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PORTUGAL

Over 40,000 people live with M.E in Portugal, I spoke to Elle, André and Ana from Portugal about their experiences.

  • How did you get ill?
Elle - I didn’t have a very obvious trigger, and I think it was a combination of things. The year I got ill, I had the flu followed by a bad virus. I was flying once a week for work, had also taken up road biking. I think that it’s possible a combo of viruses and road biking damaged the ligaments and structure of my craniocervical junction in my neck, as I also now have a CCI/AAI diagnosis. Perhaps this is the root of my ME. It is my latest area of focus, but it’s not something I’m able to pursue in Portugal as it is very specialized, except being able to get an MRI.

André - That's somewhat a difficult question, because it is one that still puzzles me. Usually, CFS patients report developing it after a viral infection but, in my case, it manifested itself following a stressful event at work. I had to make a tremendous effort to supress such stress at the spot, my body turned as rigid as stone and, when I got home, I took an anxiolytic. It was a Friday, Monday was an holiday and both my stress subsided and my body relaxed but, from then on, "classical" symptoms of CFS appeared: insomnia, headaches (from a type which I never had), tremendous fatigue and post exercise malaise. This was in the beginning of November 2010.

Ana - I can’t say for certain because my onset wasn’t immediate, but I know when it started. In Christmas 2013 I managed to catch three infections in three weeks: herpes, an unidentified throat infection that might have been mono and the flu. Ended up being prescribed some antibiotics that probably made everything worse, but I eventually recovered from the infections. However, as 2014 started, I wasn’t feeling well and it didn’t go away. I ended up getting diagnosed with major depression in April and started taking antidepressants, which was probably another mistake. I had atypical reactions to them and got much, much sicker as time went on.

  • Has it been difficult to get diagnosed?
Elle - I didn’t get diagnosed in Portugal as I was living elsewhere. It took a year, although I think some doctors mentioned “chronic fatigue syndrome” and I ignored them. It took me a while to pay attention to that as a diagnosis as I thought it sounded like not a serious disease. And I knew I was very ill.

André - Tremendously. First, because I suffer from chronic depression and all the symptoms were dismissed as just a depressive episode, even though my body "knew" that the fatigue and the aches were different from those of depression; second, because CFS was (and still is) barely heard of and doctors did little more than giving me mainstream medication for the symptoms. I had to be the one making all the research (until I eventually found out that my symptoms were consistent with something called "Chronic Fatigue Syndrome"), bringing awareness to the doctors and fighting for alternatives, from trying specific bloodtests or exams to different medication. I was eventually diagnosed officially in 2012.

Ana - Yes and no. I was lucky. I felt at the time that the depression was probably a misdiagnosis, but I found no other answers it for two years. Just when I was feeling desperate and quit my antidepressants because I knew they brought me no benefit, someone suggested me a second opinion in psychiatry, this time at a private hospital. And since I had nothing to lose but money, I went for it. This doctor told me right away that I wasn’t depressed, but it was possible that I had ME/CFS. It took me around 6 months from that day to the diagnosis, after all the exclusions. I probably would have never been diagnosed with ME/CFS if I didn’t find a doctor who knew of it. And I definitely would have never been diagnosed with it if I didn’t have the means to pay for care at a private hospital. That’s why I feel fortunate, even after being misdiagnosed with major depression for two years. I often wonder how many other portuguese are also ill, but without the means to get a correct diagnosis.

  • How does this disease affect you?
Elle - It has stopped my life essentially for 6 years. I am housebound and spend 90 to 100% of my day in bed. I need a lot of help from my family member who takes care of me. I can’t cook, or help with housework, or drive. I can’t work anymore and rarely see friends. It is very isolating, and tedious. It often feels like endless suffering.

André - Well, I am functional, that is, I work a full time job - with great difficulty (going through the day is a chore and I often have to be on sick leaves for a few days), I have a few hobbies (again, carried with great difficulty) and I can do some minor chores, though things like house chores and cooking are too much of a toll (if we take me working in account). However, to put it simply and using an example I once read: if you divide life into work/duties, leisure and rest, then I have to cut one out. Thus, since the latter is mandatory, my life (and for my own mental sake) is an incredible and harrowing attempt to balance the former two, where caffeine and opioids (codeine, to be more specific) play a major role (and I make a point to mention the opioids given the problem the US face with addiction and, therefore, what desperate measures one has to take to live the semblance of a "normal" life).

