Please introduce yourself and tell us what kind of doctor you are.
GB: Yes, I’m Gitte Boumeester. I’ll turn 45 in October. Until my COVID infection, I was a psychiatry resident. That means a doctor in training to become a psychiatrist, and I had one year left before I would have been a psychiatrist. But now I’ve been declared 100% unfit for work.
LV: I’m Laura (de Vries). I’m 38 years old and actually a resident doctor, which means I never did a specialization. But I did complete a PhD in nephrology, in kidney disease.
JP: Well, my name is Jolien Plantinga. I’m 49 years old and I was a general practitioner. Yes, unfortunately now I’m disabled and no longer practicing.
PH: I’m Peter Hulshof, I’m 52 years old and I’m a child and adolescent psychiatrist. Three years ago, in January 2022, I got COVID. I was sick for a few weeks, and afterwards I thought, “Yes, I’ll be fine again,” but it actually never went away.
JP: In my case, it was Lyme disease. Initially in 2004 I had facial paralysis. That was treated, and I thought that was the end of it. But in 2019 it came back in full force in the form of encephalitis.
GB: So in November 2020 I got COVID. I was quite ill for several weeks, and afterwards I thought, “Come on, let’s get going,” straight to physiotherapy and trying to build up work again, but it just didn’t work at all.
LV: In my case, ME probably developed after an infection with a Giardia lamblia parasite. That’s a gut parasite I contracted in Uganda. The literature also shows that this parasite can cause ME.
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How did your day look like as a doctor?
JP: Well, as a general practitioner I started. Yes, I was usually at the practice around 7:45 a.m. A quick chat about how the day would look. A patient every 10 minutes. Uh, well, doing home visits, administration, and sometimes an evening shift. Yes, that was pretty much my day as a doctor.
PH: Before I got sick, I was quite active. I worked about 30 hours a week. I also had many hobbies. So yes, I just had an active life and also an active family life.
GB: I was usually at work around 8:15 a.m., depending on which rotation I had, because I switched every six months. Then I finished between five and seven in the evening. And then, yes, in the evenings and weekends I also studied a lot. In addition, about once every two weeks I had a shift, which meant that after a regular workday I had an evening or night shift, or a weekend shift.
LV: Yes, everything just went automatically. I got up around 6:00 a.m., showered, jumped on my bike to the train to the hospital. Then I did a morning clinic. When that ended, I had lunch, though sometimes even that was skipped. In the afternoon I often had meetings, other tasks, writing letters. Well, and then around 6:00 p.m. I went home again. Then cooking, watching a movie, going to bed early, and then, yes, doing it all over again.
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How does your day look now as a patient?
GB: Yes, it’s totally different now. It’s such a huge world of difference. Now…
Well, in the morning when I wake up, first I take my medication. Make sure I drink enough. Then I move from my bed upstairs to here, to the bed downstairs in the living room. On a good day I make my own breakfast in the kitchen, sitting on a saddle stool, but that still works. Yes, then basically 90, 95, well, 99% of the time I’m horizontal.
LV: I still get up, but not at 6:00 a.m. anymore. That’s really not possible. Usually around 8:00 a.m. the cats pull me out of bed. Then they get food and I lie down on the couch again to recover from that. A while later I make my own breakfast, lie down on the couch again, and that’s basically how the whole day goes.
PH: Yes, my days look really different now. Most hobbies I simply can’t do anymore. Sports are impossible. Reading is difficult, only in short pieces of about 15 minutes. Cooking I still do. That’s actually the only activity I can really manage. And beyond that, it’s just all improvising.
JP: Yes, my days now. They vary a lot from day to day. Starting last spring—or actually the spring before that—I had a treatment for POTS that I responded very well to. Then I was able to go mountain hiking last summer. That was fantastic. Unfortunately, I got COVID, and I think that made my POTS symptoms worse. And now it’s like this: on good days I can cook for myself, occasionally have visitors, and if things go really well, go on an outing. Yes, and on bad days I lie on the couch and just wait for the day to pass.
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What do you do on a good and on a bad day?
LV: One of the most important symptoms of ME is post-exertional malaise (PEM). That means you get sicker from small efforts. So if you do those efforts, well, then you crash afterwards.
