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Dancers & CBT/GET-realness

As a dancer I have been surprised by the treatments I’ve received for my disease Myalgic Encephalomyelitis (ME). I want to share my opinion from a dancer’s perspective. What do other professional ballet dancers, who do not suffer from ME, think about the treatments and the current care that’s being offered to ME patients??

 

“When a body moves it’s the most revealing thing, dance for me a minute and i’ll tell you who you are.”

mikhail baryshnikov

 

Switzerland.

Stage rehearsal of Swan Lake, a few days before I got ill. I never actually got to perform this piece.

When I became ill in Switzerland in 2007 my general practitioner (GP) sent me to the hospital. The internist did a full blood work and came to the conclusion I had a Cytomegaloviral infection. Nothing to be worried about. It will pass. Rest and let’s see in a few weeks time. At this time I had already been ill for over a week. And during that week I tried to keep training. But something was off. At the second exercise in the classical training, the plié, I started to get lactic acid as if I had just done a whole ballet. I got light-headed and started to feel feverish. I had been on stage with numerous injuries, colds and even fever, however, this was different. My body just couldn’t handle the exertion, didn’t recover, leaving me to feel as though I was unable to push through.

After a month of being ill and having swollen lymph nodes, a slight fever and a swollen spleen, those symptoms improved. The only thing that didn’t improve was that feverish flu-like feeling that I felt from the beginning. And that I would get worse if I did “too much”. My GP was very clear that I could start thinking about getting back to building up my activity levels. So that’s what I did. I went to the gym and trained with the lowest set of weights but felt that when my heart started racing I reached the “too much” state and I would then worsen. So I decided to listen to my body and that kind of worked for me. I was stable and was even somewhat improving.

Obviously I wanted to get back to work and with that in mind the internist told me to try Graded Exercise Therapy (GET). I started working with a physiotherapist in the hospital. He told me to do less at first. Stop with the fitness and concentrate on the treatment only. Great. At first it was really below my “too much” threshold. It went well. It felt nice to have an expert helping me out. As weeks passed we were slowly building up and got to the point where I clearly passed the “too much” state. My heart was racing, I felt light-headed and had trouble getting home because of the feverish feeling and extremely blurred vision. That stayed for days. According to the therapist this was nothing to worry about and I just needed to hold on, to keep at it. I clearly had my doubts, my body which I normally listened to was telling me otherwise but I followed his instructions. After all he was the expert but I only got worse. The time to recover took longer and he got more frustrated with me questioning him and not being able to do the work. At the end he was lost. He suggested we do a ballet training in the hope that I would find that “click” that would reconnect my body to my mind as ballet was familiar to me. And so we did. I remember him leaning against the wall. Writing or drawing something on a piece of paper. Not really noticing what I was doing, he clearly had no idea what he was doing. The overexertion kicked my butt so hard I got incredibly ill from it and that was basically the last time I saw him.

 

“I still remember during my study when we were taught about ME at the psychosomatic physiotherapy course. I got into a discussion with my teacher because I just didn’t understand why we would use graded exercise therapy (GET) while there was still so little known about ME and that many patients told that the therapy was counter productive. I am very happy that lately there’s more research being done. Hopefully there soon will be a breakthrough. In my opinion many of my colleagues from the para-medical profession place diseases and disorders where things are still unknown much too quickly in the “psychosomatic” corner.”

Dance teacher at a National Ballet Academy, physiotherapist & former dancer.

