As long as I have been suffering from my illness I’ve read and have also had some people tell me that the cause and course of my disease rests in some way in my own hands. I have always found that remark quite hurtful but most of all, unfounded. As there is still a lot which remains unclear about Myalgic Encephalomyelitis (ME) which could be the reason why people might come to such a conclusion, whilst there are those who go even as far as claiming the same thing about a horrible disease like cancer. But is that really true? Are we patients really in control? What does the literature say? And what effect do these claims have on people who are struck by diseases in general?
In my 10 years that where I have been ill, I have experienced quite a few people commenting on my illness in a way that has linked or related its cause to my personality. The first one which I remember well, was a guy in the theatre whom I knew had contracted HIV and who was aware that I became ill after a CMV infection. For some reason, I felt that he would understand. I absolutely adored my job. There was no way I wanted to take a break or no way that I felt that I was fed up with it. I was having a great time.
But he asked me something like; “Anil, do you still want to dance?” as if I had suddenly lost the passion and drive to dance, that I was depressed or suffering from a burn out. That question really did hurt me. It was clear from that moment on that although I felt like a walking zombie people apparently didn’t see much wrong with me and I would have more people suggest things like that to me. Later on, I had people tell me I might probably need to just maybe flip a switch or not forget the power of the mind. Maybe the death of my partner (who passed away 3 years after me becoming ill) was the cause of my disease. A doctor suggested the passing of my partner to be the reason for which I was unable to recover. A blockage if you will.
Just recently, a “friend” and “therapist” gave me some dreaded, unsolicited advice. She suggested, clearly assuming that I never did, that I try therapy because of my personal history. She asked if dancing was a substitute for receiving love (because apparently I never did either) and if I would be able to feel love for myself without relying on others. Holy cow!! To top it off, she suggested that with a different mindset, I could “start living again”, i.e. recover. That I should take matters into my own hands. We all know that the unsolicited-advice giver is, more often than not, the one with the actual issues. Still, this egregious flood of assumptions can really be damaging and hurtful.
In my previous blog I wrote about how ME has been plagued by a certain science that promotes the idea that by thinking differently it is within one’s abilities to potentially cure oneself. We also now know that this research is slowly being debunked all over the place. While researching for that blog I stumbled upon psychologist Hans Eysenck who claimed that CBT could prevent cancer or extend the lives of cancer patients. As it turned out he manipulated data much like had been done in the PACE-trial to get better results. But the idea that it’s possible has remained.
There are no incurable diseases, only incurable people.
Bernie S. Siegel, M.D., 1986
Another lady who has recently passed away, called Louise Hay, claimed she cured her cancer with a regiment of forgiveness, therapy, nutrition, reflexology and occasional enemas, refusing to undergo any regular/conventional treatment. According to her, there was no doctor left who could confirm this improbable story, but she swears it is true…It was also not the first time that people have told me that they feel you can cure any disease with a positive outlook; that actually happened quite often.
Honestly it makes me quite angry when claims are made that even terminal cancer patients hold matters in their own hands. As little is known about ME, I can still understand that people might assume things that are a bit off or farfetched. But making those assumptions about a terminal illness like cancer!!! Have you really checked those facts?? So I decided to look at some of the literature that has been written about cancer in relation to the sufferer’s attitude.
What does it say?
According to cancer.org a few studies do show a link between personality and cancer. But these studies were according to experts, smaller, not well designed or not very well controlled.
In 2010 there was a big and well-designed study conducted with about 59,548 Swedish (1974–1999) and Finnish (1976–2004) participants. The aim of the study was to analyze the association of personality traits extraversion and neuroticism with regards to the risk of cancer. The researchers identified 4,631 cancer cases among the participants in a timeframe of maximum 30 years follow-up. Results showed no significant association between these traits and they did not support the hypothesis that extraversion and neuroticism are direct risk factors for getting or surviving cancer.
people are expected to have a positive outlook and fight against the disease. It creates the idea that you are in control
As for staying positive or emotional well-being, in 2007 researchers looked at a study of head and neck cancer with a 1000 participants to find out whether such traits led to survival in a large sample of patients. The study showed that emotional well-being had no influence whatsoever on cancer growth or one’s length of life.
As for living longer through psychotherapy, David Spiegel conducted a study in 1989 with 86 participants diagnosed with metastatic breast cancer. The 1 year intervention consisted of weekly supportive group therapy that employed self-hypnosis for pain treatment. They found a difference in survival with participants who were in the support group but other researchers who did similar studies did not.
In 2004 there was a systematic review of randomized trials with more than 1000 participants that examined the effectiveness of psychosocial intervention in cancer patients in terms of survival prolongation. The conclusion was that psychosocial intervention does not prolong survival from cancer. In 2007 there was a critical review of the all the previous studies. They found that none of the randomized controlled trials showed any meaningful effects of psychotherapy on cancer survival and also in which psychotherapy was not confounded with medical care.
