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Can positivity cure any disease?

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?

 

Belief.

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…??

 

Control.

“Solo” by Hans van Manen, studio rehearsal.

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..

 

 

Lightning speed.

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!!!!!

 

Groetjes,

 

Anil

 

Editor: Russel Mohan

 

Anil van der Zee

Former dancer, teacher, aspiring choreographer & photographer.
Currently life on hold ; Myalgic Encephalomyelitis.
Blogging out of necessity.

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  • Keren Dibbens-Wyatt

    Well said, Anil

    • Anil van der Zee

      Thank you 🙏

  • Wendy Boutilier

    Sometimes I fear that it is in our own hands since we seem to be the only ones who understand Myalgic Encephalomyelitis. Hence the birth of Advocates. We don’t owe anyone an explanation. This morning there ominous dark clouds forming outside my window then a thin ray of sunlight peeped through. I realized that as hard as it can get at times it is still a gift to grow older.

    • Anil van der Zee

      ❤️❤️🙏

  • Martine Sinemus – v. Kolfschot

    Thank you Anil for this great article. The `smiling´picture of you made me laugh out loud and the `Dalai Lama´ comment is beautiful.

    Thank you for putting my exact thoughts into words. That is amazing. I can identify with your article so completely. I am really curious if these thoughts (your thoughts and as said also mine) are typically Dutch or if other countries/cultures can relate as well.

    I am living in Berlin now for 14 years. And Germany is different. I first got the diagnoses `ME´ when I was about 20 years old (25 years ago). They couldn’t find anything, I was exhausted, had fevers for long periods of time, so it had to be ME. The GP made the diagnosis and gave me the address of a psychologist. There was no internet, I only had the book of Renate Dorrestein.

    In the years after I got a lot of more diagnoses. With 27 years a delayed Sleep phase syndrome was measured in `Het Gelderse Vallei Ziekenhuis´, with 31, my thyroid dysfunction and hashimoto were diagnosed, I happen to be infertile with PCO and Endometriosis, I needed 3 kidney operations after birth of my first son. More and more diagnoses came so I gave up on ME. It was so much easier to tell people I had these ´objective measurable´ diagnoses than having ME. And actually I did not believe in ME even more. The GP had been wrong in my opinion. I had a lot of illnesses, so it was not ME. I still was exhausted (I had better and worse years), bur there was a reason for that.

    Four years ago, after the 23th fertility treatment (IUI, IVF) and 3 miscarriages, my second son was born and after that I got the well-known POTS-problems. They discovered scarves on my heart, my EF was on 43% and in lying my heart beat was 100, in standing 170. I had antibodies alfa 1, beta 1, beta 2, AT1, ET, M3 and M4, but no-one knew the exact meaning of them.

    Then I got a herpes virus 2 years ago. It became septic. So my husband brought me to the immunology of the Charite in Berlin. That was the first time Dr.´s were really interested in my antibodies. I also had some immune defects (mannose bindendes defect, IgG-deficient). I landed with Dr. Scheibenbogen, the almost only ME-Doctor in Germany.

    So I started reading about ME. I kept reading and reading as I didn’t´t want the diagnosis to be truth. It gave me so much harm when I was 20 years old (people being skeptical etc), I didn’t´t want that diagnosis anymore. It was just too hurtful.

    Ok, but to come back to your article ( I am not good in short….): I do have ME, but I do not use the name. I tell people I have an auto-immun disease (what is of course true) and a mitochondrial dysfunction (which was measured a year ago (the Myhill ATP-test), because I do not want all the pain again of people blaming me. I have been sick for over 30 years now (first symptoms with 12 years old). I have been fighting to study, to have work afterwards (moving in with my parents again), with having to give up work permanently, with infertility, with heart disease, with kidney disease, with sleeping disorder. As you know it is a constant fight. And you know what is the most funny: If I do have a better day, I automatically think: `O yeah, NOW I am going to be healthy again.´ It is ridiculous, but that is how I think. So instead of being not positive enough I am actually too positive.

    And than the comments from all those positivity guru´s your describe in your article so well, It feels like so much disgrace, disdain, not being human.

    But: those comments are much bigger from Dutch people than from German people. Even not calling it ME, of course I also hear not to focus to much on it, not reading too much etc. But most of the times those are Dutch. In Germany `suffering´ is much more accepted than in the Netherlands. In Germany it is much more excepted to be chronically ill than in the Netherlands.