 

I was lucky that it only took me a few months to get into some form of shape again. But I never really returned to how I was before the GET. The “too much” came much quicker. I unfortunately could only do less, while I was doing pretty alright before this treatment. My GP suggested I should try Cognitive Behavioural Therapy (CBT). A way of approaching your symptoms differently. It could help. It would be less intense. I decided to work with someone my partner was being treated by. To be honest it was great talking with someone who took my disease, which was by now kind of chronic Cytomegaloviral infection, seriously. I enjoyed it. She also suggested that I could keep doing my fitness that I started again. But I I first needed to do less. But as time passed I was again told to slowly build up my activities. I was told to add a minute of walking every week. But it couldn’t be a walk that involved going to the supermarket. It had to be a separate walk….So some days I was going to the gym and I obviously needed food, so grocery shopping had to be done. And on top of that I needed to do an extra set of minutes walking, with 3 stairs included. Needless to say I slowly got worse again. After my GET experience I stopped with the CBT. The ignoring of my symptoms didn’t work. For some reasons I got worse when I overexerted myself, and the therapies offered did not hold to their promises. I always doubted myself though. Did I stop too early like the therapist said? Should I have kept going and have ignored my symptoms? I decided to stop listening to others and get back to my initial gut feeling as a dancer and listen to my body. This turned out to be the right decision. I stabilised and started improving a bit again.

 

Amsterdam

In 2009 I received the diagnosis ME at a specialised centre in Amsterdam. They did several tests where suddenly my “too much” state was objectified and had a name. Post Exertional Malaise (PEM) which is a severe delayed worsening of symptoms after a minor exertion. This is composed of a flu-like sensation that worsens substantially and lasts for days, weeks or even months. Not only did I get my diagnosis, but it turned out there were many other patients experiencing the same thing. About 17 million worldwide…(Now for those who’ve read my previous blog  you know that I really dislike the name CFS. It suggests this disease it about chronic exhaustion. When this is only just one of the disabling symptoms. The hallmark of this disease it PEM, where you get ill after any over exertion.)

My GP at that time suggested that I try a new CBT trial, I was surprised as I had told her it didn’t work out for me before. But she said that it also works for cancer patients so it should give it a go. This one was according to her, very good. At the same time I just had all my tests done by a specialist in Belgium. It was very costly but he approached this disease from a biomedical direction so after my disappointment with CBT and GET I was ready to give it a try. I was skeptical to say the least but if you never shoot you will always miss. Right? I did go for that intake with the CBT trial. You always hear people from the biopsychosocial (BPS) model say that they can’t control the variables at other institutes, that theirs is best. In Switzerland I didn’t receive a treatment specially designed for ME. So maybe this was in fact different? The nurse explained to me what it was. It sounded exactly what I had experienced in Switzerland plus I was not allowed to continue with my treatment in Belgium.

Kinesiophobia??!!

I decided to continue with Belgium. He treated my gut. It improved dramatically. Could eat normal again. And my overall stamina improved as well. From doing 1 thing a day I was able to do 3 or even 4. A year later I started teaching 2 ½ hours per week at the Amsterdam school of the Arts. Classical ballet. Amazing. I did crash for the rest of the week until the next week but I could build it up a bit. For me after being treated with antivirals and antibiotics and improving that much it was clear to me that I was suffering from a physical disease. This was not a behavioural issue and it needed better research. Sadly I relapsed in 2013 after a heavy stomach flu I got from a friend and I slowly became housebound and still am.

 

“I think it’s ridiculous the way patients are being treated. Doctors should also really listen to patients, observe how they react after these treatments…. With my current knowledge I wouldn’t do any of those treatments cause I knew I would become worse and I would more listen to my body than to the doctor’s advice….Normally doctors should educate themselves with the recent medical literature right?
If I wouldn’t have known about the dangers of these treatments I would’ve followed the doctor’s advice.”

Ballet master & former dancer.

 

PACE = SPACE!!

The (Trudie) Chadler model of CFS. Main investigator of the PACE-trial. Is that me???

In 2013 I was introduced to a certain trial called the PACE-trial. I heard of pacing. ME patients use it to stay within their limits so that’s what I thought it was about. Pacing. A guy on YouTube was talking about how “PACE” had done him and many patients wrong. I thought it was probably just a patient overreacting by coming up with some conspiracy theory. I did check a bit more. But wasn’t too bothered about it. A few weeks later I asked a friend, who is a doctor, why am I experiencing this much lactic acid. I’ve had it since the beginning so what was it? He suggested it was deconditioning like the PACE trial suggested. It was odd, the lactic acid came from deconditioning while I was in top shape as a dancer? From one day to another? It just didn’t add up.

