Skip to content

#undauerME #art2cureME #millionsmissing (ENG)


IF YOU ALREADY KNOW EVERYTHING ABOUT M.E. & YOU JUST WANT TO KNOW HOW TO HELP please click here. IF YOU WANT TO KNOW “WHY” PLEASE KEEP READING !!! 😎

 

 

INTRODUCTION

Hi, my name is Anil van der Zee. I’m 38 years old & a former professional (ballet) dancer from Amsterdam. In 2007 I contracted a viral infection, Cytomegalovirus (the nasty brother or sister of Mononucleosis) and since then, have never fully recovered. A few years later I received the diagnosis Myalgic Encephalomyelitis ( M.E.) better known as Chronic Fatigue Syndrome (CFS). Although the name CFS suggests this illness is all about being chronically fatigued it really isn’t. Let me explain. 

 

WHAT ABOUT M.E. ???

You can have a host of symptoms like; unrefreshing sleep, cognitive impairment, extreme exhaustion,  joint/muscle  pain, inflamed lymph nodes, persistent sore throat, severe headache, neurological abnormalities, sensitivity to light, sound, odors, chemicals, foods, and medication. 
Chronic fatigue or rather extreme chronic exhaustion is just one of the symptoms. Not THE symptom. 

https://laurachamberlain.co.uk/

 

The cardinal symptom of the illness is Post Exertional Malaise (PEM). It’s a worsening of symptoms that kicks in 24-72 hours after a minor exertion. I describe it as a combination of a heavy flu like feverish feeling without the actual temperature. Your muscles (and apparently also the brain) get lactic acid like you’ve just been biking up a hill from just saying a few words. A feeling of a huge hangover and as if you didn’t sleep for a few nights. Many people experience a lot of pain 24/7. What a lovely feeling! But it’s not just fatigue, you really do feel even more ill than normally for days, weeks or months.

 

A LITTLE BIT OF HISTORY.

In 1969 the World Health Organisation recognised ME as a neurological illness. But in 1988 the Center of Disease Control renamed the illness as CFS. They created new criteria where PEM was not a mandatory symptom for this illness. Resulting in other illnesses where fatigue is an issue, like for example depression, burnout or idiopathic chronic fatigue also becoming a part of the CFS diagnosis as well. That’s where psychiatry took over this illness, like it previously did with Parkinson’s (very nervous people), Tuberculosis (lazy people), MS (hysterical women), Stomach Ulcer (stress), Autism (refrigerator mother)…..

 

“I think the name that this disease has been called most often, chronic fatigue syndrome, was really coined by a group, organized by CDC, back in the late 1980s and the focus of the group was on creating a case definition. I was part of that group. None of us was even thinking about the name and when the name chronic fatigue syndrome was suggested, everyone said sure, why not. I think that was a big mistake because the name, in my opinion and the opinion of a lot of people, is it both trivializes and stigmatizes the illness. ”  

Dr. Anthony Komaroff – Harvard Medical School 

 

Times Square, New York, public awareness add

 

DO YOU BELIEVE IN MAGIC ???

In most countries the common treatments for ME are cognitive behavioural therapy (CBT) & graded exercise therapy (GET), neither of which have any evidence that they work. Many feel that this could actually do more harm than good. PEM is again not a mandatory symptom to get the diagnosis ME /CFS. Just 6 months of fatigue. The current CBT /GET model for ME  is nothing more than an unproven hypothesis that claims that by thinking differently and slowly building up your activity levels you can get better. Some claim that after the clearing up of an initial viral infection there’s either no underlying disease mechanism anymore or it is in fact still a biological illness.

