TomKindlon

Tom Kindlon · @TomKindlon

20th Dec 2014 from TwitLonger

A Dutch ballet dancer raised a lot of awareness of #NeuroME by telling his story. Here's a post by him. #CFS -----
https://www.facebook.com/anil.vanderzee/posts/10152864810684770

Anil van der Zee

Hi friends,

Hereby I want to thank everybody for the enormous support I got for the campaign to raise awareness for Myalgic Encephalomyelitis .

So many shares of my story, likes, comments and private messages.

I'm not one to share much about my illness on Facebook. Mostly because it's rather private and so I had a long hard think about it if I was going to do so or not. This summer the ALS Ice bucket challenge was so successful. I saw ex colleagues doing it , students of mine, friends but nobody had any clue of what state I was/am myself. It inspired me to let go of my pride or shame and come forward .So it was time for a second coming out

I'm happy that people told me their loved ones seem to be more supportive towards M.E. after seeing my movie.

I'm happy that my friends now know more about my current situation . I won't have to defend myself as much anymore. Cause as someone wrote in the comments that it is exhausting as it is to have to defend yourself and explain all the time and hit a wall of skepticism on top of being ill.

It makes the illness even harder.

Furthermore I hope that this campaign will help with getting a better diagnose for this illness.

After the movie I talked to people who are miraculously healed after some brain training within a few days. If I then ask who diagnosed this person it seemed to be the psychiatrist.

No M.E. specialist ever did any physical tests on that person.

Or someone who got healed by exercise therapy . But when you ask a bit more this person also had a gluten allergy . She stopped with the gluten and then she slowly healed from "M.E." .

You get super sick if you have an allergy for gluten. It's as well an auto immune disease but has nothing to do with M.E. Yet another misdiagnose .

Besides always feeling like you have a big flu, combined with a big hangover and muscle pain after a marathon day in day out. The 3 main symptoms of ME are P.E.M. ( post exertional malaise, symptoms worsen after the smallest of activities both physically and mentally and last longer then 24 hours) , unrefreshing sleep, and brain fog/ concentration problem ( imagine it how you feel when you have a fever )

You need to have at least these 3 symptoms. Yet there are criteria like the FUKUDA criteria that have 8 symptoms where you need to have 4 of those symptoms. So it can happen that you have 4 other symptoms and not the 3 main symptoms and still get the diagnose M.E.

In Holland and many other countries it's almost an obligation that you do Cognitive Behavioral Therapy (CGT). The idea is to learn to deal with your symptoms better. In practice they push you to go over your limits. And if you are unlucky in combination with Graded Exercise Therapy( GET) which is a build up of activity through exercise. I did the same when I got ill. I relapsed for months.

These therapies are listed as the only "working" methods for M.E. with the results the show for.

But if we go back to the FUKUDA criteria many people who join a therapy like that will not have the main 3 symptoms . These people will of course improve by exercise and and or going over their limits . They don't have P.E.M. the biggest problem in M.E.
So yes those studies show a great success rate but not based on only real M.E. patients .
The real M.E. patients have often little to no benefits or will even worsen. Varying from a little relapse to becoming bed bound for months or even years. Some people lay in the dark for 8 years or more with M.E.

These therapies are a bit like telling a person with a hernia to go and lift some heavy boxes every day. Ugh.

Patient who are not able to finish those treatments are often labeled as unmotivated , lazy . And probably will get a reduction in their social welfare or get none at all. With the results that follow when you have no income and being chronically ill.

Or when the patient is an infant the parents get the blame for holding back their child to recover so Jeugdzorg ( Youth care ?? ) will be informed to consider removing the child from the family . Yes we are still talking about the very progressive Netherlands.
I'm an openly gay man . A few decades ago gay people were also treated with a sort of CGT to get healed from their homosexuality. For me it's mind blowing that in this day and age we still get CGT for an inflammation in the brain probably cause by a bacterial or viral infection at some point as the only recognized treatment in the Netherlands?

Talking with a psychologist or some sort of CGT that doesn't push you beyond your limits can be useful though. As being chronically ill is enough to deal with on it's own.
Many doctors will tell you it's hard to diagnose M.E. Yet I don't fully agree.

Yes there are no blood tests or biomarkers for M.E. Though an M.E. specialist will for example do a 2 days biking exercise test to measure the oxygen and the blood flow and the moment your lactic acid starts to kick in until you can do no more. M.E. patient will not do very well obviously. And if correct the next day the test will probably will be worse.
There is the table tilt test . Where the blood flow and blood pressure is measured from an upright position to flat.

Cortisol levels are mostly low in the morning . And blood testing will show and overactive immune system. And you need an array of other blood tests and a good psychiatric evaluation to make sure you don't have any other things bothering you that might be the cause of your chronic fatigue.

You need to know where to look and many doctors don't know. They are still ill informed . Resulting in people being misdiagnosed . Either people who have M.E. get another diagnose and are being told to maybe try some antidepressants cause it's probably psychosomatic or CGT/GET.

Or people who really don't have M.E. get the diagnose M.E.

This needs to change . Urgently.

Of course I need to thank my friend Jan Kooijman for sharing my story so it pretty much went viral and got so much attention.

It shows how powerful a gesture like that can be .

Minister Edith Schippers once wrote a letter stating that recognition for M.E. is not the responsibility of the government but of the medical world.

She might be right to some degree . But to me ( and I quote mr. Snoop Doggy Dog) she dropped it (M.E.) like it's hot .

It would be a small effort from her side to make M.E. a priority to do more research . Get more fundings or better education for the phycisians.

She keeps calling the symptoms inexplicable . And yes they will stay inexplicable when all the fundings go to CGT/GET.

There is a clinical trial in Norway with Rituximab . An immune modulating drug that is used with chemo therapy and also ( correct me if I'm wrong) Reumatoid Arthritis .Some people completely healed from M.E. or improved dramatically. Something that has never shown before .

The brain inflammations have been found again this last year in Japan, Groningen( in a private clinic) and recently again in Stanford University. Yet the main big hospitals in Holland are pretty much flat on their behinds when it comes to duplicating that kind of research .

You could argue that we don't need to do any research as other countries are doing them for us . But then we could as well stop doing research for other big illnesses here as well??

To make a long story short. We need more recognition, more research, and a better diagnose.

I hope that me being an ex-professional ballet dancer shows that not only people who have a so called "no clue what to do with their body". Who are chronically lazy and unmotivated are suffering from this illness.

I probably know more on how to handle my body and push through pain and fatigue then most of those therapist at the CGT/GET sessions.

Once again I'm amazed by all the reactions. I didn't get the chance to respond to all of you in person because the last weeks of preparation and the actual campaign was taxing on me. But know I've read them all and touched me deeply. I'm humbled by the experience.

And this post is of course to like and share if you care .

Regards,

Anil van der Zee

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