To top it off in 2007 David Spiegel replicated his study from 1989 to see if intensive group therapy extended the survival time of women with metastatic breast cancer. It showed that the earlier finding that longer survival was associated with supportive-expressive group therapy was not replicated.
So in my view, it looks like the big and well designed studies do not really support the fact that psychotherapy, personality traits or positivity have any effect on length of life, tumor growth or any of the other things that people might claim.
Did they give up? Were they not fighting hard enough? Not positive enough?
I read an amazing opinion piece by a Dutch surgeon of oncology Schelto Kruijff. He wrote about how he worries about the potential harm of applying battle language to the experience of having cancer, that people are expected to have a positive outlook and fight against the disease. It creates the idea that you are in control of your own disease or destiny by not giving up. But what does that say about the 40.000 people in the Netherlands who do indeed die of cancer every year. Did they give up? Were they not fighting hard enough? Not positive enough?
What about diseases that have more in common with ME. I’m thinking of multiple sclerosis, lupus, rheumatoid arthritis or Parkinson’s disease. We are still in the preliminary phases of ME research but auto-immunity is something that might be the case. So let’s assume that stance for a moment. Do we feel that we can control these diseases by curing them through positivity? And if people’s health does decline is that something which lies in their own hands? Are they also not fighting hard enough or not being positive enough?
What about ME?
ME is a bit difficult. We don’t really know exactly what triggers it. There are clues though; many people get ill after an infection and we also don’t really know what perpetuates it. There’s no doubt in my mind this is a physical disease. But still, regarding a disease where things are still largely unknown, you step into a territory where anything goes. On top of that there is no easy diagnostic test, so that lack can add a lot of confusion as well.
Several studies have shown that indeed a lot of ME patients are misdiagnosed. In Australia they did a study where 38% of the patients diagnosed by a primary care physician didn’t actually meet the Chronic Fatigue Syndrome (CFS) (FUKUDA) or the ME (ICC) criteria. In the UK about 40% of the patients who were referred to a specialist CFS service by a primary care physician didn’t actually meet the CFS criteria. That’s a lot. It doesn’t mean they can’t be very ill. On the contrary but being very ill does not automatically equal ME
With that in mind it’s not surprising that you hear of people who had ME and recovered through treatments that are in my opinion not in line with what the disease mechanism is about and some of the treatments are to be honest even rather quite questionable. As there is still a lot which remains unclear about this disease I’m keeping an open mind but it definitely crosses my mind that some of these patients are in fact part of the group that were actually misdiagnosed??
For the non-pharmacological treatments, we have the famous CBT/GET for ME. With these clinical trials we already know they use criteria where the hallmark of this disease Post-Exertional Malaise (PEM) is not even mandatory. And if it is, PEM is often considered part of the kinesiophobia we are all suffering from. Other less famous “treatments” or rather trainings are Lightning Process, Amygdala Retraining Program, Mickel Therapy, Reverse Therapy, Dynamic Neural Retraining System.
And although these “therapies” are considered to be different they all try to achieve the same thing in my opinion. They try to retrain your thoughts, body, mind or soul with the ultimate goal that you either heal or cure yourself by turning your negatives into positives. In the case of ME, you can turn off a certain chronic “arrousement” state that we are apparently in and we can let our body and mind reset. Now we might be in some sort of state of constant arousement of the tired wired state. But there is very little proof, like with the research with cancer or CBT/GET for ME that it actually works, that it is the cause of ME. All I can say is maybe…??
I compare it a bit to my own experiences. When you are working on a new choreography that you have to learn for a performance you do so by just practicing the steps until you can dream them. And you do this so when it’s premiere night your body can focus on the arts, on the feelings. Forget about the technique or your thoughts. Let it flow. Let it become your second nature. I remember when I once entered the stage for a solo performance and I had a blackout. I did not remember the steps at all. There was no music yet, complete silence, audience eyes focused on me and I had no freaking clue what to do. But then the music starts and your body remembers. What you’ve trained your body to do takes over. Luckily that always happened.
There’s one problem though. Once the performances and rehearsals stop you do start to forget the steps and that “let it flow” feeling. It might be there in parts, there still might be a lot left that you do remember, you can try to keep up with it yourself. But the real taking over that you experience when the music starts kind of vanishes. Even if you are a full-time dancer you forget “it”. It’s a temporary solution. Much like you see with CBT/GET in the long term follow up (LTFU) studies and I guess that’s what happens with the other types of training as well.
I’m someone who is quite happy with both my darker side and my positive side. I’m someone who enjoys black humor, I’m quite happy when it rains and really enjoy a little bitching and moaning with a smile. I also do laugh a lot. I think people consider me as someone you can have a lot of fun with. But I’m definitely not someone that feels everything is or needs to be beautiful, sparkly, shiny and fun. I also like things edgy, dark and a bit mysterious. To be honest I’m super happy with it. I’m also a strong believer that too much positivity will work against you as too much negativity will work against you as well. But both have their purpose and needs their time and space..
