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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 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 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 and collaborator of the PACE trial 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 that him 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 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

IMPORTANT: I’m in need of some urgent help, please consider supporting my crowdfunding effort   

 

 

Now let’s dance!!!!!

 

Editor: Russel Mohan

Anil van der Zee
Former dancer, teacher, aspiring choreographer & photographer.
Currently life on hold ; Myalgic Encephalomyelitis.
Blogging out of necessity.
  • Janet Dafoe

    This is just so good, Anil! I read it to Ron. This is what he said right after his exclamations of upset over your story and the whole PEM/GET ridiculousness and tragedy. “These “doctors” that continue to believe in CBT/GET for ME/CFS call themselves scientists. However, the job of a scientist is to make observations, propose a hypothesis, and then attempt to disprove it. In the case of GET, it’s rather easy to disprove it. Failure to look at the data and continuing to hang on the their original hypothesis disqualifies them from being called scientists.”

    • Erik Johnson

      “Failure to look at the data and continuing to hang on the their original hypothesis disqualifies them from being called scientists.”

      I couldn’t agree more!

    • Anil van der Zee

      Janet and of course Ron. Thank you for saying that. I whole heartily agree that it’s very peculiar that these scientists never doubt their science. If you even can call it science. Trials are already a success before they’ve even started. Patients are mostly to blame for anything that doesn’t work. The question remains. What drives these people?? What motivates them to keep pushing this paradigm that is hurting people….

  • brian

    Anil,

    this blog is astonishingly good! It voices the concerns of the vast majority of ME patients in a complete and eloquent manner. I
    have been thinking for some time that the only way to raise public awareness of ME and have given the societal priority it needs is through
    the arts. We need to grip and entertain the public, to make them laugh and delivery our message through that vehicle.

    In short I think we need to put the public into the experience of a patient and have them see this lunacy ‘from the inside’.

    I am a person who loved to dance (for fun) and enjoyed the theatre as audience member – but a creative person rather than a professional. I began a concept for an ME ‘Rock Opera’ some time ago that is slowly taking shape. I would love to get a professional peformer invovled in that process and move it forwards.

    Who knows, one well timed show in each of Amsterdam, London and Berlin could do wonders.

    Brian

    • Anil van der Zee

      Thank you Brian, did you get to see my previous project? You’re more than welcome to dedicate some of your art to it.

      http://anilvanderzee.com/undauerme-art2cureme-2017/

    • Jen

      Brian, I have a background in film production if that helps and you need a brainstorming buddy/feedback/random friendly person. 🙂

      • brian

        That sounds great Jen. I’ve done some brainstorming in an ME gruop to get ideas for music with useful lyrics and am in the process of getting thoughts written down for the objec tives (ie the messages we want to send) and the storyboard.

        My thoughts at this point are to produce a roughly edited flashvideo / handdrawn cartoon video that could be used both as a ‘Guerilla Marketing’ tool and way to promote the idea of the show.

        I’ll contact you on FB rather than hijack Anil’s thread.

  • KMC528

    I also got the nonsense that walking to the grocery and back was not exercise; if I needed groceries, I should get those first and then do my required walk. He didn’t want to believe that if I get groceries I don’t have the energy to do a second walk.
    I much preferred the advice of someone who is a CFS specialist, who informed me that in charting my daily activity, I needed to log everything, even the few feet from the bed to the toilet. Standing at the sink to wash dishes is standing. Walking to the grocery is walking. Dusting or mopping is exercise.

    • Anil van der Zee

      Did it help you in anyway?? Did it give you a better overview of what you can handle during the day??? The latter sounds rather good.

  • “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.”

    This is the first time I’ve read of someone talking about this from a body awareness level and it is so validating. Thank you! I have a real interest in the low level of people inhabiting their bodies being linked to how divorced we are from the earth. Abuse the earth, abuse the body. The destruction of both is sometimes life-threatening and always suffering-inducing. Not to mention dumb and egotistical and blind. I am so sick of these people having so much power. I do believe the tide is turning, though.

    • Anil van der Zee

      Yes, very interesting analogy. And you are absolutely right that the tide is turning. They are also changing their tune. They have to. It’s great to see. Thank you for your comment.