Another important symptom of ME is POTS. That’s Postural Orthostatic Tachycardia Syndrome. It means your body cannot properly pump blood against gravity from your legs to your heart and your head.
On days when I have post-exertional malaise, PEM, I feel much worse and then I can’t do any of those things. So I wake up, often with severe headaches and nausea. Sometimes I also vomit, very bad ringing in the ears, and basically the only thing I do then is lie down and hope it passes.
GB: There are sometimes days when I immediately notice: “Oh, I already have a high heart rate despite the medication, I have chest pain.” Well, then I know I really have to lie down most of the time.
PH: That’s a very tricky one, because I tend to push myself too far, and that’s actually been the same for three years. In the beginning I suffered a lot from that, I really did way too much. Yes, and if I do too much, then I get all kinds of complaints, gastrointestinal problems. Sometimes I’ve also vomited, so I really have to pace myself. And precisely on a good day that’s difficult. I always try to do something, also to see how I’m doing, but in moderation. Yes, I still go to the chess club occasionally so I don’t lose that contact. Yes, that’s what I do on good days. On bad days I shouldn’t even think about it, then it’s mainly a lot of resting.
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What did you learn during your training about post-acute infectious diseases (PAIZ)?
LV: I did know that chronic fatigue syndrome existed, and that it meant patients were tired. What I mainly learned was actually that nothing could be done about it, and that treatment consisted of accepting it and trying to stay active. The word ME was mentioned sometimes, but more in the context that it was invented by patients, because patients wanted a biological cause for their complaints that supposedly didn’t exist. So for me, ME was kind of, well, something nonexistent. You had MS, that was a real disease, and ME was something patients had made up.
JP: If we learned anything about it at all, it was more about young girls who, after a viral infection, stayed sick longer than strictly necessary. The idea was that this was due to “secondary gain,” maintaining factors that kept them showing illness behavior. I think in the “hidden curriculum,” as they call it, we picked up a lot of prejudices, especially because it occurs more often in women.
GB: Someone who in your eyes knows better is, of course, your teacher. At that moment it’s a doctor. I myself was, what, in my early twenties? I never doubted for a moment that he might be wrong, or that what he said was inappropriate.
I just accepted it as true, and I must honestly say that I did so right up until almost four years ago, when I started reading and hearing more about it and then experienced it myself.
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To what extent did this influence your own way of treating people with PAIZ? Did you take PAIZ such as ME, Lyme, etc. seriously?
JP: I think Lyme disease, because I had personal experience with it in 2004, before I did my GP training, I at least took seriously as an acute infection. I had no idea about the chronic variant. The last continuing education I attended on Lyme even said that it didn’t exist at all. So in that sense, I didn’t take it seriously enough, I think. As a person, because of all the prejudices also in my private life, I did have judgments about people I met with chronic fatigue syndrome, whom I only saw on their good days.
LV: Well, what I learned during my studies about ME and chronic fatigue definitely played a major role in how I looked at myself. I’ve now been officially ill for over six years, but only got the diagnosis of ME 1.5 years ago. And that was mainly because I didn’t realize it was ME. Yes, because I had basically learned nothing about it. And there was also a part of me that didn’t want to have it. I didn’t want to be that kind of patient. I preferred to have something psychosomatic that could be solved rather than chronic fatigue where nothing could be done. And it was only when I spoke to a colleague GP with Lyme disease that she said to me: “Laura, shouldn’t you read the literature on ME?” And even then I said: “No, it’s psychosomatic.” Well, she kept insisting, and because of her insistence I started reading. And when I read it, I thought: “Yes, yes, this is it. I really do have ME.”
PH: During my clinical rotations I spent part of the time in Suriname, and there I encountered children who developed rabies. Not long after, I myself had dengue. So those were two important moments when I came into contact with viral diseases. And I must say, that really shaped how I looked at them. I always took them seriously, but I noticed that the environment treated them very differently.
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Were you aware of experiences with stigma, iatrogenic harm, care trauma, and the fact that there are severely ill patients who disappear from (the view of) healthcare?
