bolesti i potpuno je nesposobna brinuti se o sebi, moguće je, bez obzira na to o kojoj se bolesti radi.
J - Nikada nisam dobila nikakvu terapiju za ME/SKU koju je predložio liječnik u Hrvatskoj. Nedostatak istraživanja o liječenju ME/SKU, baš kao i nedostatak istraživanja bilo kojeg aspekta ME/SKU, znači da ne postoje znanstveno potkrijepljene terapije. To je sramota koju nosi cijelo čovječanstvo. Želim da se medicinski radnici podsjete na to svaki put kad se susretnu s osobom oboljelom od ME/SKU. Međutim, to ne znači da ne mogu učiniti ništa kako bi pomogli. Moraju pomoći. Pravilna dijagnoza i priznavanje simptoma pomažu. Unatoč nemogućnosti izravnog liječenja ME/SKU, neki se simptomi mogu ublažiti te je potrebno pratiti i rješavati različite deficijencije do kojih dolazi u tako teškoj kroničnoj bolesti. Na primjer, čistom sam srećom pročitala meta-analizu o suplementaciji vitaminom D i naučila da se ne može unijeti dovoljno samo hranom. Morala sam zatražiti od specijalista da mi napravi pretragu iz krvi, a moja razina vitamina D bila je opasno niska. Nisam trebala biti ja ta koja će to sama otkriti kad me navodno prati liječnik obiteljske medicine i nekoliko specijalista koji jako dobro znaju da sam prikovana za krevet i svo vrijeme provodim u zamračenoj prostoriji. Također, ja ne bih trebala biti ta koja mora čitati znanstvena istraživanja, kad nemam medicinsko obrazovanje i jedva mogu pročitati više od nekoliko redaka dnevno.
To dobro znaš i sam jer mi je trebalo više od godinu dana da ti odgovorim na ova pitanja :)
Ivan - U Hrvatskoj, ali i u svijetu, sve je više ljudi počelo govoriti o i pokazivati interes za SKU/ME nakon pandemije bolesti COVID-19 jer su simptomi kod velikog broja ljudi nakon što su oboljeli od bolesti COVID-19 identični simptomima SKU/ME. Mislim da bi zbog te činjenice za sve sa SKU/ME budućnost mogla biti bolja zahvaljujući mnogo većoj pozornosti i interesu cijelog svijeta, a time i većem broju liječnika za ovu bolest u Hrvatskoj.
J - Mislim da svoju budućnost dijelimo s ostatkom oboljelih od ME/SKU u svijetu. Hrvatska je premala da bismo išta mogli učiniti sami, ali mi smo dio EU, pa čak i ako se terapija ili lijek pronađu izvan EU (što je najvjerojatnije s obzirom na to da ovdje ima još manje istraživanja), sigurna sam da bi na kraju stigao i do nas. U kontaktu sam s OMF-om i laboratorijem u Stanfordu, čak sam poslala i uzorak kose, tako da se zaista osjećam povezano i da smo svi zajedno u ovome.
I interviewed Ivan and J about what life was like for them living with M.E in Croatia.
- How did you get ill?
J - I had the most ordinary day: I went to my University classes, in the evening I went to the usual Martial Arts class I took three times a week, and I went to bed feeling fine. Next day I woke up ill. I had a sore throat, low-grade fever, and was so weak I could hardly sit up in bed. I didn't think much of it at the time. I was 22 and getting a sore throat in the winter and being unable to leave the bed has been a regular occurrence for me ever since my childhood. Each time I would recover completely. Until I didn't
- Has it been difficult to get diagnosed?