I think high positivity correlates with positive illusion, which effectively distorts reality and can really hurt someone when, for example starting a new treatment. The deception of yet another failed psychosocial intervention can really do a lot of damage. We are being taught everywhere to always be positive. I find that a little scary.
For example the Lightning Process (LP) is a 3 day course. It has been developed from osteopathy, life coaching and neuro-linguistic programming where you pay a shit load of money to get yourself cured or improved from a lot of diseases. For some ME patients it apparently already works on the first day?!? Raving reviews by some and it created a lot of expectations of positivity. But again the studies about misdiagnosis do cross my mind. In Norway a young boy of 13 years old with ME tried to commit suicide because of LP. He felt guilty that he didn’t manage to cure himself. I think that’s horrible.
And although this is from a young boy in the adult world this happens too. Because the newspapers state amazing results. CBT/GET works, LP works. You can get better. It’s a matter of motivation and belief. People feel guilty that they don’t improve with either these therapies or their own positive mindset and start blaming themselves, their loves ones are blaming them, their doctors, work, the unemployment office. The amount of (self)blame is so high, suicidal ideation or tentamen suicidii are not uncommon because of these practices. Can we please make it stop??
Interestingly enough, Esther Crawley a Professor in Child Health at the University of Bristol in the United Kingdom, who is a proponent of CBT/GET for “Chronic Fatigue Syndrome” conducted a trial called the SMILE trial which was an LP-trial for children with CFS, and although she is pretty easygoing with publishing questionable studies, the SMILE trial only got published many years later. So what was holding her back? Contrary to the initial positive media coverage, a closer look at the study revealed that it was an even bigger disaster than the other behavioral interventions for “CFS”. It’s reassuring to know that it is now officially illegal in Norway to advertise the Lighting Process as a legitimate treatment for ME.
Strategic defensive optimistic pessimists.
For the treatments part, being positive in general and if it does have an influence on the outcome, I had a big remission for 2 ½ years. I still couldn’t do a lot compared to someone healthy but it was a huge improvement. A year later I even started teaching ballet, 2 classes per week at the Amsterdam school of Arts. It was after I got treated by professor de Meirleir, a specialist in Belgium. The reviews that I heard about him were mixed. He’s very expensive and the communication wasn’t all that warm when I visited him. I was very skeptical and on top of it my partner had just passed away in 2010 two months prior to me starting the treatment. I was in the process of mourning. Throughout that period I was definitely neither in a positive nor a good place yet the treatment worked remarkably well. So yes as with the cancer studies mentioned above I’m not convinced that these things really matter.
I guess you’re wondering if I’m promoting negativity or living a gloomy, miserable life. Go back to our adolescence, wear gothic clothes and too much eyeliner and say fuck you to the whole world. To be honest, although I don’t do too much sparkly and shiny and the recent years have been very tough, and of course I have my moments. It’s not often that I’m very down or really depressed. Obviously during my time of mourning in 2010 I was not great but for the rest it’s rather stable. I think this is mostly down to just pure luck. But who knows maybe a small part it has to do with the fact that right now I don’t mind my dark side. At times I really feel it’s important to be there because my body and mind need it. I need to “de-press” or rather unpress. I see both sides as a good thing and just don’t give it much attention because of that. Ok, so maybe I’m just in complete denial, and in this case that’s actually quite uh…..positive???….
Let it be.
I’m very aware that mental support or having a positive outlook may help in coping with a debilitating illness, potentially create a better quality of life. Not to lose touch with your positive self when the going gets tough. I myself think it’s important to seek help when needed. I did for example when my partner died as a preventive measure. My only problem is that I don’t believe that these treatments or having a positive outlook can do all kinds of things like reduce cancer or stop this disease from coming back or prevent you from getting a disease in the first place, and the well designed big studies in the case of cancer don’t really support these claims either. Just like CBT/GET does not cure ME, in my opinion it needs a bio-medical “fix”. And honestly I also don’t really get why ME should always be different from any of the other medical conditions. In my opinion it’s not.
I think that believing that we can control illness and death appeals to us from somewhere deeper within. It gives us a sense of security. Something to hold on to but it seems to be nothing more than a belief. If this belief works for you please keep doing it, but once a belief becomes the truth in science like the PACE-trial, FITNET, SMILE or FINE without actual data to back it up, things can get very ugly. When people start blaming each other for not choosing positivity as their possible tool of healing or a cure when actually those claims are really not proven or they are in fact, rather disproven. When loved ones start motivating patients to push through and be positive. But in reality, they might need the opposite to survive, and are subsequently, with all good intentions, creating more loneliness and despair. We are actually doing more harm than good in the name of “positivity”. I think we desperately need to change that. These diseases are already hard enough to endure.
For anyone who is dealing with a disabling disease either mentally or physically or both. Don’t let anyone tell you that you are not trying hard enough, that you are not fighting. Because we all know that any chronic life altering shitty disease is a damn hard job; everyday is a brave fight that in my opinion demands a lot of respect. You are just simply doing an amazing job. It’s something to be very proud of. A deep (imaginary) ballet bow to you!!!!!
Editor: Russel Mohan