  • Auctis

    Very eloquent and I think most of your statements the vast majority of us would agree with. One thing I especially agree with, and wrote a blog last year about, is the use of poor definitions to create, probably placebo effects, with groups of people where few actually have the disease. If this were done with any other disease (say classing heart palpitations as heart attacks or warts as skin cancer, it would be scandalous and immediately seen to be ridiculous).

    Against almost any condition or disease, with the exception of mild things like seasonal allergies or acne, the number of people with “chronic fatigue”** will dwarf the numbers of those who have the actual disease.

    If the PACE authors and those who support the “Beliefs maintain a state of illness” had to test their ideas on a cohort of people with true ME, using the ICC criteria, the CCC, or any that included 24-48 hour delayed post exertion relapse their ideas would fail in dramatic fashion–likely severely harming some of the participants. (**To be absolutely clear I have NOTHING against people with “chronic fatigue” as some of these authors have publicly suggested in media; but equating them to Myalgic Encephalomyelitis in scientific studies harms them and harms us)

    My guess as to their motivations is that they make a lot of money pushing their ideas to the insurance industry and are able to push the “what if I’m wrong” and “could I be contributing to a moral evil” questions to the far side of their minds when they are cashing huge paychecks. Some people have suggested it might be sexism, or an outlet for a superiority complex: “look at all those weak-willed people- they saw something on the internet and now think they’re deathly ill”

    Whatever the reason(s) this irrational and dogmatic insistence on finding a explanation in the patient’s flawed beliefs has caused incalculable and irreparable harm. For many it hasnt been only added physical and/or added mental suffering, they are literally no longer here to, one day, live life…

    ________________

    A second point I want to wholly second is just how much social pressure to “push hard”, “ignore your body” “fight through the pain” these “models” put on us sick people right when we are most vulnerable to misinformation and catastrophically damaging our health–near the beginning of becoming ill. I know for me this was the case as well, absolutely. I’d bet this is more the norm than exception…

    • Anil van der Zee

      Thank you for your comment. Super well written. You voiced a few points or concerns I didn’t express. Only time will tell what motivates them. It’s sad though. The lives wasted and lost. Obviously mine as well and the generations still to come….. It desperately needs to change.

  • Anil, very well written. As a kinesthetic person, see if this is true. We evaluate truth with our gut. In engels there is an expression ‘do a gut check’. GET does not pass the gut check for any person who has experienced severe ME.

    Hope that you get back your energy to dance through the whole Cari Lekebusch DJ set.

    It seems that Jesse Stoff’s books are absent from the present online ME world. He wrote two books that capture his thoughts on treatment of severe chronic diseases. The first was called Chronic Fatigue Syndrome, the hidden epidemic (1988, 1990, 1992). The second was called the Prostate Miracle (2000). His approach is the same, improve immune system performance, just in cancer treatment there is a race between cancer and the patient’s immune system improvements.

    https://www.amazon.com/Jesse-A.-Stoff/e/B001HCU9LK/ref=sr_tc_2_0?qid=1497839376&sr=1-2-ent

    Patient results from 1998. During the 1990s, he found Ai/E10, which is central to his treatments still. See page 10 for individual patient descriptions. Many are listed as having CFS.
    http://www.aie10.com/pdfs/SolticeStudy1_08.pdf

    Summary of above.
    https://cdn.shopify.com/s/files/1/0984/8312/files/107_patient_individual_results.pdf?4295451560896263818

    We have a ‘fan page’ as his work is widely ignored, but he seems to focus on cancer as he has been treating patients to remission of ME for so long.
    https://www.protact.ca/pages/cancer

    All the best!

    • Anil van der Zee

      Thank you for message. I will try look at it later. Thank you for sharing.

  • Fiona

    “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??”

    Hilarious! Thank you Anil for such a well-written and comprehensive blog.

    • Anil van der Zee

      Thank you Fiona, at least that part made you laugh 😀😀😀.

      • Fiona

        It sure did – and with this life-altering disease, we have to take our laughs wherever we can get them 😁

  • Miriam Lilian

    Very well written. I have not finished yet. It is indeed very long but I would not know where to shorten.

    I stopped at the phrase “What is driving these people?”

    That’s what I bother my head about and I cannot find a satisfying answer.

    I am not a “fan” of conspiracy theory. Is their work really driven by the influence of insurance companies and pharmaceutical industries? Do they really believe their own theories? Do they continue even though they know they are wrong just to not convey publicly that their own work is proven wrong because they do not want to destroy their life time work, so to say their motives are narcisstic.