JP: No, I was absolutely not aware of that. No, I once had a question from an ME patient. She asked: “How seriously do you take chronic fatigue syndrome?” And I don’t remember how I responded. I think I just said that I refer people if they have complaints. But no, I wasn’t aware of how serious the impact can be on the lives of people with ME. And certainly not that people disappeared from view because of it. No, I wasn’t aware of that.
LV: Yes, I actually had no idea about the whole history of ME. I didn’t know that people with severe ME existed. I didn’t know that there were people lying in dark rooms. Yes, I really just had no idea. And for me, well, you learn something and if nothing more is said about it, then you don’t… You don’t go questioning and looking everything up. So, no. I only really learned about all of this when I became ill myself. And at first I felt very guilty about that. Because, yes, how could I have missed this? I was also quite ashamed. Especially after hearing all the stories of these extremely sick people, who are now also my fellow patients. But yes, you’re in a system and you can’t do much about it, so I try to be mild about that.
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How do you now, as someone with lived experience, view PAIZ? What do you know now that you didn’t know or understand then?
PH: Yes, that’s a lot. Well, what I experience myself now is that it’s just very heavy. So much comes with it. As I said earlier, your whole life simply changes. That impact. I think you only realize how much impact it really has when you experience it yourself. In addition, concepts like PEM and POTS—I had no idea what those were. And now I know that those are exactly the things that make it so very hard.
GB: Actually very differently. I now just see it as a serious disease. Of course there are different degrees of how sick people are. But it’s really a multisystem disease, where most people simply cannot live their old lives and have to adapt a lot, even to the point of being so extremely ill that they can only lie in bed. I think that’s what doctors don’t realize, even when they do see patients occasionally.
JP: Well, what I know now, that I didn’t know then, is the enormous devastation that these kinds of illnesses can cause in a life. That your entire life really derails. How insufficiently seriously patients are taken, and what problems they face because of that—for example, financial problems, or the impact it has on relationships.
Again, I cannot remember that we ever had a patient in practice who was as sick as I eventually became myself. I wasn’t aware of that. No, I also didn’t know that… I did know that complications could arise from medical treatments, but that was mainly with procedures, not with illnesses and treatments like physiotherapy or cognitive behavioral therapy or things like that. No.
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We still often hear that people are not taken seriously enough by doctors. How did this go for you as a doctor?
GB: Yes, also with difficulty. When I went to the GP, she did take me semi-seriously, but she made it clear that I was the only one in the practice with so many complaints. And when I came back one or two more times, both times because the complaints only got worse and more unpleasant, she said: “Yes, I hope you don’t expect me to now go into long COVID.” And later I thought: “Well, I actually do expect that.” If you have a patient who is seriously ill from a certain condition, then isn’t it normal as a GP to study that condition?
JP: Well, my GP did take me seriously at first, and fortunately she still takes me very seriously now. The neurologist I ended up seeing in the hospital did not take me seriously at all at first. The neurologist denied that I had encephalitis. Three months later I went back to confront him about it. He still denied that I had had encephalitis. In the end, I think it took almost two years, until the summer of 2021, before a neurologist said: “Indeed, the MRI shows abnormalities that indicate encephalitis.” So that diagnosis took two years to arrive.
I then asked: “I have the feeling that the blood flow in my head isn’t right.” That wasn’t investigated at the time, and eventually the diagnosis of POTS was made in the spring of 2024. So it took quite a while before I was treated properly in that respect. In the end, it took from 2019 to 2024 before I got the diagnosis of POTS.
PH: Fortunately, that wasn’t too bad, because I had a GP who was quite down-to-earth about it. It was maybe even the other way around. I myself doubted a lot about what exactly was going on. I thought: “Yes, is this long COVID or could it be something else?” And the GP was very straightforward. She said: “Yes, but I know you as you were before the COVID infection. Back then you could do a lot. You were sporty, had good fitness, and how you are now… that’s such a clear world of difference, it must be long COVID.”
Yes, I kept doubting and said: “Yes, but could it not be something with my heart?” So she did a number of tests just to be sure. I had an ECG. I had a Holter monitor. Some blood tests were done to be sure it wasn’t something else. Well, I was very glad she did that. And even after those tests she said again: “Yes, this is so clearly long COVID, you really don’t need to doubt it anymore.” That helped me a lot.