Either way you’re imagining your illness or it’s perpetuated by (false illness beliefs), that you are afraid to move (kinesiophobia) and PEM is just a logical way of your body reacting because you’re out of shape (decondtioning).You just need to push through & believe…..It’s like magic!?! Now don’t get me wrong, supportive counseling can be helpful like in other biological diseases to learn how to cope with an illness, but this is directive CBT. It is specifically directed at changing the way patients correctly think about their illness with the intention of convincing them they do not suffer from a physical disorder. Professor Sir Simon Wessely, currently President of the Royal College of Psychiatrists and “godfather” of the CBT/GET model for ME has publicly stated: “CBT (for ME) is directive – it is not enough to be kind or supportive”. That pretty much sums up the way patients are being treated world wide……

Patients without ME / PEM do improve by gradually building up their activity levels, so there are always patients that do recover in CBT /GET clinical trials. But those are not the ME patients with PEM. These trials are really meant for people with chronic fatigue. It’s completely misleading to call these trials ME /CFS trials. 

All the results are subjective. None of the objective measures (walking test, actometer) show any improvement. To make matters worse it turns out that lots of the data has been manipulated to get better results, yet most countries still rely on the outcomes of these kinds of studies. Sadly the ME patients are left much worse off. (UK)(NL) Some who were moderately ill ended up being bed bound or wheelchair bound for years to never return to their previous levels before these types of treatments. Myself included. And because of the fatigue label, in many countries proper financial & medical support is a privilege rather than a normality.
(in-depth article by David Tuller

 

“the claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.”

(Wilshire et al.) Carolyn Wilshire, Ph.D. Senior Lecturer School of Psychology, Victoria University of Wellington

 

THE SHIFT.

Fortunately biomedical research has been catching up these last couple of years. ME is overall starting to get mainstream recognition. A real paradigm shift is happening, where it’s almost intellectually embarrassing for clinicians and scientists to still claim that ME is in any way a behavioural or psychological problem. Especially 2016 6 different studies showed abnormalities in the cell energy metabolism. Dr. Robert Naviaux (University of California) compared it to the ‘Dauer state‘ seen in the Nematode Worms that permits survival without any food in for example extreme cold conditions by slowing down the metabolism into a hypometabolic state. Christopher Armstrong (Melbourne University) compared it to what is seen in starvation. Dr. Ron Davis (Stanford University) who’s son Whitney Dafoe is severely ill compared the state of the very severe ME patients to a near death state that you can stay in for years…The conversion of the most important energy source glucose (sugar) into energy is just not happening in ME. Instead it switches to a less efficient source of energy in the form of fat and amino acids. It’s like starting a car without any fuel. ( Dr. Davis’s review of the Naviaux RK, et al.’s publication)

In Norway 2 oncologists, Øystein Fluge & Olav Mella (Haukland University Hospital Bergen) are conducting a clinical trial with Rituximab, a cancer drug, also used for Rheumatoid Arthritis, M.S. & Lupus. It’s in it’s third and final stage, having previously already showing promising results. Suggesting that ME is an autoimmune disease, like the other 3 diseases mentioned above, but in this case the energy production is inhibited. The body is neither able to produce the correct energy nor is there the correct sort of energy to recover after an exertion. Makes sense right??

NIH funding 2010-2014 for ME vs prevalence ME

But research is going slowy because of lack of federal funding across the globe. In the US, ME gets less funding than male pattern baldness and hay fever. In the Netherlands there has been no federal funding into biomedical research since 2005, so it’s no surprise this illness is still not solved…crowdfunding is the only option. 

 

Here a small clip about the Norwegian study. Push CC to turn on the English subtitles:

 

FATIGUE ???

25% of the ME patients are housebound. I live in a sound isolation cabin in the dark because processing light & noise is too much for me. But I’m still able to leave my bed 15 minutes per day. Haven’t been outside for about 2 years now. Some patients are so ill they can’t turn over in bed, can’t communicate, are tube fed. Staying in that state for years. Some improve but  sadly some also die. For some people going to the mall or visiting a friend, that exertion can give them a PEM crash. For me having someone just entering the room and leave without saying a word can make me worse for days or weeks. It’s that extreme. This illness is really about becoming more ill after exertion, and sometimes the worsening is permanently, but it’s not about just being chronically fatigued. Many times people have suggested to me that if I just maybe go outside for a bit, that I might feel better. Just open the window, take a holiday or do other fun stuff and push through the “fatigue”, sadly that’s not going to work. Fatigue is not the real issue here. 