The PACE-trial is a £ 5 million publicly-funded clinical trial of exercise and cognitive behavioural therapy for “CFS”. Over 600 participants. The results were amazing. The Lancet, one of the leading medical journals, published the results: 60% of the patients improved after CBT and GET. 20% completely recovered. I was shocked. This must be true as it’s published in THE Lancet, but is that even possible. People with my disease can’t build up their activity because of the PEM. But here it clearly stated these amazing results. Not only did this happen in the UK with PACE. The same claims were made by Dutch researchers like Hans Knoop and Gijs Blijenberg from the the Nijmeegse Kenniscentrum voor Chronische Vermoeidheid. They are apparently good friends and colleagues of the PACE-trial authors. The website of the NKCV also mentions they are focusing on getting back to work. So how is that possible? How can all these big institutes claim that they can cure people from CFS.

The biopsychosocial model CFS

The model suggests that after an initial infection;

  • The illness is just perpetuated by wrong cognitions (false illness beliefs)
  • Patients can recover if they overcome their fear of activity (kinesiophobia)
  • Stop overreacting (catastrophizing)
  • PEM is just a logical way of your body reacting because you’re out of shape (deconditioning)
  • Change your cognitions, build up your activity levels and you’re golden. Because you do not suffer from a biological illness.

“Our studies clearly show that dynamic exercise like walking or jogging exacerbates symptoms associated with ME/CFS”

J. Mark VanNess, PH.D.

Now this model is interesting. Of course if you get ill you will obviously be resting more. You will automatically do less. Of course you will be focusing more on your bodily symptoms. Don’t we all when we are in bed with the flu?? And of course when with this illness you become ill after exertion you will become more careful. Maybe at times too careful but anxiety is definitely the wrong word, and deconditioning is any disease’s enemy. But the real issue with this model is that they are suggesting that there is no underlying disease mechanism, and that your wrong cognitions are the main reason for what’s holding you back from full recovery. Now in the 90’s this was maybe more applicable as there was less known about the disease but in 2011? Dr J. Mark VanNess, Professor of Health, Exercise & Sport Sciences at the University of the Pacific, Stockton, California has a different point of view regarding the  “fear” of activity .

Another big problem is that all these trials rely on criteria where PEM is not mandatory. Although it’s the hallmark of this disease. Without PEM you just don’t have ME. You will be extremely fatigued or exhausted. But without the PEM it’s a different mechanism and you would be able to build up your activity levels. So if you use criteria where PEM is optional you’re basically doing a clinical drug trial with for example a cardiovascular disease where a large number of patients do not actually have a cardiovascular disease. Wouldn’t that create a huge medical disaster?? Headlines would be everywhere. Yet with this disease with the conflation of chronic fatigue and chronic fatigue syndrome (ME) nobody notices this. Honestly nobody gives a fudge about it because of the fatigue label. Everyone is fatigued. So who cares. Very few people (clinicians) know that ME is not about being fatigued but about becoming ill after an exertion. The past 6 months I have had 5 clinicians at my bed. None of them have ever heard of PEM. The whole thing is a huge problem…I could try to explain the complete story of the PACE-trial. But I would advise you to read this great article in the New York Times written by dr. David Tuller and Julie Rehmeyer. For the people who prefer to keep reading I can tell you that after a 5 year battle, under court order the PACE-trial authors had to release their raw data of this controversial study, where data was manipulated to get better results. The initial report publication stated that 60 % improved patients and 20% recovered in the Lancet. However, it turned out to just be a mere 20% improved and only 7% recovered after a reanalysis of the original protocol. Ouch. Apparently I was right?