    For decades we are confronted with CBT und GET therapies and it did not work. A new formula of CBT and GET will not make it either.

    It is not so difficult to understand actually.

    I often think I would like to sit with “those” psychiatrist who promote CBT and GET and have a science and logical based conversation which is not getting personal! I don’t want to argue personally just science driven! And so should their counter arguments be too. A critical analysis of PACE without any personal attack should be possible.

    The thing is I don’t really get what is driving these people.

    • Anil van der Zee

      It’s difficult to get answers. It is a bubble that’s very hard to break. Both for the patients and scientists from outside to get in as it is for the scientists involved to free themselves of. I do think they are stuck in their own bubble and heads. Too much analysing of the psyche in general. They’ve lost touch with reality I guess?
      What drives these people? I don’t know. If it is the patient that they are working for, they are doing a very bad job.

      • CatEye

        No conspiracy about the ties between certain BPS proponents and UNUM Provident …

        • Anil van der Zee

          Yeah, it’s sadly true. I didn’t want to go into it too much but they are there…

  • CatEye

    You nailed it Anil.

    What makes your blogpost (among lots of other things) so very special and unique is the fact that dancers are perhaps the most “body-mind aware”, “non-kinesiophobic” people around.

    To tell You how to experience your body is like telling a Formule1 car racer how to drive an ordinary car in a one way suburban street.

    You should be educating CBT & GET therapists instead of the other way around.
    But please, make them do a little dance first 😉.

    • Anil van der Zee

      Dear Cateye, that was so spot on and super well written. Isn’t all super bizarre. Thank you for this amazing comment haha. Awesome ❤️

  • ענת

    thanks for this, i tried pushing through for the last 14 years of illness,
    and it got worse and worse. i wish i had all the information from doctors before all the damage was done…
    i didnt have the self believe to trust my instinct and body, and i should have.
    its inspiring the way you listend to yourself. thanks for sharing

    • Anil van der Zee

      Thank you but I wish I would’ve known sooner as well. Always felt it had a big impact on the progress of the disease.

  • foggy_westerner

    Football,volleyball,handball all my life-my ears almost fell off when dr asked “do u know difference between lactic acid and sore muscles”?

    • Anil van der Zee

      Oh my. Yes my jaw is still not in place after certain comments if physicians. Thanks for sharing this one. 👍👍

    • jA

      it’s so clear, the difference. i’ve biked a 100K race and the way i felt after that is so profoundly different from the way i feel fatigue now. times when i’ve been well enough to safely exercise very gently and had *ordinary* sore muscles–it feels so good to have ordinary sore muscles! it feels like accomplishment, like hope. and the soreness itself? not that big of a deal. please.

      whereas PEM–it’s just indescribable how much worse it is, how different.

      • Anil van der Zee

        It’s very different. Weird that it’s a big issue to explain it. Or to get clinicians to understand it.

      • Helen

        JA ~ I agree! The difference between ordinary sore muscles and PEM is unmistakable from the inside!
        I had to laugh at your thought that it feels like an accomplishment to have ordinary sore muscles ~ it does ~ so exciting! I feel the same when I find I’m actually tired ~ wow ~ I’ve managed to do enough to be tired! Yes!
        I have friends who sometimes ask if I need to stop as they don’t want to make me tired, and seem genuinely puzzled when I laugh and tell them it’s very hard to make me tired; I can’t do enough to get tired but I can easily do enough to make me feel very ill!

        • Anil van der Zee

          So true. I rarely get tired as well. The times I actually yawn because of tiredness doesn’t happen often. It’s a great feeling to be tired. I miss that indeed. Great you mentioned that.

  • Willo Withywindle

    I need to say I am sorry. Sorry that this disease has robbed you of the outward expression of your Self through your art. The loss must be unbearable at times. I contracted it many years ago and it has curtailed much of my freedom but my creativity is primarily internal through my imagination. Yet so often I want to stretch and crack my body out of this constraining cocoon. I do at times but my muscles do not experience this as an attempt at liberation but of dominance and they protest. Sometimes, rarely now, I will ‘dance’ to music as it is a primal demand to release and experience the joy of being incarnate. It is all but a shuffle and the waving of my arms and the PEM follows as wake follows a boat, but for that short time I command my reality. How magnified must this be for you!

    My answer to why they perpetuate the folly of GET and the PACE fraud upon us is because the medical profession is that, not a healing profession. It is power ‘over’ not power ‘with’ us. There is no offer of care for people in this world, anywhere. We get what we take or are given. If there were care there would still be convalescent homes, peaceful places set in nature where we could rest and recuperate, fully supported when illness first expressed itself. There that conversation with the body and mind would take place. It would be that information which would be heeded. Much would repair itself.
    So our experience is a symptom of plight of all humanity, fractured, dispossessed. It is not the whole that is honoured. It is not how the bits fit together that is rewarded, but the bits themselves. We suffer from this particularly with M.E. GET and PACE are the only bits on the table. Better them than nothing they think. Remove them and what is left? Our naked suffering. Then where will they hide? What shield will they use to deflect the reality of our shattered lives, our endless loss? Is that what they believe their responsibility is anymore, to see, to care, or just to fix with things from a prescribed list?
    The medical profession is really only individual people. They wish to do what they are allowed to do and to feel efficacious. We are their worst nightmare. We make them feel powerless. Giving us directive healing strategies even if ultimately useless and destructive puts the ball back in our court. It is then up to US and they can wipe their hands of us in relief. This is why I believe any change will only come from our vociferous refusal to accept such sleight of hand.

    Your article was a skirmish in this battle and I thank you Anilღ

    • Thank you for your comment had to laugh because of the shuffle and the arms up. Hope I will be able to manage that again some day.

      I do think that indeed the medical world is designed to offer a treatment even when it’s not helping. When it’s actually doing more harm than good. That’s where the BPS and MUPS are at their best. Offering “care”

      Thank you so much for your amazing answer.

      Greetings,

      Anil

  • AndyPR

    As a martial artist with 20 years of training experience, who also happens to be an ME patient, the concept that “I have decided to limit myself physically and I just need to be convinced to think differently” is just so much garbage it’s unbelievable. The only people I see who consistently display false illness beliefs are those BPS advocates who have created so much misery and suffering for many sick people.

    I have been stopped from practicing an art that I love, no longer can I go along to weekend long courses, pushing my body, ending each day tired but happy and recovering overnight – the best I can manage now is to direct two 90 minute classes a week where the challenge for me is to stay standing for that long. The rest of the week is recovering from those classes.

    The BPS pseudoscientists need to stop experimenting on vulnerable sick patients, their pet theories have no basis in reality.

    • Anil van der Zee

      Hi Andy,

      I’m really sorry that you had to stop practicing martial arts. As a kid I was doubting to either pursue dancing or martial arts, I was a judoka and thought of switching to karate. I ended up being a dancer but my plan was to start martial arts after my career. So I feel your pain.

      Let’s hope that our fight right now will help the next generations. Thank you for your your comment. I like it. But I will put a unlike for the fact that we can’t practice our sports anymore and the time that is wasted by the BPS.

      • AndyPR

        Thanks Anil, I completely agree that we need to fight for the next generations of patients. We need to do all we can, within our energy limits, to stop the BPS religion from ruining the lives of newly affected patients.

        For myself, I’m hopeful that rituximab (or similar) is found to be a genuine treatment but I’m waiting until, at least, the stage 3 trials in Norway are complete – if it worked for me then this would be my way of getting perhaps 10 years of active working life back.

        • Anil van der Zee

          I think we are all eagerly awaiting the results of that trial. It will be something if it is effective for a subgroups of patients. A real validation of the fact that there is a disease mechanism and a possible way out of this mess. You can teach me some kicks and stuff. 🤘

  • Jen

    This is such an accurate description of what so many of us are going through! I can relate to so much here, though I worked professionally in film production when I got sick and dancing was more of a hobby for me. I was active and vibrant, living life to the full when the ME struck. I just want treatments that assist my healing and wellbeing. I don’t think it’s too much to ask for patients to not want treatment that makes them worse! GET made me very sick too, still not fully recovered. CBT just made me very depressed. I’ve tried so hard to get well making many changes in lifestyle and diet, CBT was patronising and just made me feel like it was all my fault and that I wasn’t trying hard enough, when the truth was that I was already pushing myself far too hard – as do most with a life and beloved career to get back to. Both GET and CBT had a negative effect on my health and wellbeing. This article explains my experience with PEM so well! Listening to my body is the main thing that’s helped me stabilise too. It’s just great to read. Your rant is the same I have inside me and you helped me to release all the frustration I have with this devastating illness. I’ve had a bit of a cry. But it’s a good cry, one of being understood, one yearning for change and for science to win over psychobabble. Just for our voices to be heard and not ignored. It’s sometimes hard to express with brain fog, but you have done it so beautifully and eloquently. So many of us struggle with PEM and yet this is not addressed at all with most mainstream medicine. Great article thanks! 😍