 

Gene expression pain & fatigue after exercise. Healthy controls vs. M.E . patients, some are 10 times as high (Light et al, 2009)
 

 

WHY ???

#MILLIONSMISSING protest The Hague 2016

Millions of people are missing from participating in daily life. 25% of them, children and adults, hidden away in darkened rooms. Millions of research funding are missing to cure this horrible disease. Driving people into total desperation all because ME is considered nothing more than “chronic fatigue”. You can’t talk your way out of ME as you can’t talk way out of any other biological diseases such as Parkinson, Rheumatoid Arthritis or Multiples Sclerosis. ME should not be treated any differently. M.E. is not the same as chronic fatigue, and chronic fatigue is not automatically M.E. Fatigue or extreme exhaustion is a major player in this disease, as it is in other illnesses. Fatigue is not ME specific. PEM is the hallmark of this disease, that needs to be urgently made clear. I don’t want to hear any more stories about people, and especially young children being ignored, blamed, mistreated, neglected or even abused because of the misconception that we/they are just (a bit) fatigued. We need research which must be focused on a cure. Stop investing millions of funding into more useless CBT/GET trials, that could’ve been spent on biomedical research. Maybe you can help us achieve that.

                                                                                                                                                                                                                                                                                           


HOW ?!?

For me creating art is a movement, a necessity to feel alive. My therapy and now of course a good way to raise awareness. So as I can’t create that “movement” in any way, I asked some my fantastic friends, who are (former) professional dancers and fellow artists to do it for me. And for all the patients that can’t live their lives because of ME and PEM. How can you help!?! 

  • Go out there & dance, choreograph, sing, act, draw, play, photograph. Whatever you feel comfortable with. In your living room, studio, theatre or even better in the street. Maybe you have some older work you want to dedicate to the cause, create a small piece or dedicate a whole evening. But whatever you do. Film it, put it online (Facebook, Twitter, Instagram) .
  • Ask /invite a few friends to do the same. 
  • Like the Facebook page: https://www.facebook.com/undauerMEArt2cureME/?ref=aymt_homepage_panel
  • Don’t forget to urge people to donate to one or all of these amazing group of researchers to help find a cure : CLICK HERE TO DONATE
  • Please sign this petition : https://meisgeensolk.petities.nl/?locale=en
  • Copy & paste the following text and hashtags to your work online: 

I’m raising awareness for Myalgic Encephalomyelitis (M.E.) better known as Chronic Fatigue Syndrome (CFS) through (performance) art. M.E. is a debilitating neuroimmune disease affecting 17 million children & adults worldwide. The name CFS wrongly suggests that this illness is all about chronic fatigue or rather chronic exhaustion. But exhaustion is just one of the several disabling symptoms. The hallmark of this disease is Post Exertional Malaise (PEM). A severe worsening of symptoms that hits 24-72 hours after a minor exertion that can last for days, weeks or be a trigger for a relapse. You don’t just feel fatigued, you feel extremely ill. For too long this disease has been hijacked by psychiatry because of the fatigue label. but these theories/ hypothesis are slowly starting to crumble. This is also due to the fact that biomedical research is catching up. Unfortunately research is going slowy as it mostly relies on crowdfunding with a lack of federal funding globally. So we urgently need your help. Want to know how? Click on this link for more information:http://anilvanderzee.com/undauer-eng/

#undauerME #art2cureME #millionsmissing #pwme #mecfs



Thank you for your time. Please spread the word, share this blog all over the place, don’t forget to create & don’t forget to donate

#undauerME #art2cureME #millionsmissing

Kind regards,

Anil van der Zee 😁😎😊

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

Anil van der Zee
Former dancer, teacher, aspiring choreographer & photographer. Currently life on hold ; Myalgic Encephalomyelitis. Blogging out of necessity.
  • This page is packed with good information so it will take me some time to read it all. But at first glance it looks great!

    Thank you for creating this page.

    • It became a bit longer than I wanted. But I wanted it to be clear for people outside of the ME community. Hopefully it worked. Thank you very much for the compliment.

  • Elle See

    Thank you!

  • Jo Best

    This is excellent, thank you!