    We Dutch people are traders. We are practical. We think in solutions. So, suffering is ok, but there must be a solution. If suffering takes too long it is not accepted anymore. You have to get healthy or die, but living in between is just not ok. It is unconfortable. You can´t be your Dutch self anymore if you don´t have a solution.

    In Germany there is Bach. There is the suffering of Jesus Christ and people are even writing requiems about it. Suffering is an inherent part of life. So actually: in the German School of my sons I get much more support than in the Dutch groups I am involved in here in Berlin ( or actually WAS involved in).

    From German people I almost never get this ´you have to think positive´-attitude. In Germany solutions are not a must. You can have problems without solutions. In the Netherlands that is almost impossible. We (the Dutch) don´t say: ´I do not know´ anymore.

    Although suffering actually sounds for me very calvinistic and for that matter: Dutch, it is only ok, when it doesn’t´t take too long. Women in the Netherlands have to give birth without an epidural, because suffering is there to survive. There is suffering and you survive and that´s it.

    In Germany every woman gets an epidural during birth automatically, as German´s say: why suffer without reason? There is enough `suffering´ in the world, so why not prevent it when possible?

    And that might be the whole clue: In the Netherland long times of suffering is not accepted (I also think it is that way as we (the Dutch) are such a rich and ´equal´country like Sweden). But as we somehow know, suffering is part of life, we do not use a lot of pain medication. Just to show off. Just to tell the world how brave we are.

    But in fact we are not. We close our eyes for the ones suffering for a long time. Pretending they don´t exist. It doesn´t exist.

    In Germany people get much more pain medication. They do not have to show off. They do know suffering exists. They do know that suffering over a long time exist. They do know the world is not fair. And that is something a lot of people `forgot´ in the Netherlands: that the world is just not fair.

    In Germany I only have to drive 10 minutes southwards by car to see the poverty in most Brandenburg houses. A lot of people do not have bathrooms. They never shower! It is something that almost doesn’t´t exist in the Netherlands anymore.

    Well, anyway: in the Netherlands we very strong believe in the makability? (maakbaarheid) of society. And I think that is what your article is about. And I am very curious how people from other countries feel/see this.

    Of course there is a lot in the Netherlands what is very good, I cannot imagine parent nights at school taking almost 3 hours (like here in Germany), before some kind of conclusion/solution is achieved, 🙂 but I really think it is easier to live in Germany with chronic illness than in the Netherlands. Maybe I should just call it ME.

  • Thank you, Anil, another great piece. Since you mention Louise Hay, I want to add that I read her book when I was a teenager with fibromyalgia, and in it, she claims AIDS strikes gay men because they are supposedly vain and don’t want to grow old. Disgusting, heartless and beyond offensive. There is so much victim-blaming behind so-called “positive thinking”.

    • Anil van der Zee

      Yes, Louise Hay and I would not have been friends. That’s for sure. It is beyond offensive, but one can only hope these opinions came from a good place somewhere? She did hurt a lot of people.

    • Maja

      Hey guys, I ve been reading ‘new age’ books for more than 20 years now. Recently I found out it is possible ‘Louise’ was a transgender and probably homosexual himself. Still, there is something good in his-her work.

  • Fiona

    “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.”

    Anil, you are so right! Relentless positivity is simply not realistic if you’re a human being. Tue human experience is made up of so many feelings – sadness, anger, fear, envy, contentment, happiness, joy – that to deny the existence of these feelings is to deny what it means to be human.

    Seven years into my ME experience, and with other chronic conditions to deal with too, I’ve found that realism is the best way to get through life. Some days you’ll feel miserable and unable you to cope. Other days you’ll experience moments of happiness or even joy. Other times you’ll be ‘just okay’. That’s life! ME may rob us of our ability to ‘get out there and live, but we still have to EXIST – and realism is the only helpful way I’ve found to do this.

    • moblet

      The Stockdale Paradox captures this idea quite well.

    • Anil van der Zee

      Indeed. For me the best medicine is acceptance of myself. Whatever that may be. Very cliché but it helps. 🤓

  • Jen Byrd

    This isn’t a disease that can be ‘willed’ away and no one would know this until they came face to face with this disease on a daily basis. We are talking about a disease that attacks and changes our very cells, perhaps even our DNA.

    Maintaining a “positive” attitude around some people is relative to the degree of denial they want to be in. The fact is that they want us to “act” positive so “they” don’t feel uncomfortable being around us. Yes it’s a downer being around someone who is chronically ill but all the inane cliche’s in the world aren’t going to shake it off. When they’ve exhausted all their “infinite wisdom” on how we can cure it, they then become frustrated, impatient and resentful because we’re not trying hard enough to make them feel better.

    That all being said, when the dust settles and all the judgmental noise dies down, we are left to our own devices. I find that this is when we truly find “our” individual positive. It may not fit a social picture of the quest for the perennial smiley mask, but it’s more authentic.

    When we start respecting our body’s needs, that’s a positive. When we begin to care for ourselves more than we care about what people think or expect of us, that’s a positive. When we find the few who do respect the lifestyle decisions we have to make on a daily basis to manage this disease, that’s a positive. When we stop fighting the disease with force of will, and use degrees of acceptance and common sense, that’s a positive.

    In those processes, within those parameters of respecting our physical limitations and managing them sensibly and safely as best we can, whether they work all the time or not, whether we “feel” positive all the time or not, or whether people see it or not, it does build a level of confidence and security and that’s a real positive.
    – Fae Linihan
    (posted on behalf of)

    • Anil van der Zee

      Thank you for posting this. I particularly love this bit:

      “When we start respecting our body’s needs, that’s a positive. When we begin to care for ourselves more than we care about what people think or expect of us, that’s a positive. When we find the few who do respect the lifestyle decisions we have to make on a daily basis to manage this disease, that’s a positive. When we stop fighting the disease with force of will, and use degrees of acceptance and common sense, that’s a positive.”

  • Dr Rohen Kapur

    I think positivity can only get you so far. Before I was diagnosed with this illness, and I knew that I had acquired it, dont know how just had, I thought right lets pretend that nothing is wrong and that Im fine, It lasted 2 days, I tried to go to work, and commuted 45 minutes each way in to a workplace with very minor work, On the second day my best friend informed me that he was near my workplace and that we should meet after work. So we did. and spent time walking around london and biking around. The next day I couldnt move, and I couldnt move for 5 -7 days After that I knew I was ill. I never went back to work, and I never tried to be that kind of positive either. It ends up being more of a delusionary state, And other people have that fixed feeling that you are not ill, but they havent really experienced being bedridden have they after a two day “normal” exercise. I found that my mitochondria had reduced to 60%, of low normal. They havent really improved either as my intake of CoQ10 has had to increase, Im one of the lucky ones, I can get out of the house once or maybe even twice a week, I pay for it though, in aches and pains. I dream of someone finding the cure, because I surely havent figured it out yet, When I was little I wanted to know the cure for psoriasis, and 30 years later I found that it had been shining in the sky every day, ( yes Im basically clear of it ) But you mention grief, and that is possibly the trigger for lots of diseases.

    • Anil van der Zee

      Who knows, all we can maybe. I do feel we are on the right track to finding out what this disease is about. Good times but still a long road ahead of us. Until then the only way to make this disease bearable is love. Love for yourself and from others. But mostly yourself. ❤️

  • Martine Sinemus – v. Kolfschot

    Thank you Anil for this great article. The `smiling´picture of you made me laugh out loud and the `Dalai Lama´ comment is beautiful.

    Thank you for putting my exact thoughts into words. That is amazing. I can identify with your article so completely. I am really curious if these thoughts (your thoughts and as said also mine) are typically Dutch or if other countries/cultures can relate as well.

    I am living in Berlin now for 14 years. And Germany is different. I first got the diagnoses `ME´ when I was about 20 years old (25 years ago). They couldn’t find anything, I was exhausted, had fevers for long periods of time, so it had to be ME. The GP made the diagnosis and gave me the address of a psychologist. There was no internet, I only had the book of Renate Dorrestein.

    In the years after I got a lot of more diagnoses. With 27 years a delayed Sleep phase syndrome was measured in `Het Gelderse Vallei Ziekenhuis´, with 31, my thyroid dysfunction and hashimoto were diagnosed, I happen to be infertile with PCO and Endometriosis, I needed 3 kidney operations after birth of my first son. More and more diagnoses came so I gave up on ME. It was so much easier to tell people I had these ´objective measurable´ diagnoses than having ME. And actually I did not believe in ME even more. The GP had been wrong in my opinion. I had a lot of illnesses, so it was not ME. I still was exhausted (I had better and worse years), bur there was a reason for that.

    Four years ago, after the 23th fertility treatment (IUI, IVF) and 3 miscarriages, my second son was born and after that I got the well-known POTS-problems. They discovered scarves on my heart, my EF was on 43% and in lying my heart beat was 100, in standing 170. I had antibodies alfa 1, beta 1, beta 2, AT1, ET, M3 and M4, but no-one knew the exact meaning of them.

    Then I got a herpes virus 2 years ago. It became septic. So my husband brought me to the immunology of the Charite in Berlin. That was the first time Dr.´s were really interested in my antibodies. I also had some immune defects (mannose bindendes defect, IgG-deficient). I landed with Dr. Scheibenbogen, the almost only ME-Doctor in Germany.

    So I started reading about ME. I kept reading and reading as I didn’t´t want the diagnosis to be truth. It gave me so much harm when I was 20 years old (people being skeptical etc), I didn’t´t want that diagnosis anymore. It was just too hurtful.

    Ok, but to come back to your article ( I am not good in short….): I do have ME, but I do not use the name. I tell people I have an auto-immun disease (what is of course true) and a mitochondrial dysfunction (which was measured a year ago (the Myhill ATP-test), because I do not want all the pain again of people blaming me. I have been sick for over 30 years now (first symptoms with 12 years old). I have been fighting to study, to have work afterwards (moving in with my parents again), with having to give up work permanently, with infertility, with heart disease, with kidney disease, with sleeping disorder. As you know it is a constant fight. And you know what is the most funny: If I do have a better day, I automatically think: `O yeah, NOW I am going to be healthy again.´ It is ridiculous, but that is how I think. So instead of being not positive enough I am actually too positive.

    And than the comments from all those positivity guru´s your describe in your article so well, It feels like so much disgrace, disdain, not being human.

    But: those comments are much bigger from Dutch people than from German people. Even not calling it ME, of course I also hear not to focus to much on it, not reading too much etc. But most of the times those are Dutch. In Germany `suffering´ is much more accepted than in the Netherlands. In Germany it is much more excepted to be chronically ill than in the Netherlands.

    We Dutch people are traders. We are practical. We think in solutions. So, suffering is ok, but there must be a solution. If suffering takes too long it is not accepted anymore. You have to get healthy or die, but living in between is just not ok. It is unconfortable. You can´t be your Dutch self anymore if you don´t have a solution.

    In Germany there is Bach. There is the suffering of Jesus Christ and people are even writing requiems about it. Suffering is an inherent part of life. So actually: in the German School of my sons I get much more support than in the Dutch groups I am involved in here in Berlin ( or actually WAS involved in).

    From German people I almost never get this ´you have to think positive´-attitude. In Germany solutions are not a must. You can have problems without solutions. In the Netherlands that is almost impossible. We (the Dutch) don´t say: ´I do not know´ anymore.

    Although suffering actually sounds for me very calvinistic and for that matter: Dutch, it is only ok, when it doesn’t´t take too long. Women in the Netherlands have to give birth without an epidural, because suffering is there to survive. There is suffering and you survive and that´s it.

    In Germany every woman gets an epidural during birth automatically, as German´s say: why suffer without reason? There is enough `suffering´ in the world, so why not prevent it when possible?

    And that might be the whole clue: In the Netherland long times of suffering is not accepted (I also think it is that way as we (the Dutch) are such a rich and ´equal´country like Sweden). But as we somehow know, suffering is part of life, we do not use a lot of pain medication. Just to show off. Just to tell the world how brave we are.

    But in fact we are not. We close our eyes for the ones suffering for a long time. Pretending they don´t exist. It doesn´t exist.

    In Germany people get much more pain medication. They do not have to show off. They do know suffering exists. They do know that suffering over a long time exist. They do know the world is not fair. And that is something a lot of people `forgot´ in the Netherlands: that the world is just not fair.

    In Germany I only have to drive 10 minutes southwards by car to see the poverty in most Brandenburg houses. A lot of people do not have bathrooms. They never shower! It is something that almost doesn’t´t exist in the Netherlands anymore.

    Well, anyway: in the Netherlands we very strong believe in the makability? (maakbaarheid) of society. And I think that is what your article is about. And I am very curious how people from other countries feel/see this.

    Of course there is a lot in the Netherlands what is very good, I cannot imagine parent nights at school taking almost 3 hours (like here in Germany), before some kind of conclusion/solution is achieved, 🙂 but I really think it is easier to live in Germany with chronic illness than in the Netherlands. Maybe I should just call it ME.

    • Claudia Heath

      Great article. You’d think it was obvious that positive thinking and optimism is no cure to incurable illnesses like ME. and that this article is therefore superfluous. But no. Interesting to see cultural differences in the attitude to illness, too. It seems that people need to find some way to believe that cure is possible even to the point of denying the whole illness for their own sense of security. So reality and science are no obstacle to that belief.

    • Claudia Heath

      Great article. You’d think it was obvious that positive thinking and optimism were no cure to incurable illnesses like ME. and that this article was therefore superfluous. But no. Interesting to see cultural differences in the attitude to illness, too. It seems that people everywhere need to find some way to believe that cure is possible even to the point of denying the whole illness for their own sense of security. So reality and science are no obstacle to that belief. The motives of Crawley Wessley et al are of course, another matter and less benign.

      • Anil van der Zee

        Yeah, it also surprises me that I “need” to be writing these blogs in the first place. But the blaming just keeps coming…

        I’m still not sure what Crawley Wessley et al their motivation is really.

    • Anil van der Zee

      Thank you for your message !!!

  • Orin Ivan Vrkaš

    Great article Anil. I just spoke out about ME in Croatian newspapers and have had to explain over and over this same set of beliefs is not something that can bring my life back. Very well put. Cheers and keep on holding on.

    • Anil van der Zee

      Thanks man. It seems to be hard to understand that this disease, and many others are not curable by thinking differently. Hope you will translate the article so we get to read it?

      • Pi Bee

        I was thinking about this Anil, very good article, definitely we need this in Croatian 🙂

        • Anil van der Zee

          Are there any doctors in Croatia that treat ME patiënts?

          • Pi Bee

            Absolutely zero. Actually, there are none that even diagnose it, well, now this is changing it seems.

          • Anil van der Zee

            Hope things will change….

  • Ginger Bartlett

    operating from positive frames of thinking has its place in ones healthcare mangement regime, but like all modalities has its limitations . I have been a practitioner of energy healing for over 20 years, having took the road of self discovery to manage my chronic CFS illness in the face of mainstream neglect to acknowledge my condition. I have found the knowledge learned to be a valuable resource and I honestly believe that I would not be around today if I had not spend the time attending to ‘ reframing self limiting patterns of thought with their enmeshed reactive states that precipitated exhaustion. The lay term for this process is ‘stress management’ and applying it in ones life certainly does reduce the degree of anxiety triggering is tied up with symtomolody .

    • Anil van der Zee

      I’m happy to hear that you found something that gave you more peace and quiet. Good for you 🙏🙏💪

  • johnnydme

    I don’t know how it is in Europe but I believe in the United States we are constantly fed a diet of the belief that if you do “everything right”=> no smoking, no alcoholism, no gluttony, no stds etc. etc. you Will Not get sick, and practically guaranteed health into your elder years.

    The idea that we could suddenly get sick and die is an idea that horrifies many people. It is very easy to believe that health is something under our control, and something akin to saving for retirement; that is, if you didn’t do it you were irresponsible in the first place.

    Therefore I believe these positivity and mind-over-matter (Lightning Process comes to mind but it wasn’t the first and probably won’t be the last) scams work because people *want* so dearly to believe they have control over their health. Maybe not total control but a great measure.

    It’s sort of like admitting to a crime which you are technically innocent. Happens all the time in literature at least, for instance Richard Wright, Doestoevsky, etc. People would rather believe that they have control of their lives and are *guilty* then that they are innocent and have less control.

    I think one tragic, and criminal aspect to our society’s focus on positivity and the idea of control over health is that it has been exploited most notably by Simon Wessely and their ilk to blame the patient for getting ill, give them harmful “treatment”, and even deny them benefits they may need for necessities of living.

    This leads to the medically, and socially sanctioned, abuse of very ill people who can’t fight back and can’t stand up and walk away from it (many cannot *literally* stand up!).

    I happened across a very thorough post by Jodi Basset’s Hummingbird’s Foundation group that goes into detail why CBT/GET are scientifically wrong and may be of use to many of us.

    Here’s the link:
    http://www.hfme.org/CBT_and_GET/CBT_and_GET_Database.pdf

    Thanks for the blog. It is important not to compound the harm patients with ME have suffered by the neglect of the medical profession and silence of society by blaming the victim … as has often been done, even by people with the disease.

    • Anil van der Zee

      Beautifully written. Thank you. 🙏💪

  • bleeb90

    Thank you for this article! Nothing is more wretched than hearing you’ve thought yourself ill and you ought to be thinking yourself better again. I got ME while I was just starting to enjoy life at the fullest, having almost conquered my depression. It was as if everything I’ve fought for was slipping through my fingers. To this day – a decade later – no comment like “positivity is the key” manages to make me lose my patience so ridiculously fast.
    Not to mention that the whole “keep fighting” comment section is the most lousy commentary anyone could have on being severely ill. You’re right that comments like these can lead to a sense of personal failure, and that is the least any patient needs.
    Groetjes,

    • Anil van der Zee

      ❤️❤️❤️.

  • Michelle Ma Belle

    positivity doesnt reduce ME. I had 2 weeks of incredibly powerful positivity. It sorted out my irritable bowel which vanished, but my ME was no change. Its physical 100%. Any hysteria self pity and endless talk about it is a frustration at trying to move the physical wall and a recognition that if activity is dangerous physically and people are pressurising you to damage yourself-friends relatives doctors- of course you will feel upset, shocked, bestrayed, insulted, dissapointed, disgusted. The negativity comes from this constant arguing…you wouldnt sit with a diabetic arguing sugar is good for you and that they have just become negative/phobic about sugar would you?

  • lise

    Hey Anil,
    Ime taken by your article! Thank you for putting this into words.
    I do think life can get lighter by not focussing on negativity, that counts for all of us, healthy or dealing with illness. But this does not mean negativity is always a “bad” thing. What happens if you keep your anger, grief or anxiety inside???
    Again, thanks for the sincere article! Love Lise

  • Tamara Amrita Powers

    Great article! Thanks so much. I love going to spirituality based fairs and conferences (For me is just for fun), but invariably some “Light worker/Shaman/Crystal Healer” person tells me I would get better if I just believed in myself or followed their path. It’s very disheartening. I’ve had remissions at different times and went for it. Did as much as I possibly could, even some travel with built in rest stops. My disease presents with a lot of Neurological symptoms and even after several years with the same doctor he says, “Think positive”. It makes me want to scream. I keep thinking when???? When will they finally get it?

    • Janet Maclennan

      You know what I think? I reckon doctors study long and hard with the aim of curing illness in people. And when a case comes along that they can’t get a handle on, their frustration can make them blame the patient, much like a poor teacher blames their students for not getting what they say. There have been many diseases (M.S. and T.B., for example) which were written off as being hysterical until techniques such as CAT scanning showed the biological processes involved.
      Indeed, some doctors would say that technology and tests have overridden physicians’ ability to take a proper case history and analyse the person in front of them- in British terms, “computer says no”; that message you get when a set of blood tests come back all looking normal- you must be normal. It’s deeply frustrating, but as more and more findings come out from research around the world, it’s bound to change. What flabbergasts me is that qualified medical staff would countenance carrying out a study into the LP- which sounds, to my limited knowledge, more like a cult than any genuine medical treatment.

  • Beatriz Phoenix

    Thank you 🙂

  • Thank you. In Norway, even doctors promote Lightning Process for ME-patients.

    https://melivet.com/2016/09/02/embarrassing-vogt/

  • Stefan Rijkse

    I have a chronic illness with, among other symptons, severe fatigue comparable to a severe case of ME. There is a more complete scientific knowledge of my disease, not enterily complete though. So that is a difference in explaining to people what the fatigue means and what causes it.

    I’ve also had several experiences with people not understanding the illness and the limitations of severe fatigue. As well as instances where people implied, or straight out told me that my illness must be my own doing or could be cured by positive thinking or ‘wanting it to be cured’. I can relate to what you’re saying in this post when it comes to that.

    People don’t like illnesses and would like to think they can control them and control death or discomfort. If you are a patient with a chronic illness, you are in that sense an afront to this belief. Subconsciously confronting that person with their own fears of disease, pain and death. The chaos and suffering of life is hard to accept.

    I think it’s not them telling you, you can change your fate of disease. It’s them telling themselves they don’t have to be afraid of becoming ill, handicapped or to die. Because you have control over it

    It is extremely painful though to hear those kind of statements especially from friends. Several of my friends said similar things. It’s easy to duck the harsh realities of life in western society. So if a friend you care for becomes ill, you want it to go away in childish ways. But it hurts the patient a lot.

    All the best.

  • Spid

    Today it will be a positive if I get to the end of it alive, tomorrow it might be a positive that I survived today or I ate chocolate who knows. I think the chocolate might win! Every time I succumb and try to think happy thoughts and be well I get worse, I never seem to learn. So tomorrow I will watch films and eat chocolate and be happy being restful and stuff the positive thoughts.

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