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Was the process of getting the diagnosis easy?
LV: Well, my process was of course largely determined by my own knowledge. And yes, there was no one who opposed it. So my GP went along with it. The psychologist went along with it. The physiotherapist went along with it, so there was no one who gave a counter-argument. I wasn’t like many ME patients who know very early on that they have the disease and are not believed. That wasn’t the case for me, because I simply didn’t believe it myself. And at the moment I said: “I think I have ME,” I was referred to an internist. That internist also gave the diagnosis, but immediately said: “Yes, I do believe you have ME, but I can’t do anything about it. So I don’t want to help you with medication or symptom relief.” And that was the end of it.
PH: Because my GP kept pointing out to me: “This is just long COVID,” it was easy in my case. Only the options you then have were very limited. At the beginning they said: “We can’t do anything.” I first went to physiotherapy, but they had no experience with it. The occupational therapist, whom I was very satisfied with, also had little experience with long COVID. And all other referral options… My GP immediately said: “Yes, I’ve tried to refer people with long COVID before, for example to a neurologist or an internist, but all the referrals just come back, so it’s completely pointless.”
LV: Yes, because what I see is that many doctors now do believe that ME is a real disease, but they are still very insecure about how to act. They still think: “It’s something strange, something incomprehensible, something we can’t do anything with.” Whereas we now know that with symptom treatment you can at least relieve some complaints. You can relieve POTS symptoms. You can do pain reduction. You can think along about sleep problems. So there really are things that can improve patients’ quality of life, even though there is no curative treatment yet.
JP: Well, it was a complicated process. I asked for an examination of the blood flow in my head. They said: “Well, we don’t look at that, because we don’t do anything about it anyway.” So that was quite difficult. You know, at some point you’re so sick that if someone says: “Yes, we don’t do anything with that,” you think: “Oh well, then this is it.”
For me that even meant that I had conversations about euthanasia, because I thought: “Well, if this is life and I can’t do anything at all, then I don’t know how to live or keep going.” That’s how sick I was.
Eventually I slowly recovered somewhat, so the euthanasia process has at least been put on hold for now. But yes, the lack of help you get when you ask for it has an enormous impact.
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Have there been treatments that later turned out to be harmful?
GB: Well, at the beginning I tried to rehabilitate with physiotherapy, and the idea was of course to build up gradually. So I started with five minutes of cycling. In hindsight that was already far too much, and I stopped fairly quickly. About a year later I went to a rehabilitation center. The plan was to go three times a week. That just didn’t work at all. From the two times I went, I had symptoms for about two months afterwards.
JP: At the beginning, when I was so sick with encephalitis, I thought: “Well, this is temporary.” Because that’s what I had always learned. Infectious diseases are short but intense, and then you recover. I wanted to rehabilitate as quickly as possible, so I went to a rehabilitation center and there I received graded exercise therapy (GET). I didn’t know at the time that that’s what it was called, or what it meant. I just thought: “I really want to train and get better, so I have to exercise, because that’s how it works.” But it only made me sicker. Every time I went, I had to recover afterwards and had more symptoms.
PH: Yes, in the spring of 2023 I followed a reintegration program at a rehabilitation center, and beforehand I was very hopeful. I had asked for it myself, because at that time it was basically the only option available in the Netherlands. From the start it was very heavy for me. I said that too. I kept it up until the tenth week. Then we said: “I just can’t do this anymore.” The exercises kept getting harder. I did fitness exercises and noticed that where at the beginning I had some progress, I started going backwards, so I could handle less and less weight. In January I saw them again, and for the first time they said: “Yes, in hindsight the program may have been too heavy for you.” Well, by then it was six months later, and I was actually worse than when I started the program.
LV: Because I didn’t know I had ME and thought there was a psychosomatic cause, I sought help from a psychosomatic physiotherapist. And although that physiotherapist helped me a lot with feeling into my body and noticing what was going on, the treatment was still focused on building up, on recovery. That was the idea. And so I kept pushing past my limits. I didn’t know what PEM was, so I didn’t know that you can feel okay in the moment and then feel very bad afterwards, so I didn’t understand that. And that did contribute to the progression of my illness. When I first got sick, I think it was mild ME, and now it’s moderate ME, more on the severe side. So it really progressed.