  • Helen Franco

    Thank you so much for gathering all this information. A truly herculean effort! I’m where you are. It’s been 14 years. A mind full of art, unrealized. What a great suggestion about getting our art colleagues to create on our behalf. Thank you for your beauty, your light and open heart. On less brain foggy days, I meditate and send white healing light to myself and others. You are part of my light family now. Bless you, your beautiful creative mind and heart.

    • Super sweet message. Yes please ask your artists friends to help us out. ❤️

  • lindavanson30

    Hoi Anil,
    Ik heb je voor het eerst gezien in een filmpje van de ME/CVS stichting!!
    Jou interview…. Brok in mijn keel, tranen rolde over mijn wangen ik was verbaasd….
    iemand die precies verteld hoe ik me al jaren voel!!!
    Ben ook ME/CVS patient en lig bijna 24/7 uitgeput op bed of op de bank.
    Vraag me dan ook vaak af hoe beperkt zijn andere mede ME/CVS patienten
    Liefs Linda v Son

    • Vervelend om dat te horen. Jammer genoeg inderdaad herkenning. Hopelijk helpt het wat om het een plekje te kunnen geven dat je niet alleen bent.

  • JaimeS

    Brilliant work! I can’t imagine the level of energy it took to compile all of this. Well-done and take care.

    • Hi Jaime. To be honest it was ok. Took my time. The biggest challenge was setting up the website itself. Thank you for the compliment. I tried to keep it as easy to understand as possible.

  • asje

    Geweldige actie en prachtige site! Kan groot worden, lijkt me. Alle complimenten!

  • This is an excellent summary. Thanks!

  • Scott S.

    Great job Anil, on both the content and the activism. I look forward to the day when you’re well enough to perform, and I’m well enough to watch.

    • Hi Scott that’s super nice of you say that. I hope I won’t be too old by then.

      • Akasha

        You will never be too old to perform Anil, always remember that!
        Thanks for the great job 😉




        0



        0



        0



        0
  • christine

    Ik hoop dat dit helpt om deze ziekte nu eindelijk op de kaart te krijgen. Het is heel ironisch maar ik denk dat jij als ‘voormalig sucesvolle ma’n meer gewicht in de schaal legt dan al die “zielige vrouwtjes die gewoon geen zin hebben om hun veranrwooirdelijkheid te nemen en dit somatiseren en die je daar met flink sporten en anders leren denken wel weer vanaf krijgt “. Wens je alle goeds , Christine

    • Dank je wel, ik hoop het ook. Triest dat er mensen niet geloofd worden. Ziekte is zo al heftig genoeg.

  • Elizabeth Milo

    Going to reblog this. Known your name for years (from Twitter, I guess), never knew about you blog. X

  • Elizabeth Milo

    I’d like to repost this on my WordPress blog, but I’m not sure how to do it. I’ve known your name for years (from Twitter, I guess), never knew about your blog. X

    • Hi Elizabeth. This is my first blog ever. Never had one before. Honestly writing is very heavy. Not sure if I will be blogging much. Took my time (months) to write this one. Hope it helps to spread awareness 😇

    • Anil van der Zee

      Elizabeth. This is my first blog ever. Never had one before. Honestly writing is very heavy. Not sure if I will be blogging much. Took my time (months) to write this one. Hope it helps to raise awareness 😇




      0



      0
  • Pingback: Dancers & CBT/GET-realness | Anil van der Zee()

  • Sinead Marie Coveney

    Thank you for what is such a great explanation I’m sharing it with friends and family who really don’t understand fully. My daughter Katy is now 13 and has been ill for 9 months during which time she can now no longer walk and has been absent from school. Previous to this she was a dancer and cheer leader and was just about to get her first pointe shoes it’s a heartbreaking destructive illness that no one who suffers would ever exaggerate and it’s about time proper research was funded and supported. 💜💙

    • Anil van der Zee

      Sinead,

      Thank you for your kind words and I hope it helps to raise more awareness for this disease. I’m really sorry to hear that your daughter is ill….some children do recover or improve again so let’s hope she will as well. Sending strength,

      Anil

%d bloggers like this: