By David Tuller, DrPH
*This is a crowdfunding month for Trial By Error. Donations (tax-deductible to US tax-payers) go to the University of Calinfornia, Berkeley, to support the project. The link to the crowdfunding campaign is here: https://crowdfund.berkeley.edu/project/42302
**********
Anil van der Zee and I first connected in 2016, when he invited me to Amsterdam to give a talk at a screening of Ryan Prior’s documentary about his own illness, Forgotten Plague. Anil was already home-bound from ME; he organized that event from his bed. We didn’t meet during that visit–he wasn’t able to have visitors. But I’ve been to Amsterdam many times since, and Anil and I have been able to get together in person a few times–but just for ten or fifteen minutes.
Anil was a dancer before he got sick. Now he makes art through his images and words. I am constantly amazed at how active and engaged he manages to be with his phone as his instrument. Here is The Prison of M.E., a haunting video he posted for World ME Awareness Day on Sunday, May 12th (two days ago), about life as a severel patient. Below the video, I have posted the text of an online interview in which I asked Anil about why he made the film, what he’d like people to know about severe ME, and how being unable to use his body makes him feel part of himself has been amputated.
**********
DT: Why did you want to make this video?
The reason I made this video is to raise more awareness for severe ME and also because of the lack of care people with ME, especially severe ME, receive.
You know, when I was less severely affected, I could still go to my GP or elsewhere to communicate with healthcare providers. Once I became severe and visiting doctors became impossible, we moved on to contact via phone, and when that became too strenuous, communication happened via email.
When even that became too heavy, and I couldn’t really communicate with my friends either, and I had no healthcare providers who knew what severe ME really entailed, it was a very helpless feeling of desperately needing help but not receiving anything.
My GP actually distanced herself the more I became severe instead of the other way around. She was really clueless about what she had to do, and when things became really heavy, she even ordered psychiatric crisis services, even though there was no indication of mental health issues whatsoever. That was quite a traumatic time and experience. There was such a disconnect with what was happening in my house, with my health, and what I was experiencing with the disease and the “care” or the lack thereof I received. In these moments, I really wanted to scream and explain to everyone what was needed and what I was going through, but I was simply unable to do so.
So now that I’m able to carefully film a bit again, I wanted to make the invisible visible, so to speak. Obviously, to reach healthcare providers but the general public as a whole, as many people with ME receive skepticism from their friends and loved ones as well.
DT: What would you like people to know most of all about having ME?
I want people to understand that ME is not about chronic fatigue. You know, there has always been a focus on fatigue and graded activity or exercise and that we can cure people from “chronic fatigue, while for me PEM and orthostatic intolerance are my most debilitating issues. As a professional dancer, I wanted to resume my work as quickly as possible, and PEM was the main obstacle in doing so. It wasn’t “fatigue” that was holding me back but the fact that exercising and exceeding a certain threshold of slight exertion would make me more ill for days or weeks.
The fact that I’m bedbound is because I can’t sit or stand upright for very long; it’s not because of being fatigued. I was fatigued after a week of working hard, but that’s not what I experience with ME. Obviously, there’s an extreme flu-like exhaustion with ME, but for me, that’s an energy impairment, not fatigue.
Furthermore, because of the PEM, exertion can have detrimental consequences, and I wish we would move away from wanting to incorporate graded activity/exercise in treating or managing ME and PEM. I think we were slowly getting there before the pandemic, but now with long-COVID, some new researchers feel we need to reinvent that wheel again. I think with this condition, focusing on stability is where it’s at instead of needing to build up your activity levels.
As a dancer, I, of course, learned to really listen to my body (and mind), and it was clear that this approach wasn’t working. I never really understood why I had to ignore these signals of what my body was telling me, and it was a frustrating experience to not be heard. I felt I was treated like someone who never exercised in their lives. So I urge everyone to listen to the experience experts to avoid any iatrogenic harm, including researchers focused on exercise science.
In fact, I think we need to be a lot more careful about exercise in general for people with ME (and other infectious related chronic illnesses) and PEM. I’m not aware of any data that shows that people with ME who keep on exercising actually do better in the long term than those who don’t. Frankly, I wouldn’t be surprised if those who pace without focusing on exercise perse do better on the long-term than those who keep exercising.
Finally, I would want to make clear that ME is not a mental health condition. By saying that, I do not mean that one is more or less serious than the other, but it’s just stating a fact, and that they need to be treated differently. You know, for example, with depression or anxiety, activating people can be very helpful, but with ME and PEM, that approach has caused a lot of harm.
DT: How do you maintain a sense of hope for the future?
I was “lucky” that in 2014 when I had my “coming out” as a patient, things slowly started to change. That coming out was after my first 3 months that I spent in the dark, and I felt I needed to share my experience as a dancer. I did read a bit about CBT/GET, and which I personally had a bad experience with, but I hadn’t read up on all the details about it. In 2015 there was the IOM [US Institute of Medicine] report, which was in my opinion an important step to make PEM a hallmark symptom of ME again.
However, your 3 extensive blogs about the PACE-trial were a real revelation to me. It really explained to me that the trials and hallelujah articles about CBT/GET and graded activity/exercise being helpful where it made me more ill were absolutely nonsense. I felt vindicated, and it helped me understand the science a lot better as well. I can’t thank you enough for that. These positive developments have continued where science has slowly been moving away from CBT/GET and where biomedical research has become the focus again.
We see the same happening in the Netherlands. After a citizen initiative, a new Health Council was reinstated, which was more critical towards CBT and distanced themselves from GET, and there’s now a government-funded biomedical research program of about 28 million euros spread over 10 years. Also, they are working on new guidelines. Unfortunately, the CBT/GET proponents are well-represented on the guidelines committee, and also, the biomedical research program is, with the Netherlands being so BPS/CBT/GET-minded, not without its issues, but things are moving forward. We are in a paradigm shift, and there’s no way of stopping it.
With all these developments I’m therefore cautiously hopeful for the future. I’m not sure how much I will benefit from the positive effects myself, but I don’t want future generations to experience a similar type of neglect and maltreatment that I myself, and millions of my fellow people with ME, have experienced.
DT: What would be the first dance you would do if you could dance again?
That’s an interesting question. I’ve certainly fantasized about it a lot, but if it were professionally, then the answer is that I’m simply too old for that. You know, when I share an old dance video of myself, people sometimes tell me that they look forward to seeing me dance like that again. Unfortunately, a dance career is short, and I would have retired around 35, I think. I became ill a few months before turning 29, and I’m now 45. I’m a grandfather in professional dancing years. So dancing like that is simply not possible anymore. I think the fact that we have wasted so many years on finding proper treatments for this disease has ruined many promising athletic careers. It’s quite sad, really. It makes it even more sinister (is that the correct word?) that the main treatments were based on graded activity/exercise.
My main focus after a dancing career was becoming a choreographer, but you also develop a movement vocabulary from an early age. I have a huge gap of not being able to move myself at all. So I’m a bit worried about how that will work out. But if I were to dance again, then it would be in creating dance pieces myself. I’ve also developed a love for photography and making films, so dance films are definitely high on my list as well. I will probably make some old man dance movies of myself. For the rest I would love to take a ballet class again, even if I can’t do anything of it anymore and I also really look really forward improvising and dancing myself in a trance anywhere really. I also can’t wait to dance in the club or at an electronic dance festival again. I really miss that a lot! 😉😜
DT: How do you find expressing your creativity through your phone and images instead of through your body?
Honestly, I feel like I’m missing a part of myself. Like it’s been amputated. (I hope that’s the right word). My “livelihood” consisted of movement. From the age of 6, I danced alongside judo, tennis, and swimming. As a professional, I trained or worked from 10 am till 6 pm, six days a week, and I was constantly in motion, even during my spare time. The language of the body is what I know best.
I started writing blogs in 2017 about the absurdity surrounding this disease, especially regarding CBT/GET and my experience with rehab. Not because I loved to do it, but because I felt it was necessary. I have no medical or scientific background, yet I’ve been involved in many scientific discussions about this disease. It’s rather ridiculous, really. That’s not what I should be doing. Now, after a few years of getting worse again, I feel the need to explain about severe ME once more, to educate to a certain extent, this time through imagery. However, everything I do, whether writing, photographing, filming, or editing, comes with the potential cost of crashes and worsening.
On the plus side, I got into photography in 2013 right before I relapsed from mild to housebound, and I got into filming in 2021. Even though I feel limited in my abilities to film, it does feel very reminiscent of dance, of making choreographies, creating and lighting the scenes, timing it to music. I enjoy it in a way, but I wish I could do so much more. If it were up to me, I would reshoot many scenes, compose shots to perfection, but I simply don’t have the energy to do so. I just place the camera or tripod where I think the shot will fit. I can’t spend loads of time fixing it as it will make me crash. I have to let go of creating that “perfect” shot. I lost the ability to move and exert myself freely without consequences. It’s frustrating, but I can’t do much about it. So yeah, I feel like a part of me is missing. Yes, like it’s been amputated.