“The AHRQ revised their initial positive assessment in 2016. The CDC removed recommendations for CBT and GET from its website years ago. The Dutch Health Council, the Belgian High Health Council, and the NICE guidelines have all distanced themselves from GET. They have also adjusted and weakened their advice for CBT, and now all recommend pacing instead of GET.”
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Have you had unpleasant experiences with healthcare that you want to share?
PH: Well, I don’t really have unpleasant experiences, only during that rehabilitation program I started doubting myself a lot. I kept convincing myself that I had to go, that it was good for me, that I had to persevere. But at the same time my symptoms increased. And then you keep thinking: “Yes, but is what I’m doing really wise?” And I wasn’t really supported in that. I just kept hearing: “No, you shouldn’t think too much.” But isn’t it logical that I start thinking when I notice I’m getting symptoms? Well, I was told not to dwell on that too much. I found that unpleasant.
LV: Where I felt most unseen in medicine, in healthcare, was with the insurance doctor. Fortunately not in curative medicine. Yes, I went there for my WIA assessment and I told the insurance doctor that I felt beyond exhausted. At that time I didn’t yet know it was ME, but I did feel that something was really wrong. And then she said to me: “Yes, that’s not possible, because then it would have to be chronic fatigue syndrome, and we don’t recognize that. That doesn’t exist.”
JP: Well, yes, I’ve already told part of it. I also wrote a book about my experiences in healthcare. That’s both from my patient perspective and also: “How did I actually do that as a doctor?” So in that sense I do want to share something. I also wrote a little poem with it. I’ll read it out:
*”After years of theory I learned further in practice… There I go… Every patient a new lesson. Sometimes something small, sometimes something big. But I learned the most when I graduated into being a patient.”*
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What is your opinion about cognitive behavioral therapy (CBT) and graded exercise therapy (GET), which were heavily used for ME?
LV: In recent decades, a lot of emphasis has been placed on the behavioral side when it comes to treatments for ME. The idea was that patients maintained their own fatigue. So cognitive behavioral therapy was given for that, and patients were told to build up activities through graded exercise therapy. And that is actually still in the current guidelines; even in the Netherlands it is still there. And those treatments have of course been extremely harmful for patients, because they made patients stop listening to their bodies. They pushed themselves beyond their limits and stopped taking themselves seriously, because they were repeatedly told that what was happening in their bodies, what they felt, wasn’t real. And that has caused enormous harm to these patients. I think a large part of patients worsened because of these treatments.
JP: Yes, I think both cognitive behavioral therapy and graded exercise therapy for ME are completely outdated and indeed harmful. I do think it’s important that people with these kinds of serious, disruptive illnesses receive psychosocial support. But there is no need to work on the thoughts people have about their illness. In fact, that’s harmful. It costs so much energy. If you start blaming yourself for being sick, that’s the last thing you need.
PH: Well, full emphasis on them is absolutely out of the question, I think. Because there is enough research showing that if we use CBT or graded exercise, it can backfire. So you really shouldn’t do that. Actually, I don’t think this should be done by someone applying CBT within psychiatry. I think it’s much more something for an occupational therapist, where you look together with the patient at what they can handle now and how to distribute that load as well as possible.
GB: Well, I think CBT and GET can in principle be fine treatments for many conditions. But if you notice that it doesn’t work or even works counterproductively, then of course you have to stop. So it’s very strange that it continued, and that there were even studies where the results were interpreted too optimistically or where things were left out just to show people that it worked, while in fact it didn’t work at all.
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Have you treated people with CBT yourself, and how does this differ with PAIZ?
PH: Yes, I’ve treated many people with CBT. I am myself a CBT therapist. But there is a big difference between doing that with someone who has, for example, depression or an anxiety disorder, and someone with a physical illness. That’s not really complicated—there are protocols that make that distinction clear. What I personally find most important is that before you even start treatment, you have several conversations with the patient to explore what exactly is going on and what goals you’re going to set. And you have to agree on those. And if you then start treatment, you have to take into account the patient’s capacity. That’s actually true for every CBT treatment. So I don’t understand, when I read about people who had CBT and were really pushed to keep going… That’s not how it should be at all!
GB: Yes, I was of course a psychiatry resident, and part of that training is psychotherapy, including CBT. So I was trained in it and also treated people, mainly those with anxiety and panic complaints. The big difference, I think, is that with those patients you’re trying to influence an irrational thought. Like: “If I go outside, I’ll die.” Or: “If I do this, something catastrophic will happen.” Whereas with people with a post-infectious illness the thought is: “If I do something, I’ll feel worse.” And that’s simply the truth. That’s not an irrational thought. So you can’t treat that with CBT.
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What do you think is the reason that the biomedical aspects of PAIZ are still so often underexposed, even though we already know more?
LV: What we see very strongly with diseases like ME, in my opinion, is that the discomfort of the doctor leads to the illness being put in the psychosomatic corner. I recognize that myself too—that uncomfortable feeling of having no grip on something. And we see that in history again and again. Every time there are new diseases that doctors don’t yet understand, they get put in the psychological corner. Asthma is an example of that. Stomach ulcers are an example. HIV is an example. And ME is also an example. I think it’s mainly about dealing with discomfort, dealing with not knowing, and being curious. And that’s what I feel is really missing: curiosity about what’s going on here. Instead of: “Oh, I feel uncomfortable and I don’t know, so I’ll put it in that corner.” I think that’s the crux.
PH: I also experienced it myself in my rehabilitation program, where I was simply told: “Well, we don’t really know what’s going on biomedically, so don’t focus too much on that. Let’s just do what we do know.” And that was the psychosocial part. Yes, I find that strange. You focus entirely on that, while there are clear physical complaints. I don’t understand that. I do understand why it happens. It seems like a reflex: “Well, if we don’t know much about that, then let’s focus on this.” My therapists were honest about it, which I appreciated. But I don’t think you can just forget the biomedical side.
JP: I think it’s connected to a lot of prejudices about women in general and the social position of women in general. About 70 to 80% of people with PAIZ are women. And the assumption quickly arises that if women suffer more, then it must be psychological, stress, or hormones. I think people conveniently forget that rheumatism, MS, and other autoimmune diseases are also more common in women. So PAIZ can also partly be explained as autoimmune. That just gets brushed aside.
GB: As I said earlier: if this doesn’t change in medical training, if the mindset of doctors doesn’t change… If there’s a group of persistent psychologists who keep claiming ownership and keep recommending the wrong therapies, I think that’s a big part of the problem. And of course, as I also said, a large part of the patients are simply invisible. You don’t see them in hospitals. First, because there’s no place for them, and second, because for many people it’s simply too exhausting to even attempt it.
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How has your illness changed your view of the medical and scientific world?
PH: Yes, I’ve mainly become very disappointed, because I still cannot understand why there is so little attention for a new disease. And here I’m talking mainly about long COVID, but I think the same has happened with ME. I think: as a doctor you should be very interested, right? What is going on here? And I see that there is very little interest. I mean, there are a few doctors and researchers who do dive into it, but I would think that this should apply to every doctor—that you want to know what’s happening, that your curiosity is sparked, and that you get to work on it. And I hardly see that.
GB: Yes, I’m actually disappointed in that too. I was always very proud to be a doctor and also looked up to the medical profession. Over time that changed somewhat, in the sense that I realized there are kind and empathetic doctors and less empathetic ones. But I still expected that every doctor would do their utmost in terms of knowledge and what they can do for patients. And the fact that this isn’t the case, I find bizarre. And also, when I became ill, I discovered that there is actually a whole world of people with ME who are sick at home, sometimes even gravely ill, and that no one is paying attention to them. I found it shocking to discover that, and I still don’t understand it.
LV: Being ill has really changed me. First of all, I learned what it’s like to be vulnerable. To sit on the other side of the treatment table and experience what it’s like when there are no options for you. How frustrating it is not to be listened to. And I also saw that what I thought was sacred—the medical science—I myself have a PhD—well, that isn’t always sacred. In the case of ME, a lot of research has been done, but it was published in low-ranked journals with a low impact factor, and so I dismissed it as unreliable. But now I see that this is also about how popular a topic is. Whether something ends up in a high-profile journal doesn’t only depend on how good the research is, but also on how popular the subject is. And I think that’s what went wrong with ME: the big journals simply weren’t interested in this research, even when it was solidly conducted.
And besides that, I’ve seen where healthcare fails, and also my own role in it. And that was quite confronting, because you’re part of that system and you believe in it. And as a patient you step outside of it, and then suddenly you see what goes wrong.
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What would you, as a doctor and someone with lived experience, like to see done differently in healthcare?
JP: Yes, I hope as a doctor and as a person that medical problems that occur more often in women than in men will be taken more seriously. Fortunately, there is increasing attention for this nowadays. For example, there is the foundation *Voices for Women*, which brings women’s health more into the spotlight.
PH: What I’ve learned from this is how important it is to simply listen to your patient and stay curious. That already makes such a difference. And even if you can’t do anything as a doctor, that you still take the time to look into it and think along with the patient, instead of saying: “I can’t do anything with this, so go to someone else,” or: “I just can’t help you.”
GB: First of all, I would want to see much more attention for post-infectious disease. Starting in medical education, but also among current doctors. That it becomes a recognized specialty, with real expertise. And that people in general also understand what a serious illness this is. That you can not only get sick from Lyme, COVID, or a Giardia infection, but that there is also a risk that it leaves you with a disease you have to live with for the rest of your life. I think doctors don’t realize that enough right now.
And that something is also found for all the people who are too sick to go to the hospital. That, for example, home teams are created to see what can be done for them.
JP: Yes, as far as I’m concerned, cognitive behavioral therapy and graded exercise therapy for post-acute infectious syndromes should be completely abandoned. Maybe even apologies should be made for the harm they have caused. I think that’s very important.
LV: I think the most important change in how we look at this illness is that we start seeing it as a normal biomedical disease. That ME and long COVID are nothing different from rheumatism or diabetes or any other chronic illness.
We’re still stuck a little bit in that psychosomatic mindset. It has been so persistent. But I mainly hope that young colleagues, my peers and those who come after, will have more opportunities to study this illness. That it will be included more in the curriculum, that they can gain more experience with it in practice. I think that will really help with the visibility of this illness.
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Do you think this experience has made you a better doctor?
GB: Well, I don’t think I’ve become a much better doctor, but maybe more humble and more aware that there is so much we don’t know. And that I don’t know.
LV: I do think I’ve learned what vulnerability is, and also learned that as a doctor your assumptions aren’t always correct. But I also have my own pitfalls. And if I could ever work again—which I really hope—I would also fall into other pitfalls again. So I think it has helped me in part. But whether I’ve really become a better doctor, I don’t know.
JP: Well, theoretically maybe yes, because I’ve become much more aware of all the blind spots in medicine, much more curious, and I have much more practical experience in that respect. Practically speaking, no, because I’m fully disabled. So yes, maybe, but unfortunately not in reality.
PH: I hope so. I really don’t know. I find it difficult to say something about myself. I often think: how did I actually deal with my own patients in the past? Did I also have prejudices or disappoint people in this? And now that I’ve experienced it myself, I can’t imagine doing that in the future. So I hope I can someday really work again as a doctor. And then I hope I’ve learned from this, that I at least have the right approach. But whether that will be the case? Well, the future will tell.
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What would you like to pass on to your fellow doctors and healthcare providers in general?
JP: I hope I can make colleagues more curious about these kinds of illnesses—post-acute infection syndromes. That it’s a much bigger and more serious problem than how seriously it’s been taken so far. Take people with these complaints seriously. Be curious when they point you to information, because they are actually the experts. Look, we doctors learn things from books, but as a patient you really know what it is. And yes, curiosity is very important, I think.
PH: Well, as I said: stay interested in the patient, keep thinking about how I can help this patient with these complaints, despite everything.
GB: That it’s real, that a post-infectious illness destroys lives. And that doctors should be aware of everything. That if tests show no abnormalities, that doesn’t mean someone isn’t very sick. And that maybe it should be a reason to try even harder to help people.
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What would you like to pass on to your fellow patients?
PH: Well, mainly not to give up hope. That someday more treatment options will be found. And that there will also be more understanding. And also, seek support from each other. I myself am in a group with other doctors who have these kinds of complaints, and I find that enormously supportive.
JP: Well, what I hope to pass on to my fellow patients is: above all, keep courage, and realize that it’s ignorance and not ill will. I think doctors generally do their best with the best intentions to provide the best possible care, but unfortunately it doesn’t always go as well as it should.
GB: Yes, hang in there! That’s also what I tell myself, especially at times when I feel very bad. I try to remind myself: there is already a lot of movement, it’s becoming better known, there are more studies. Eventually something will hopefully come that will help us feel at least a little better. And I have to keep hoping and trusting in that, and I think that applies to all patients.
LV: When I think of all my fellow patients, what I most want to pass on is: yes, keep showing yourself, keep talking about this illness, keep sharing with your doctor, with your family, with your loved ones. Because I truly believe that the more people know about this illness, the easier it will become for us. And yes, hang in there. I really hope better times will come, and I also believe they will, though I don’t know when. But yes, together we are strong.
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“Mark Vink, MD, is too severely ill to be interviewed. He spends 24 hours a day in complete darkness and can barely speak. Therefore, he briefly shares his experience with ME and his vision on science and healthcare.”
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MV: My name is Mark Vink and I am a GP and insurance physician who has been bedridden for many years due to severe ME. When I worked as an insurance physician at the GMD, ME was emerging, and I learned that these patients were always tired, seeking secondary gain and benefits, and that you could cure them with cognitive behavioral therapy and exercise therapy. I’ve always been active in sports, so the idea that you could get healthy again through movement appealed to me. Unfortunately, exercise therapy caused a severe relapse, leaving me bedridden for many years, and I’ve since realized that I am one of many.
This therapy is so harmful because you are forced to go beyond your limits. And if you do that with this illness, you suffer severe relapses, from which you don’t recover in the absence of effective medical treatment. A similar severe deterioration after trivial exertion with abnormally slow recovery is currently seen in an estimated 75% of long COVID patients.
Blood tests on myself have shown that I have a severe energy production problem at the cellular level, as I demonstrated in a scientific publication in 2015. You don’t solve that with talking or with exercise. Through my own analyses and scientific publications, it has become clear that there is no scientific basis for the use of cognitive behavioral therapy and exercise therapy for ME.
From a societal and insurance medicine perspective, these therapies are disastrous, because they lead to an increase, not a decrease, in the number of people unable to work. Patients have been saying since 1990 that both therapies are harmful and ineffective. If we had listened to them instead of ridiculing them, we would now have several effective therapies for post-infectious diseases such as ME and long COVID. And that would have saved our society billions. This illustrates how important it is to listen to patients, because they are, after all, the experts by experience who often know much more about a disease than many doctors.
And yes, I too was one of those doctors who knew little or nothing about this illness before I got it myself.
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“Almost all of them described that the process of becoming ill had changed them—not only as people, but also as doctors. Because they themselves were not heard, they promised to listen better to their patients, to be more open-minded about symptoms that don’t fit a clear pattern, to have a deeper understanding of the impact of disability and chronic illness, and to be kinder—both to themselves and to their colleagues and patients.”
*Learning from Doctors with Long COVID*
BMJ, 2012
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References: https://docs.google.com/document/d/1L-0–XTHg4-aVD0K3D7nSWhdDamEBI-BZ0M26nkwz7Q/edit?usp=drivesdk
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Credits:
Direction & editing:
Anil van der Zee
Camera:
Philip Corsius
John Hellenberg
Mark Zanderink
Interview director:
Anja de Loos
Music:
Denis Pavlov Music
The Mountain
Universfield
TremoxBeatz
Cilvarium
Leberchmus
With thanks to:
Gitte Boumeester
Peter Hulshof
Jolien Plantinga
Mark Vink
Laura de Vries
and to all
those who shared
their images
@FU.ME 2025