There is the conflation of chronic fatigue and chronic fatigue syndrome, where in chronic fatigue PEM is not mandatory, with clinical trials where subjective measures are in general the only measures as objective measures fail. Plus more often than not these are trials which are unblinded. You end up with trials that are completely meaningless because of the entry criteria based solely on fatigue and extremely open to bias. Jonathan Edwards, Professor Emeritus of Connective Tissue Medicine at University College London (UCL) criticizes the PACE team, according to him they show a disregard for the principles of science. A must read. Now if and only if these trials would match the experience of the patients, that would be great. But it doesn’t. So what the….??!!

 

“The reality is surrealistic to me as if we were back to the middle ages where people were burned because of being different or gifted. Despite the medical advances ME seems to be treated with archaic point of view with no consideration for the patient.”

Dancer.

 

Sorry, what?!?

My own experience so far is that I have not been listened to by the GP, the internist, the physiotherapist, psychotherapist and also many others in the years that followed. Everyone ignored my problem with PEM. Or is not aware of it. Linking this disease only to chronic fatigue. Advising a professional dancer to maybe move a bit. I mean really? To a dancer? Never thought of that. Thank you…So I started to wonder what the reason could be that certain medical professionals and scientists miss clues that seem so obvious to me as a dancer. When I look at someone I look at how they move. I’m trained to do so. It’s something I probably do unconsciously. From the way someone grabs a pen, to the way a foot is turned in, to the way people react when I talk after a little twitch in their movements after a certain word; small details we dancers are trained to observe and control as we need to be able to replicate those movements. It’s not only about the exterior. We need to be able to convey an emotion that can change by a slight move of a hand, the shoulder or a quick change in timing. Dance is in my opinion one of the most primitive forms of art and being, a language of the body of reading and writing. It wires you in a way that’s pretty unique. It’s a wisdom that you can’t be taught from books. You need, in my opinion a perfect understanding of the body and mind connection. Besides a few exceptions of clinicians that treat ME as a proper medical condition, which I sadly can count on one hand. I never felt that the clinicians from the (BPS) department or rather the CBT/GET proponents were aware of their own physical doings. Although they are pretending to be specialised in the body and mind connection. But in my opinion if they needed to replicate certain dance moves they would miss a lot of details, let alone being able to replicate it at all. So no wonder they would not be able to actually listen to patients and understand them, both verbally and visually. I’ve noticed that the less aware and quirky they physically are the more they tend to promote or believe in the CBT/GET model. It actually has nothing to do with someone being a good dancer, it has to do with body awareness or rather an overall awareness of yourself.

 

I want to make it very clear that this is not some anti psychology or psychiatry rant. I think as with any chronic illness it is important to get (optional) psychological support. But with the current model for ME, people are reluctant seek help because of the disappointment and damage they can suffer from a therapist with the “PACE-model” in mind. Promising a cure and blaming either the patient, spouse or parent for not recovering from “CFS”. Instead of a supportive form of counseling, people get a directive form of CBT which is completely absurd and it is a really big issue. Thankfully there are some amazing psychologist and psychiatrists working very hard to solve this problem. Just to name a few:

  • Carolyn Wilshire, Senior Lecturer at the School Psychology at Victoria University of Wellington.
  • Leonard Jason is a professor of psychology at DePaul University in Chicago
  • Professor James Coyne is an American psychologist and professor of psychology at the University of Pennsylvania.

All 3 of them are vocal critics of the PACE trial and the current CBT /GET model. And the way ME patients are being treated by a large portion of their colleagues. How is it possible to have 3 of these amazing level headed, logical thinking top scientist. And on the other side. Some really, how can I put this nicely, very weird group of people that have a hard time getting to see that 1+1= 2. If I could ever combine my skills I developed as a dancer with science. I would love to study the BPS scientists and clinicians. Just see how they dance. Maybe some of them love to dance in their spare time, but how body aware are these people. As a teacher of mine once said “loving dance doesn’t always mean that dance will love you back”. I’m hoping it would explain a lot about why these scientists and clinicians think the way they think. And yes this study would only consist of subjective measures and outcomes!!!