    • Anil van der Zee

      Hi Jen,

      Thank for your comment and sharing your experiences with CBT and GET. Which is an exact copy of so many patients with ME. Where PEM is the biggest hurdle not the fatigue perse. It’s incredible we still need to be explaining this in 2017.
      I’m happy your tears were happy tears…..

      Thanks again for taking the time to comment. Means a lot.

      Anil

  • sissy

    I love this article. So many of us have lost abilities…..abilities we love, we need, in order to express ourselves. Wonderful, validating…to hear your perspective, Anil. As a dancer and as a pwme, I find your article to be so expressive and inclusive, in that all of us are crazy anxious, to be well, to do what we love, without fear of insane consequences. This article is so full of information as well….important facts about ME and the devastation it brings. Thank you for so beautifully speaking the words we all have inside us. I love your format, Anil, and especially the quotes. Real words from real people who Actually. Get. It. I’m so happy you are here with us….but I’m so so sorry for the reason. I’m a fan. Thank you…..your words are another way to speak to the world and bring desperately needed awareness.

    • Anil van der Zee

      Thank you Sissy for your kind words. Let’s hope for better days where we can dance without any repercussions. ❤️👍

  • Lisa

    So, so true. When I think about the hypothesis that is the basis for PACE and other related studies, I’m always struck by its absurdity. Beyond the fact that its central claim–that negative beliefs depress activity levels which correlate to symptom severity–hasn’t been replicated, how did this dodgy correlation ever seem plausible in the first place? Obviously it has the advantage (for its defenders) of circular reasoning given that patients who question it have already been labelled as suffering from ‘unhelpful’ beliefs (because it would be totally crazy to assume that patients might be able to accurately assess their own symptom severity or–crazier still–might have a biomedical condition that explains why they, say, can’t stand up). But that to one side, it is a truism of research that correlation is not causation. This doesn’t mean that one should ignore all arguments that are based on correlation alone, but it does mean that one should examine them very, very critically. At a minimum, one would expect this hypothesis to be able to explain how it is that millions of people the world over from widely varying backgrounds and demographic characteristics have fallen prey to an identical “psychological” malady. One would expect a very robust set of detailed case studies and large numbers of clinical observations that provided support for the hypothesis. One would imagine that a coherent set of risk factors for succumbing to this malady would have emerged (and yes, meta reviews have examined this question and failed to find one). Of course you already know this but it’s the thing that makes a case like yours so striking. How, exactly, does a world class dancer suddenly become so fearful of the pain associated with exercise that he can’t bring himself to go for two walks in one day? And you at least were diagnosed fairly soon but one further wonders how it is that the many, many people who’ve developed ME/CFS but aren’t diagnosed for years develop their false beliefs if they’ve never even heard of the illness and indeed firmly believe that they can exercise their way back to having full energy (such as in the case of Julie Rehmeyer)? And how on earth can those who developed this hypothesis justify not even addressing the question of causation for those who are most severely affected–one thinks of Ron Davis’s son. That’s deconditioning? Seriously? As we say here in the states–WTF?
    Thanks you for this post, I’m sure it wasn’t easy to get it written.

    • Anil van der Zee

      Thank you for your beautifully written comment.
      As you’ve noticed I’ve been wondering and pulling my hair out to get those questions answered myself. It’s too absurd…we can only try to move on and push got more biomedical research and hope the BPSers do not absorb all the funding. At the moment it’s hard to breath. We need some air

  • jA

    the CBT/GET stuff makes me so, so angry. i’ve been sick for 20 years and have a story like many–a promising, active life (distance runner/cyclist, science degree, etc)…cut short by a virus. i have such a hard time handling the derision, and the skepticism that this illness is very real and very physical. i’ve been through graded exercise too. needless to say, it did not do me any good. i got worse over time.

    what really struck me was your insight about body wisdom and dance–it was a kind of light bulb moment, a sudden realization about my own personal life. my best friend trained as a ballet dancer from an early age, and has done a variety of dance professionally. i wrote to her about this.

    what i said:
    what i found interesting was his talking about his perspective as a dancer (before he got sick), and it got me thinking. you’re tuned in and have
    been able to read and understand things about my illness/my body that
    others just don’t see. you just *get* it, on a different level.

    the idea of observing people’s physical and
    emotional cues, to be able to understand and emulate them…that’s
    so interesting to me. but it’s so rare for people to be able to do that. you always have been able to read me that way, like nobody else i know. i never considered your dancer’s perspective as being an important part of that.

    my friend’s response:

    One thing that I’ve said when I try to describe your condition is that I
    don’t understand how anyone can doubt you because you just don’t move
    like a healthy person. It’s in your posture and all your gestures. It’s
    just so deeply in your body that I am constantly confused that anyone
    could sit with you and not notice it. I know that my body movements are
    different when I’m depressed or dealing with a migraine — and different
    when I’m feeling great. So watching you move (and your
    stillness/posture) just feels super obvious to me. Maybe we need more
    dancer/doctors!
    ……

    thank you for your writing, anil. your perspective is so helpful to read.

    • Anil van der Zee

      Thank you for your very interesting comment. I love that your friend can read you this well and as I said I also don’t get it why so many clear signs are being missed and dismissed. I do think we need more dancer /clinicians. As you can see there are 2 quotes from 2 former ballet dancers, one physiotherapist and a sports physician. They both approach this in a very different way than most doctors I’ve met. So yes. All scientists and clinicians should first need to pass their ballet training before getting their degree… 👍. Seriously haha.

      Groetjes,

      Anil

  • Helen

    Thank you! I love that as a dancer you are so aware of what ME patients have been trying to tell the world for so long; ‘We are not tired, we are ill!’
    My body does not work as it used to; PEM is a lived reality not an anxiety driven outcome ~ I dislike being ill but it doesn’t make me anxious it makes me ready to be well!
    Thankfully my initial diagnosis was by a doctor who told me he didn’t know how to treat ME and it was up to me; I could push through, or I could listen to my body. I didn’t really have a choice, my body was shouting at me and I had to listen ~ pushing through made me ill not tired; 8 years on it still does. 8 years on I am as desperate for a cure as I was when I first fell ill, December 23rd 2008.
    Like you I find myself asking what drives those who choose to ignore what sufferers have been trying to tell them for so long; maybe if they learned to dance they would finally understand!

    • Anil van der Zee

      Thank you for your comment. I’m pleased to hear that you had a good doctor. So rare. Rare to say they don’t know. Very cool ☺️

  • KME

    After reading your blog, Anil, I feel like I’ve watched an achingly beautiful, tragic and hopeful dance performance. You took your experience, and mine, and others’ with ME, you took all that experience, put it on a stage and made it dance. And you’ve made me cry, good tears, the tears that come when someone hears you, sees you, mirrors you. Encore.

    • Anil van der Zee

      Such a nice compliment. Really too kind. But it’s true, it was something I wanted to write for a long time. Happy it had been well received ☺️👍

  • Fiona Wood

    Hi Anil. I have really enjoyed both of your posts. Thank you!
    I’m very interested to hear if you know of the cause of the build up of lactic acid? I’ve been in my current relapse since the end of March. I’ve experienced pain, fatigue and difficulty in walking before but never every day for now over 3 months. Not only is it happening if I go out in the car and wheelchair, but even pottering around in the house. I seem to have constant pain and fatigue in my legs. The consistency is new along with slurred speech. I am awaiting an MRI of the brain to rule out MS. I just don’t understand how lactic acid can build up so quickly and be there constantly!
    Any thoughts…..?
    Thanks in advance,
    Fiona.

    • Anil van der Zee

      Hi Fiona,

      Obviously I have no medical degree and very good you are getting professional help and advice. I too have the lactic acid buildup but even while just having a conversation.
      This study in Norway sheds a light on the issue.
      Hope it helps,

      http://kavlifondet.no/2016/12/new-study-on-pathological-mechanisms-in-me-from-bergen-research-group/#.WFv1B3FDk4Y.twitter

      Anil

      • Fiona Wood

        Thanks Anil.
        It’s all so strange!
        Thanks for the link. I’ll take a look now.
        Hope you make some progress! 🍀😊

        • Anil van der Zee

          You’re very welcome and I hope it helps. The studies are still very much preliminary but very promising.

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