Ana - I believe I must be moderately affected, being mostly housebound. I can leave home a couple times a week for short trips, but they usually leave me wasted, too tired to do anything other than rest. If I’m not careful and overdo it even more, I’ll have to spend the day stuck in bed and deal with extra fatigue for weeks, if not months.  I left my job in 2017 and became financially dependent on my partner since then. The constant effort of working full time was making me progressively worse to the point that I spent all time in bed. One of my biggest hobbies was PC gaming, a relatively low impact one at that, and I had to abandon it because I didn’t had the energy to stay seated at a desk and use a mouse and keyboard. I wasn’t even feeding myself properly because I had no energy to eat. And my work productivity plummeted to the point that I was useless at the workplace. I couldn't read a paragraph and be able to make sense of it, or remember what task I did the day before.  I got better since I left work as I’m now able to pace, but every day is a balancing act. Do I make dinner or do I take a shower? Can this chore wait, even if it not being done negatively affects me in other ways? Sometimes I chose poorly and have to deal with the aftermath for weeks.  Thankfully, I have a supporting partner. He understands that I do what I can, and sometimes even more than I should. I don’t know where I would be without him.

  • Do you know of any support groups or associations in Portugal for those suffering from ME/CFS? If so what are their aims?
Elle - No, there are none to my knowledge.

André - Only one that I'm aware of, MYOS. However, while it does include CFS patients, it's basically aimed at people suffering from Fibromyalgia.

Ana - There is no exclusive group or association for ME/CFS. We have a national association for fibromyalgia and chronic fatigue syndrome, but it has very few associates with ME/CFS, so it is ill equipped to recognize and respond to our needs. To make matters worse, some people with fibromyalgia are self diagnosing themselves with CFS because they have chronic fatigue, which is wrong and devalues the actual diagnosis.  This is a hard situation all around to solve because since people don’t feel represented, they don’t join the existing association, maintaining the status quo. People with ME/CFS also depend heavily on allies, thanks to how heavily the illness affects us. Most often we are not able to contribute directly to awareness or activism, as most associations are used to. But it’s hard to rally allies when the illness isn’t being talked about at all in the first place, or worse, being confused with chronic fatigue. However, the worst challenge of all is that people aren’t being diagnosed, so we simply don’t have the numbers to make a difference. I can count with the fingers of one hand the people with the disease I’ve found here in Portugal. Before anything else can improve, this has to change.

  • Are there doctors who would be interested in the research into ME/CFS and the recent scientific advances?
Elle - When I first moved here, I had very low expectations. I had read that the situation here was not good, and couldn’t find any associations. ME/CFS is not a diagnosis given in Portugal and is routinely conflated with fibromyalgia. However, the doctors I have seen know vaguely what it is, and acknowledge their lack of awareness. They do not dispute that it is disabling. I found female doctors were likely to listen, be curious and work with me. I found a less open attitude in male doctors, especially older ones, and I had a few choice comments from them. My strategies for finding doctors is to skew female, look for who is involved with EU level research orgs for their specialty, and to find doctors who publish research, often at University affiliated hospitals. In Portugal, both Coimbre and Porto have University hospitals that I have found doctors at. Also, pick a doctor who is senior enough to have some pull in ordering unusual exams.

Like in most countries, if you can be self directed, and bring literature or articles showing some proof of efficacy, the doctors will work with you to try medications or treatments. In this way, I have worked with a neurologist to try mestinon, despite her saying that ME was not considered to fall under her speciality in Portugal. I worked with a rheumatologist to check hormones, and try hydrocortisone. She referred me to a center for hyperbaric medicine to try that. And I went to a hematologist to check for autoimmunity, MCAS and other mast cell diseases.

André - I do not think so. The doctors that diagnosed me are acquainted with CFS through Fibromyalgia. It's usually me doing research and pointing them new theories and medicines but, since many things are too recent, they're ignored.

Ana - There might be, especially doctors who deal with fibromyalgia, but I don’t believe they’re aware of it or interested in changing their focus to ME/CFS. I don’t believe there are any who might be interested in ME/CFS as a lone entity.

  • How do doctors and government officials perceive ME/CFS in Portugal?
Elle - As far as I know the government doesn’t recognize it at all as a disease. The doctors know that you are ill, but they do not know the disease well. Despite these issues, I’ve made progress here by being self directed, and because generally the Portuguese people want to be helpful. Because the country has an abundance of hospitals and clinics, it’s not difficult to get appointments. Private insurance is inexpensive, and public healthcare is free. There have of course been setbacks and difficulties. You must learn here that arguing and debating is cultural, but someone who says “no, no, no, it cannot be!” for an hour might suddenly say “yes but of course, you are right!” at the end. And there is a lot of bureaucracy and paperwork involved in coming here. But, I’ve made more progress here than in the two other countries I’ve been sick in!

André - It's not legally acknowledged and many doctors don't believe it, dismissing it as depression. Fibromyalgia (and I mention it because of what I said earlier about MYOS) as gained some exposure and has been recognised as a condition a couple of years ago - but CFS is largely ignored by the media, the medical community and government officials.

Ana - They don’t. And that’s the biggest challenge we face. I doubt I would have ever received a diagnosis through the National Health Service, in which most people rely, especially if they are ill enough to not be able to hold a job. Beyond that, there are no official guidelines. The positive part of this is that we don’t end up involuntarily admitted to psych wards or forced into GET. The negative is that we receive no care whatsoever, because there is none to be had. Doesn’t stop the mistreatment, however. I’ve had one doctor tell me, after diagnosis, that ME/CFS doesn’t exist, probably because he never heard of it.

  • Do patients receive adequate support? Can they receive disability benefits when they are unable to work?
Elle - I am an expat here, and I’m unfamiliar with how Portuguese citizens are treated, but I would imagine it is difficult. They probably try to get benefits with a fibromyalgia diagnosis, even if ME/CFS is what they have. But the public healthcare system is good and free, if you can be persistent. The hematologist that I saw was in a public hospital, and ran extensive tests on me. It was all covered for free under the public health system, even specialized diagnostics like autoimmune tests sent to Oxford, and MCAS tests sent to a lab in Spain. I should note that as an expat, it’s possible I know more about what to ask for, and it’s possible that doctors treat me differently. I don’t even speak Portuguese, as am unable to learn it with my cognitive difficulties.

André - No. The best you can expect is to find a doctor that believes in CFS or is very comprehensive. Regarding disability benefits, you won't receive any based on CFS. SInce CFS has no legal recognition, the only thing you will receive are the Social Security payments and according to the general stipulations for sick leaves.

Ana - Not at all. However, this issue isn’t specific to ME/CFS. Ever since the last global financial crisis, it has been very hard for someone who isn’t at death’s door to obtain disability benefits. And there’s often stories on the news of people who are actually dying and being forced to work regardless because they were denied. Another issue is the evaluation itself. The reference table we have for disability evaluation was created for occupational injuries. It is wholly inappropriate to evaluate systemic and/or invisible illnesses. Many patient associations have protested this for years, but nothing was accomplished so far. I’m currently awaiting evaluation, but I’m not feeling very optimistic. Even so, I believe I only have a chance because I am also hard of hearing and progressively losing vision due to another unrelated condition.

  • What changes would you like to see to the treatments currently proposed in Portugal?
Elle - It would be great if doctors recognized this disease and were trained in understanding the constellation of symptoms, how to treat them, and to differentiate from fibromyalgia.

André - The major change I'd like to see would be for CFS to be recognized as an illness, especially since it is recognised by World Health Organization. As for treatments, what I'd really like it was that we pacients were allowed some level of management of our illness in workplaces, that is, to be allowed to take a break when the body "feels" it needs to stop. That could be the difference between doing relatively ok and triggering a crisis.

Ana - The few doctors I managed to find who were aware of ME/CFS, including the one who diagnosed me, recommended CBT and GET. So whatever little information there is, it’s poor. It’s clear it is more UK sourced, and logical as this is Europe, but we would all benefit if doctors also got their information from other sources like the CDC, which excludes GET.

  • What does the future look like for ME/CFS patients in Portugal? Is there reason to be positive?
Elle - At first glance, it might seem a bit hopeless here. But, Portugal actually has both a private and public health care system that is ahead of most countries. They have moved some records and prescriptions online. There are LOTS of doctors in this country, and many universities. The older Portuguese can seem more entrenched in traditional ways of thinking, including some misogynistic attitudes. But the young people of Portugal are well educated and curious. There are many young female doctors, even neurosurgeons. This is huge in making a leap out of paternalistic health care attitudes. There is a strong sense of community and taking care of each other built into the culture. Most young people here speak English well, which means they can learn easily from global research. They travel and feel part of Europe, but have a real sense of pride about their country, and strong belief in their own potential. So, despite the current lack of awareness, this attitude puts them in a good position to learn more as science progresses, and as ideas spread online with patient awareness growing globally.

​André - I'd like to end in a positive tone, but I cannot. The future looks bleak: from the lack of treatments and not being recognized as having a disability to simply being misunderstood or outrightly perceived as "lazy", I see no reasons to be optimistic. We don't have the law, the medical community and the Social Security siding with us. Unless you're wealthy or have a supporting family and friends, it's basically living off of scraps.

Ana - It doesn’t look like anything, because it isn’t possible to imagine a future when there is no present. The illness isn’t known or talked about, besides the times when it is confused with chronic fatigue. I can only have hope for the future. I hope the international interest in the disease will eventually awake the interest of some Portuguese health professionals. It would be great if we had even just one specialist focused on correctly diagnosing and managing ME/CFS, who could give the face and expertise for the disease, dispelling the CFS/chronic fatigue confusion.

Sept 2019

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