 

The motivation theory.

My biggest question is, what drives these people. The PACE-trial proponents and those scientists that promote similar types of treatments. According to Wilshire et al. The recovery claims are not justified by the data. Which is absolutely true. Not with PACE nor with any other of those CBT/GET trials. There are numerous patient surveys and studies that show that people do not benefit from these therapies. To be exact. Many of the ME patients conditions worsen. Some beyond repair. According to a study by dr. Mark Vink a Dutch family physician 82.2% CBT and 79.8% GET participants worsened and disability doubled during PACE. We haven’t seen those numbers in the newspapers?? Until now the critics were those crazy patients, like myself, writing these crazy blogs, like this one. Where the scientist from the BPS model would complain about the fact that there is no teamwork or bond between scientists and patients. But look at this, this is freaking teamwork. An open letter to Psychological Medicine signed by over 100 scientist and patient groups…together. Intended “To protect patients from ineffective and possibly harmful treatments”. The time that only patients complain about the bad science produced by BPS are over. So what is their excuse now?

So with all this information, with all the recent biomedical research starting to show clear disease mechanisms which confirms that it’s not a good idea to push through and ignore your symptoms, what are these people on?? How can they ignore the data that shows null results, ignoring patients’ testimonies and surveys and complaints from top scientists. Besides health insurers that may be interested in their work because of the cost effectiveness aspect (yup a little conspiracy theory realness). Who in the patient community is really interested in their work? If you ask patients behind closed doors if they want more CBT and GET the answer will be a big NO. So for whom are they working?

The other day there was a Dutch CBT/GET study released for MS. After 12 sessions the patients reported through subjective measures an improvement in fatigue. Great. After these session though the effect slowly lessened. The condition training didn’t really work. On top of that it was considered too hard to keep doing it. Yet with ME there is ALWAYS an improvement with these type of trials. Although MS patients do not experience that particular PEM like ME patients. which is very strange to say the least. But anyways they are considering a follow up study where they will add a few CBT sessions to see if the effects lasts longer, a few so called “booster sessions”.

Esther Crawley, a professor in child health at the university of Bristol in the United Kingdom, already referred to CBT for ME as a kind of pill you can take. By the sound of those booster sessions it seems like it. I imagine a kind of CBT pill you can swallow or a powder that you snort…?? Maybe these BPS scientists who are involved with ME snort themselves a line of CBT powder in the morning to boost their own false cognitions to make it seem that these therapies are “so effective“?? These therapies for ME do not work. Their science is in my opinion and experience complete nonsense….

CBT is a great tool to help you cope with a disease. But with ME and many other diseases where there is no clear cause is known, it’s more often than not touted as a possible cure. I mean MS, among many other diseases, was once considered nothing more than psychogenic. MS was considered a female hysteria which could be “cured” as well. According to psychologist Hans Eysenck, who also manipulated the data, CBT could even prevent cancer or extend the lives of cancer patients…uh really???

What bothers me the most is that we see so many CBT or GET studies for ME. So much money is invested in them. It’s always with a new formula. A new and improved version, like those washing detergent commercials on TV that we all know is a load of BS. I just wish that the money would be spend on proper biomedical research. And CBT for ME would be focused on supporting the patients with dealing with an awful, shitty life altering disease. At the moment CBT is becoming a plague. Once the BPS gets a hold of a disease and starts spreading those “CBT is so effective” kind studies like you see with the washing detergent commercial on TV, funding for biomedical research is then slowed down. Cause CBT works!! In the short term CBT seems to be very cost-effective. In the long term diseases are not solved and cost the state a lot more money. Anyway, I think my biggest question still remains. What is driving these people??

I have been trying to communicate with some of these researchers. I seriously would love to hear the opinions of these people about their work in an open conversation. But like the PACE-trial authors, you often get these ‘none answers,’ completely avoiding answering questions or they start blaming you for being too critical. Esther Crawley is replicating a dutch online CBT and GET clinical trial for kids called FITNET. David Tuller wrote a few amazing blogs about it: FITNET1, FITNET2, FITNET3.  It also covers some Dutch studies with some serious flaws in their work. So I decided to contact Sanne Nijhof, a researcher from the Dutch version of FITNET. I wanted to hear their side of the story. I tried to get some answers about the blogs written by David Tuller but she was, although very friendly, avoiding the questions. I will blog about this at a later stage. If you visit their website. Their own interviews, the testimonies from the children, it is only about fatigue and feeling tired. The hallmark of the disease. Post Exertional Malaise is nowhere to be found. As an ME patient, I also don’t recognise myself in these stories. If this was really about ME. The site and all the testimonies would mention or describe PEM as the most important issue. But it doesn’t. It doesn’t mean that these therapies can’t help patients with (extreme) chronic fatigue. But to call it ME/CVS or as they call it CVS is not right. It really isn’t the same.

 

“I can only imagine how patient you have to be and how difficult  your situation is and I mean patient towards peoples “ignorance” of your illness…”

Dancer

 

Placebo

A real explanation could be that as CBT is actually nothing more than a placebo effect. It needs to be positively promoted otherwise it will lose it’s “effectiveness”. So all these scientists are maybe doing nothing more than marketing or selling CBT & GET like those shiney people you see in those commercials?? Both Professor Simon Wessely, a British psychiatrist based at King’s College London and kind of the godfather of the current CBT and GET model for ME, along with Dr. Hans Knoop a Dutch clinical psychologist and friend/colleague of the PACE-trial authors state that ME patients react worse to the placebo effect of CBT compared to other diseases probably because of their expectations and skepticism. Now that’s all great and all, but the effect, even if only measured subjectively are temporary. They show no improvement objectively or a cure. So all these millions of dollars, pounds and euros and promotion of these treatments are for a small ineffective placebo effect??!! Which in the case of ME patients apparently doesn’t really work?? On top of that, with other medical conditions such as M.S, Lupus or Rheumatoid Arthritis there are no claims of a cure like there is with ME. If hospitals would (again) start promoting a cure through CBT with these diseases, wouldn’t those patients be as skeptical and their expectations as low as well?? According to a source at the UMC St Radboud, the former workplace of Knoop, he doesn’t really believe anymore in the old model for ME and that he does think there is more the matter with this disease physically and that he doesn’t think that it is as easily solved as the PACE-trial authors, Knoop and his colleagues have been suggesting. But if word got out the whole media would be on his back. The whole system that was so carefully built up would come crashing down. And gosh, he just got promoted to professor of evidence-based psychological and behavioral interventions for medical conditions and somatic symptoms at the AMC in Amsterdam. I mean holy fudge! after what is known about PACE and FITNET and all his other work he was promoted to professor in  “evidence based” How?? Speechless….There is nothing evidence based about his work besides the fact that there is by now enough evidence his work is full of post-hoc manipulating of data to get better results and conflation as well as confusion. That’s not science. Right?

My only motivation is to get better. I want things to improve and move forward. Anything, I don’t understand. What seems counter-intuitive from what I experienced with CBT and GET as a patient and as a dancer, I want it to be explained. If you look for example at the Open Medicine Foundation lead by Ron Davis, Professor of Biochemistry & Genetics, and Director of the Stanford Genome Technology Center at Stanford University, the data will be open. As a researcher you can start working with it; the more, the merrier. Maybe someone will find something. There is nothing to hide. Yet when you try to do the same with, for example PACE or FITNET you more often than not get a door slammed in your face and it’s then called harassment or “vexatious”. Now I can understand that scientists are not especially keen on giving information to a patient, especially not a crazy one like me. I get that. But again the time that it were only the patients criticizing this type of science is over. After PACE trying to hide their data and dr. David Tuller started writing about it, the whole scientific community started raising their eyebrows and asking questions. What is going on here? This was not about ME anymore. This was about bad science, about hiding and covering up data. Could it be that these patients were right all along??

 

Body & mind dualist

It is a very serious and frustrating matter. An estimated 17 million sufferers worldwide of whom 25% homebound, 85 % can’t even work part-time. There is no proper treatment. The amount suffering is beyond belief. People die because of M.E. The numbers of either euthanasia or (assisted) suicide because of the unbearable pain and suffering is sadly high. This CGT/GET model stems from the 90’s, with a strong lobby in psychiatry hindering any progress. Promoting more CBT and GET, as well as absorbing all the funds. Every time one of those researchers endorses trails like this and pushes for more “needed research” into CBT and GET they are in fact derailing progress into biomedical research and adding to the suffering of all those patients who are in desperate need for change. To be honest I’m pretty fed up with my own situation as it is right now. Bed bound in dark. With the progress the Netherlands is not making. That internationally things are moving forward yet we are still dominated by friends of the PACE-trial authors. The only thing patients want is a cure. No more “coping” through CBT. No more worsening through GET but a cure. If people from the BPS really want to help patients, they would take a step back and let the biomedical scientists do the work.

In May I started an awareness campaign through (performance) art. Obviously because of my background many dancers joined. I was surprised about the feedback I’ve gotten from them. It was exactly mirroring my own thoughts about this subject. If you read the quotes there is only one conclusion. They are obviously also shocked by the ignorance and the disrespect towards patiënts, but more so shocked by the fact that patiënts are not being heard and are being taught to not listen to their bodies when this is completely against what we dancers would advise. Especially when a majority of the patients voice a (permanent) severe worsening of symptoms. Yes we are not all scientists with a medical degree, but we know our bodies and how to listen to it better than a bunch of those scientists combined. I can’t believe that my life is being controlled by a flawed and dated hypothesis from the 90’s that consideres me as a former professional ballet dancer, a body and mind dualist, by scientist that are clearly stuck in their own heads with no comparable body awareness whatsoever!! Who is the dualist here???

 

“I’m stunned that in 2017 there can still be so much suffering, a sea of ignorance and even worse: burying heads in the sand by the medical world as soon as they are faced with the boundaries of their knowledge in such familiar territory. But new voices are emerging, and are coming, giving others more faith in thinking outside the box in order to find new / different solutions than the classic “psychological” explanations. Building on the latest knowledge is the way out, through the exuberant sharing of expert opinions and clear studies. The groundbreaking work on public opinion, initiated and supported by patients such as Anil van der Zee, is necessary and gives a deep insight into symptoms and the clearly negative influence of CBT and GET on the evolution of the disease for anyone who wants to hear it. I do think that the younger generation of doctors are more open-minded, most probably because easier access to information, which is promising for the future.” 

Specialist  in Physical medicine and rehabilitation, Sports Medicine Physician and former dancer

 

To close this blog or rather rant, there is one important thing that I still wanted to mention. With all this talk about being a dancer and knowing how a body should feel. You really don’t need to be a highly trained dancer to know what is happening with your body in dealing with this disease. The PEM crashes and other symptoms are so in your face and severe. There is no escaping from it. It will rob you of your life and dreams regardless of how hard you try to resist.

I hope this blog made a little bit of sense. It was highly unscientific, subjective and biased. Very much like the science ME patients have had to endure for decades and sadly are still putting up with. I’m fed up of waiting, it’s literally suffocating. Let’s fight for change. Please be loud!!!

 

Rant over.

 

Groetjes,

Anil van der Zee

 

 

Now let’s dance!!!!!

 

Editor: Russel Mohan

Anil van der Zee

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

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