J - It hasn't for me, but it has for the doctors, ha ha :) After about 3 weeks I was fed up with being ill and very unhappy about missing so many classes at the University, so I started Googling my symptoms. At the time the only medical test I had was a nose and throat swab and both came back negative. I was looking for diseases that can cause sterile sore throat, profound tiredness, sleep disturbances, joint and muscle aches, tachycardia and tachypnea, and so on, and the only one that fit 100% and didn't leave any symptoms out was ME/CFS. In short, I correctly diagnosed myself after a bit more than 3 weeks. I told my GP I suspected ME/CFS but she said I couldn't possibly have it because I'm too cheerful and positive. I didn't really understand what that had to do with having or not having ME/CFS. I wasn't yet familiar with horrible prejudices sufferers face. But I was more than happy to take her at her word because I really didn't want to have one of the most disabling lifelong incurable diseases.
Each visit to the specialist was rekindling of hope that one of them would know what was wrong and fix it. I didn't mention ME/CFS to any of them. GP said I didn't have it, and besides I didn't want to influence their thought process and lead them down the wrong path. Doctors did their job thoroughly and eliminated many diseases, but many of them were extremely cruel and insulting. When you have your life stopped by a disease and you enter a doctor's office you are laying all your hopes on them. You are suffering and they have the power to test you or not, to treat you or not, to stop your suffering or increase it. When you're so open and vulnerable cruel words and judgement cut the deepest. By the time 4 years had passed, I still didn't have a diagnosis. I took ME/CFS International Consensus Criteria, found the author who was geographically closest to me and went there. I was already too ill to handle car travel but we had no choice. My parents drove me. We drove no longer than 3 hours each day and I was lying down on the back seat with ear-plugs and eye cover. My disease increased in severity just from that one trip so much that I don't know if it was worth it.
But I finally got officially diagnosed with ME/CFS by an expert, more than 4 years after I first suspected it.
- How does this disease affect you?
J - This is not really a disease that affects your life, this is a disease that completely and utterly destroys your life.
It takes away your humanity step by step. You start to lose people, experiences, achievements one by one. I have lost my degree, my career, my boyfriend, family, friends, vacations, open sky, moonlight, movies, YouTube, shopping, books, music, conversations, nature, rain, ability to eat 99% of food, showers, walking, sitting upright, going to the toilet, wiping my butt,...
Since the research funding is almost nonexistent there are no approved treatments. I've tried many experimental medication suggested by doctors, or supplements I read about online, exercise, physiotherapy... Some did absolutely nothing, and the rest made me worse. It also takes so much emotional and mental energy to decide which of the thousands of the untested therapies I am going to risk it with next, and if I should at all.
In the first few years of my illness my parents and I had to learn how to read medical research. We would spend hours discussing symptoms and therapies. We went to what feels like every doctor in the country hoping to get a diagnosis. We spent so much time in hospitals and doctor's offices. Everything we humans do requires energy and concentration, which I don't have. Even activities that are considered resting when you are healthy, such as watching TV or playing a game were utterly exhausting for me. Now they became impossible. I am bedridden and haven't left my bedroom for years.
- Do you know of any support groups or associations in Croatia for those suffering from ME/CFS? If so what are their aims?
J - They are called "Udruga za oboljele od mijalgičkog encefalomijelitisa, disautonomije i fibromialgije". They help patients and their families get in touch with other sufferers, educate patients about ME/CFS, inform the public and media about our disease and problems we face, connect with ME/CFS associations in other countries...
- Are there doctors who would be interested in the research into ME/CFS and any recent scientific advances?
J - In Croatia? Not as far as I know. I've seen and spoken about it with many doctors, in different cities. I even mailed some concise medical literature about ME/CFS to those who were most misinformed but they ignored it. However, I don't really get to have doctor's appointments any more. Ironically, the worse your health is the less accessible the medical system is. I am bedridden and most specialists are not interested in doing home visits, almost all medical devices are too large to be brought into my bedroom, and until recently my whole town didn't even have a single mobile ultrasound. Being carried to a hospital takes a huge toll on my health, so there's always the question: is this serious enough to risk permanent deterioration? In short, an interested doctor might have appeared in the last few years and I wouldn't know about it.
- How do doctors and government officials perceive ME/CFS in Croatia?
J - A lot of doctors are completely uninformed. With this disease, that's a good thing because they are usually the most open to reading new research and findings, while those who think they know it well are, in fact, just shockingly misinformed. A lot of them start mentioning psychiatrists as soon as the word "fatigue" is used.
Psychiatry is not a waste basket where they can conveniently get rid of the patients they don't know how to treat. It doesn't matter which branch of medicine a diagnosis belongs in as long as it's the correct one. Specialists very easily accept negative lab test results even when they know the test is not highly sensitive, but won't accept that there are no mental health issues when a negative comes back from a psychiatrist or psychologist.
I have seen several psychiatrists as a part of the diagnostic process, in addition to doing a psychological and neuropsychological testing. Psychiatrists I saw agree with me about this issue, and I actually had very pleasant experiences with them.
Because of this, I learned that describing my symptoms without using the word "fatigue" is a lot more effective. Now I know the difference between "Doctor, I'm always tired," and "Doctor, I have cognitive difficulties, sensory hypersensitivity, I can't concentrate, my body can't regulate temperature, I get tachycardia when I sit up, my legs turn purple, I have day-and night reversal, unrefreshing sleep...."
It was actually educational because what I thought was fatigue were many different issues. For example, I thought I get tired when standing up just because my body doesn't produce enough energy but a much bigger problem was Postural orthostatic tachycardia syndrome (POTS) with tachycardia, tachypnea, blood pooling, myoclonus etc. POTS is a common comorbidity in ME/CFS but when I first got ME/CFS, more than a decade ago, I didn't even know it existed. Now I know.
- Do patients receive adequate support? Can they receive disability benefits when they are unable to work?
J - From doctors, absolutely not. Most visits to doctors have done nothing but left me sicker from effort to get there, to speak to them and describe my symptoms, and the many unpleasant exams and tests. Their prejudice and harsh words also took their toll. Especially in the beginning. I was young, didn't know how to stand up for myself, or how to recognize a doctor willing to follow the newest medical advances. Now I do have adequate support, but it took more specialist than I am willing to count. Still, it was something that had to be done. As for disability benefits, scandalously ME/CFS doesn't fulfill any official category for disability, but once you're severe enough and completely unable to take care of yourself, it is possible, no matter which disease one has.
- What changes would you like to see to the treatments currently proposed in Croatia?
J - I've never gotten any treatment for ME/CFS proposed by a doctor in Croatia. Lack of research into treatments for ME/CFS, just like the lack of research into any aspect of ME/CFS, means that there are no scientifically backed treatments. That is the shame the whole humanity carries. I want medical professionals to be reminded of that every time they meet an ME/CFS sufferer. However, that doesn't mean there's nothing they can do to help. They must help. Proper diagnosis and acknowledgment of symptoms is helpful. And, despite not being able to treat ME/CFS directly, some symptoms can be eased, and various deficiencies that arise from having such a severe chronic illness should be monitored and addressed. For example, it was by pure luck that I read a meta-analysis on vitamin D supplementation and learned one can't get enough of it just from food. I had to ask a specialist to order a blood test, and sure enough my vitamin D levels were dangerously low. I shouldn't have had to be the one who discovers that on my own when I'm supposedly being followed by a GP and several specialists who know full well I am bedridden and spend all the time in a darkened room. I also shouldn't be the one who has to read scientific research when I have no medical training and can barely read more than a few lines a day.
Which you know well, since it took me more than a year to answer these questions for you :)
- What does the future look like for ME/CFS patients in Croatia? Is there reason to be positive?
Ivan - In Croatia as well as in the world, more and more people started talking and showing interest in CFS / ME after the COVID-19 pandemic, because the symptoms in a large number of people after suffering from COVID-19 are identical to CFS / ME. I think that due to this fact it could be better for everyone with CFS / ME in the future because there is much more attention and interest from the whole world, and thus a larger number of doctors in Croatia for this disease.
J - I think we share our future with the rest of the ME/CFS sufferers in the world. Croatia is too small to do anything on our own, but we are a part of the EU, and even if treatment or cure were found outside of the EU (which is the most likely considering the even bigger lack of research here) I am sure it would eventually reach us. I have been in contact with OMF and Stanford laboratory, and even sent a hair sample, so I really feel connected and that we are all in this together.
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Intervjuirao sam Ivana i J o tome kako izgleda njihov život s ME u Hrvatskoj.
- Kako ste se razboljeli?
Ivan - Sve je počelo krajem kolovoza 2017. nakon jednog teškog biciklističkog treninga kada sam imao 43 godine. Cijeli život profesionalno sam napredovao u sportu prvo kao sportaš, a kasnije i kao trener. Sljedeći dan dobio sam visoku temperaturu i sinusitis (upalu sinusa). Kako sam tada bio izbornik hrvatske triatlonske reprezentacije, morao sam tako bolestan odvesti sportaše na utrku u Rumunjsku jer me nije imao tko zamijeniti, a to mi je dodatno iscrpilo tijelo. Kad sam se vratio s utrke, umor se znatno povećao, kao i bol u mišićima i zglobovima, bilo je to stanje slično gripi, koje traje sve do danas.
J - Bio je to najobičniji dan: bila sam na predavanju na fakultetu, navečer sam bila na tečaju borilačkih vještina koji sam pohađala tri puta tjedno i otišla sam spavati osjećajući se dobro. Sutradan sam se probudila bolesna. Imala sam upaljeno grlo, blagu temperaturu i bila sam toliko slaba da sam se jedva mogla posjesti u krevetu. Tada nisam puno razmišljala o tome. Imala sam 22 godine, a to da imam upaljeno grlo zimi i da ne mogu iz kreveta za mene nije bilo ništa neobično još od djetinjstva. Svaki puta bih se potpuno oporavila. Sve dok jednom nisam.
- Je li bilo teško dobiti dijagnozu?
Ivan - Čak i nakon nešto više od 4 godine, još uvijek nisam dobio službenu dijagnozu. Postoji nekoliko različitih dijagnoza na koje se sumnja, ali nijedna nije službena.
J - Nije za mene, ali za liječnike je, ha ha :) Nakon otprilike 3 tjedna bilo mi je dosta toga da sam bolesna i bila sam jako nesretna što sam propustila toliko predavanja na fakultetu, pa sam počela „guglati“ svoje simptome. U to vrijeme jedina pretraga koju sam napravila bio je bris nosa i grla i oba su bila negativna. Tražila sam bolesti koje mogu uzrokovati sterilnu upalu grla, duboki umor, smetnje spavanja, bolove u zglobovima i mišićima, tahikardiju i tahipneju i tako dalje, a jedina koja je 100 % odgovarala i nije izostavljala nijedan simptom bila je ME/SKU (ME/CFS). Ukratko, ispravno sam sama sebi postavila dijagnozu nakon nešto više od 3 tjedna. Rekla sam svojoj liječnici obiteljske medicine da sumnjam na ME/SKU, ali ona je rekla da to ne mogu imati jer sam prevesela i pozitivna. Nisam baš shvaćala kakve to veze ima s tim da imam ili nemam ME/SKU. Još nisam bila upoznata s užasnim predrasudama s kojima se suočavaju oboljeli. Ali bila sam i više nego sretna vjerovati joj na riječ jer zaista nisam željela imati jednu od najonesposobljavajućih doživotno neizlječivih bolesti.
Svaki posjet specijalistu budio je nadu da će netko od njih znati što nije u redu i popraviti to. Nisam spomenula ME/SKU nikome od njih. Liječnica obiteljske medicine rekla je da ga nemam, a osim toga nisam željela utjecati na njihov proces razmišljanja i odvesti ih na krivi put. Liječnici su temeljito odradili svoj posao i uklonili sumnju na mnoge bolesti, no mnogi od njih bili su iznimno okrutni i vrijeđali su. Kad vam život zaustavi neka bolest i uđete u liječničku ordinaciju, polažete sve nade u liječnike. Patite, a oni imaju moć testirati vas ili ne, liječiti vas ili ne, prekinuti vašu patnju ili je povećati. Kad ste tako otvoreni i ranjivi, okrutne riječi i osuđivanje najteže pogađaju. Prošle su 4 godine, a ja još uvijek nisam imala dijagnozu. Uzela sam međunarodne kriterije za ME/SKU, pronašla autora koji mi je geografski najbliži i otišla tamo. Bila sam već prebolesna da bih mogla putovati automobilom, ali nismo imali izbora. Vozili su me roditelji. Vozili smo se ne duže od 3 sata svaki dan, a ja sam ležala na stražnjem sjedalu s čepićima za uši i navlakom za oči. Moja je bolest postala toliko teža samo od tog jednog putovanja da ne znam je li se isplatilo.
No napokon mi je stručnjak službeno dijagnosticirao ME/SKU, više od 4 godine nakon što sam ja prvi put posumnjala na njega.
- Kako ova bolest utječe na vas?
J - Ovo nije bolest koja utječe na vaš život, ovo je bolest koja vam do temelja razori život.
Korak po korak vam oduzima ljudskost. Počinjete gubiti ljude, iskustva, postignuća jedno po jedno. Izgubila sam diplomu, karijeru, dečka, obitelj, prijatelje, putovanja, otvoreno nebo, mjesečinu, filmove, YouTube, kupovinu, knjige, glazbu, razgovore, prirodu, kišu, sposobnost jesti 99% hrane, tuširati se, hodati, sjediti uspravno, ići na WC, brisati vlastitu stražnjicu, ...
Budući da financiranje istraživanja gotovo i ne postoji, nema odobrenih terapija. Probala sam mnoge eksperimentalne lijekove koje su mi predložili liječnici ili dodatke prehrani o kojima sam čitala na internetu, vježbe, fizioterapiju ... Neki nisu učinili apsolutno ništa, a drugi su mi pogoršali stanje. Osim toga, za to da odlučim s kojom ću od tisuće neprovjerenih terapija sljedeće riskirati, i hoću li uopće, potrebno je puno emocionalne i mentalne energije
U prvih nekoliko godina moje bolesti moji roditelji i ja morali smo naučiti čitati medicinska istraživanja. Proveli bismo sate raspravljajući o simptomima i terapijama. Čini mi se kao da nema liječnika u Hrvatskoj kod kojeg nismo bili u nadi da ću dobiti dijagnozu. Toliko smo vremena provodili u bolnicama i liječničkim ordinacijama. Sve što mi ljudi radimo zahtijeva energiju i koncentraciju, koje ja nemam. Čak i aktivnosti koje se, dok je čovjek zdrav, smatraju odmaranjem, poput gledanja televizije ili igranja neke igre, za mene su bile krajnje iscrpljujuće. Sada su postale nemoguće. Prikovana sam za krevet i godinama nisam izašla iz spavaće sobe.
- Znate li za neku grupu podrške ili udrugu u Hrvatskoj za osobe oboljele od ME/SKU? Ako da, koji su njihovi ciljevi?
J - Tu je „Udruga za oboljele od mijalgičkog encefalomijelitisa, disautonomije i fibromialgije“. Oni pomažu pacijentima i njihovim obiteljima da stupe u kontakt s drugim oboljelima, educiraju pacijente o
ME/SKU, informiraju javnost i medije o našoj bolesti i problemima s kojima se susrećemo, povezuju se s udrugama za ME/SKU u drugim zemljama...
- Postoje li liječnici koji bi bili zainteresirani za istraživanje ME/SKU i za eventualni noviji znanstveni napredak?
Ivan - U Hrvatskoj je samo nekoliko liječnika, premalo, zainteresiranih za to da se bave SKU/ME-om i istraživanjem i praćenjem najnovijih znanstvenih dostignuća u Europi i svijetu. Kao što sam ranije spomenuo, samo nekoliko liječnika u cijeloj Hrvatskoj ozbiljno shvaća SKU/ME, nažalost drugi o tome znaju vrlo malo ili gotovo ništa i drže se isključivo svoje medicinske specijalnosti.
J - U Hrvatskoj? Ne, koliko ja znam. Posjetila sam mnoge liječnike u različitim gradovima i razgovarala s njima o tome. Čak sam poslala i sažetu medicinsku literaturu o ME/SKU onima koji su bili najviše pogrešno informirani, ali su to ignorirali. Međutim, sada više zapravo ne mogu ići na preglede kod liječnika. Ironično, što vam je zdravlje lošije, medicinski sustav je sve nedostupniji. Prikovana sam za krevet i većina specijalista nije zainteresirana za kućne posjete, gotovo svi medicinski uređaji preveliki su da ih se unese u moju spavaću sobu, a donedavno cijeli moj grad nije imao niti jedan mobilni ultrazvuk. Kad me voze u bolnicu, to za moje zdravlje ima velike posljedice, pa se uvijek postavlja pitanje: je li dovoljno ozbiljno da riskiram trajno pogoršanje? Ukratko, možda se u posljednjih nekoliko godina i pojavio neki zainteresirani liječnik, ali ja za to ne bih znala.
- Kako liječnici i državni dužnosnici doživljavaju ME/SKU u Hrvatskoj?
J - Mnogi liječnici su potpuno neinformirani. Kad se radi o ovoj bolesti, to je dobra stvar jer su oni obično otvoreniji za čitanje novih istraživanja i nalaza, dok su oni koji misle da je dobro poznaju, zapravo toliko pogrešno informirani da je to šokantno. Mnogi od njih počinju spominjati psihijatre čim se upotrijebi riječ „umor“.
Psihijatrija nije koš za otpad u koji mogu prikladno odbaciti pacijente koje ne znaju kako liječiti. Nije važno kojoj grani medicine dijagnoza pripada sve dok je ispravna. Specijalisti vrlo lako prihvaćaju negativne rezultate laboratorijskih testova čak i kad znaju da test nije jako osjetljiv, ali kada negativan rezultat dolazi od psihijatra ili psihologa, ne žele prihvatiti da ne postoje problemi s mentalnim zdravljem.
Posjetila sam nekoliko psihijatara kao dio dijagnostičkog procesa, a uz to sam obavila psihološko i neuropsihološko testiranje. Psihijatri koje sam posjetila, slažu se sa mnom po ovom pitanju i zapravo sam imala vrlo ugodna iskustva s njima.
Zbog toga sam naučila da je opis mojih simptoma bez upotrebe riječi „umor“ puno učinkovitiji. Sada znam razliku između „Doktore, uvijek sam umorna“ i „Doktore, imam kognitivne poteškoće, preosjetljivost osjetila, ne mogu se koncentrirati, tijelo mi ne može regulirati temperaturu, dobijem tahikardiju kad sjednem, noge mi postaju ljubičaste, zamijenila sam dan za noć, moj san je neokrepljujući ...“.
To je zapravo bilo edukativno jer ono što sam mislila da je umor, bilo je mnogo različitih problema. Na primjer, mislila sam da se umorim dok stojim samo zato što moje tijelo ne proizvodi dovoljno energije, ali mnogo veći problem bio je sindrom posturalne ortostatske tahikardije (POTS) s tahikardijom, tahipnejom, nakupljanjem krvi, mioklonusom itd. POTS je uobičajen komorbiditet kod ME/SKU, ali odmah kad sam dobila ME/SKU, prije više od deset godina, nisam ni znala da postoji. Sada znam.
- Dobivaju li pacijenti odgovarajuću podršku? Mogu li primati invalidninu kada su nesposobni za rad?
J - Od liječnika, apsolutno ne. U većini slučajeva odlasci liječniku samo su me učinili još bolesnijom, zbog napora koji sam morala uložiti da dođem tamo, razgovaram s njima i opišem svoje simptome, kao i od mnogih neugodnih pregleda i testova. Njihove predrasude i oštre riječi također su uzele danak. Pogotovo na početku. Bila sam mlada, nisam znala kako se zauzeti za sebe niti kako prepoznati liječnika spremnog pratiti najnovija medicinska dostignuća. Sada imam odgovarajuću podršku, ali za to mi je trebalo više specijalista nego što imam volje pobrojati. Ipak, to je bilo nešto što je trebalo učiniti. Što se tiče invalidnina, skandalozno je da ME/SKU ne ispunjava nijednu službenu kategoriju invaliditeta, ali kada osoba boluje od dovoljno ozbiljne bolesti i potpuno je nesposobna brinuti se o sebi, moguće je, bez obzira na to o kojoj se bolesti radi.
- Koje biste promjene htjeli vidjeti u terapijama koje su trenutno predložene u Hrvatskoj?
J - Nikada nisam dobila nikakvu terapiju za ME/SKU koju je predložio liječnik u Hrvatskoj. Nedostatak istraživanja o liječenju ME/SKU, baš kao i nedostatak istraživanja bilo kojeg aspekta ME/SKU, znači da ne postoje znanstveno potkrijepljene terapije. To je sramota koju nosi cijelo čovječanstvo. Želim da se medicinski radnici podsjete na to svaki put kad se susretnu s osobom oboljelom od ME/SKU. Međutim, to ne znači da ne mogu učiniti ništa kako bi pomogli. Moraju pomoći. Pravilna dijagnoza i priznavanje simptoma pomažu. Unatoč nemogućnosti izravnog liječenja ME/SKU, neki se simptomi mogu ublažiti te je potrebno pratiti i rješavati različite deficijencije do kojih dolazi u tako teškoj kroničnoj bolesti. Na primjer, čistom sam srećom pročitala meta-analizu o suplementaciji vitaminom D i naučila da se ne može unijeti dovoljno samo hranom. Morala sam zatražiti od specijalista da mi napravi pretragu iz krvi, a moja razina vitamina D bila je opasno niska. Nisam trebala biti ja ta koja će to sama otkriti kad me navodno prati liječnik obiteljske medicine i nekoliko specijalista koji jako dobro znaju da sam prikovana za krevet i svo vrijeme provodim u zamračenoj prostoriji. Također, ja ne bih trebala biti ta koja mora čitati znanstvena istraživanja, kad nemam medicinsko obrazovanje i jedva mogu pročitati više od nekoliko redaka dnevno.
To dobro znaš i sam jer mi je trebalo više od godinu dana da ti odgovorim na ova pitanja :)
- Kako izgleda budućnost za pacijente s ME/SKU u Hrvatskoj? Je li opravdano imati pozitivan stav?
Ivan - U Hrvatskoj, ali i u svijetu, sve je više ljudi počelo govoriti o i pokazivati interes za SKU/ME nakon pandemije bolesti COVID-19 jer su simptomi kod velikog broja ljudi nakon što su oboljeli od bolesti COVID-19 identični simptomima SKU/ME. Mislim da bi zbog te činjenice za sve sa SKU/ME budućnost mogla biti bolja zahvaljujući mnogo većoj pozornosti i interesu cijelog svijeta, a time i većem broju liječnika za ovu bolest u Hrvatskoj.
J - Mislim da svoju budućnost dijelimo s ostatkom oboljelih od ME/SKU u svijetu. Hrvatska je premala da bismo išta mogli učiniti sami, ali mi smo dio EU, pa čak i ako se terapija ili lijek pronađu izvan EU (što je najvjerojatnije s obzirom na to da ovdje ima još manje istraživanja), sigurna sam da bi na kraju stigao i do nas. U kontaktu sam s OMF-om i laboratorijem u Stanfordu, čak sam poslala i uzorak kose, tako da se zaista osjećam povezano i da smo svi zajedno u ovome.