ME and the Medical Mishap

Did you know that people used to think the illness MS was all in the patient’s head? Or Aids was a manifestation of suppressed homosexual desires? Luckily, we know better now, because the medical industry discovered how these diseases work.

However, as a species, we haven’t learned much from it. The same thing still happens with ME and undoubtedly with more illnesses. As no clear explanation has been found yet, a lot of people think that people who suffer from ME aren’t sick at all, they just believe that they are. This attitude towards the condition led to the therapy CBT in combination with GET. For 25 years this therapy has been consistently making people’s health worse. The thought being, by learning to think that the disease is merely in your head, to actively change your thought patterns and behaviour, this will automatically make you better.

Eighteen years ago, I underwent this therapy. As we are now at a turning point in history, and the world is beginning to see this counterproductive therapy for what it really is, I feel comfortable enough to speak my mind. This blog marks the first time I am sharing my story about the therapy and the scars I still carry as a result.

Cognitive Behavioral Therapy and Graded Exercise Therapy (CBT and GET) won’t sound familiar to everyone. You might have heard of CBT, which is often being used in the psychiatric field. CBT is also used with somatic conditions, but not as a cure.
It’s a therapy where you put your thought patterns under a microscope and take out the irrational ones that cause ‘wrong’ behaviour. If you learn to change these thoughts to healthier ones, you’d change your behaviour and you become a better version of yourself.

GET on the other hand is a practical therapy, where you gradually build up your exercise routine, so you’d gradually be in better shape, and you’d get more confidence in your body.

Even though there is enough evidence to prove ME/CFS is a multi-system illness, and doesn’t have a psychological origin, doctors still believe the combination of these two treatments to be beneficial and continue to recommend it to people who suffer from ME/CFS.

Apparently, all the evidence to the contrary still hasn’t reached the medical professionals.

Luckily, today we find ourselves on a crossroad. There have been court cases, signature campaigns and articles that forced this medical mishap into the spotlight. Earlier this year, the United Kingdom decided to remove this therapy from the guidelines (and hopefully make this decision final at the end of 2021), and the Netherlands will soon reach a decision for our country also. Finally, there have been investigations and the results have shown how severe the consequences of this therapy could be for a person. Last November, NICE (the National Institute for Health and Care Excellence) carried out an analysis that resulted in an extremely low grade: without exception the quality behind the science of CBT&GET is ‘low’ to ‘very low’. Which is the equivalent of getting an E or a F in your exams.

58,3% reported a worsening of the symptoms of ME after CBT. After the practical therapy symptoms got worse for 81,1% of the cases. (Apparently the two therapies aren’t always offered exactly the same as a dual treatment.) The group of people who are considered severely sick and are bedridden, has grown from 12,6% to 26,6%. Lives of people coping with ME have been ruined by them being pushed over their boundaries; some have experienced this for years, worse still, others for a lifetime.

A comparison: Astrazenica was stopped in the Netherlands because 1 in 100.000 people got a grave disease. With CBT&GET there’s a chance of 1 in 10 to get seriously sick instead of ‘just’ sick. The first has been cancelled immediately and the second isn’t, that’s like swatting away a wasp while a T-rex is coming straight at you.

New patients are still being prescribed this therapy, with a fat chance to get even worse. Still so many clinics claim to be able to help 80% up to 98% of the people with ME/CFS. By changing definitions of words like ‘tired’ halfway through, or not counting people whose condition got worse, false numbers are being presented.

I was a girl of 15 when I started this therapy. I had been sick for a year and a half already and I just didn’t get any better. Doctors dismissed me or sent me to a psychiatrist. Finally, I got some recognition in Nijmegen (The Netherlands). I was listened to and I got the ME/CFS diagnosis. The proof I wasn’t crazy was written in curly letters on a small note. With that recognition, relief and a promise of a solution, I started CBT&GET therapy.

I will try to draw a picture of the therapy.

The therapy was heavy, very heavy. Imagine having a bad case of the flu. Think back of a flu that had you in shambles, walking to the toilet was already a big undertaking. Try to remember how you felt and think about having to walk according to a walking schedule. Even with that heavy fever, going to get dressed, chop chop, put on your shoes and walk for ten minutes. Do you feel the sunlight hurting your eyes? Do you feel your legs being so heavy you can barely lift them? How does it feel to see the end of the street, so far away, and to realize that this isn’t over? You have to walk the same block another three times. You’re not allowed to feel this way, you tell yourself, it’s only in your head, according to the therapist. You’re not sick, you just think that you are. Come on, pull yourself together!

When you finally get back home, you’re not allowed to go and lie down, because you aren’t tired! That’s not true! You’re just afraid to move. You have all these ‘unhealthy thoughts’ and those aren’t right. Plus, in about 4 hours you have to do it all over again. And tomorrow, after you have struggled to finish your toast, it starts all over again. This will be your life for the next six months.

I wasn’t all too good at this, with a body that, in hindsight, was ill. Somewhere during the therapy, they pushed me too far. I wasn’t able to look straight and felt worse than ever before. Even though my parents had to force me to get out of bed, because this ‘being ill’ wasn’t anything more than a relapse to my old behaviour. My mom and dad wanted the best for me, this was just the core of the treatment. In hindsight I understood that this had been really hard on them, to have to force their daughter not to rest.
This whole situation led me to not trusting anyone. The whole world was upside down.

I felt very unsafe and alone.

The worst of it all is the relationship this makes you have with yourself. You learn to distrust your own body and mind, not to give in to feelings. And every time you’re too ill to stand up, you feel like a failure. No matter how hard you’re working, you’re unable to do what other people can do, you never feel like a normal person.

You experience disappointment every time you can’t keep up at school, or when you have to quit again when you try to play a sport. And why, you keep wondering do you always get infected. Because you are not ill, that’s what the doctors keep telling you, but you also can’t lead a full life. You just don’t understand how life can be so hard. Often you wish for a broken bone just to have an excuse to take a break, the pressure is simply too hard to handle. You grow to hate your body that doesn’t function well without a proper reason.

For six months I did this therapy, but eighteen years later I’m still doing damage control. I was lucky that my symptoms only temporarily worsened, physically speaking. I think my youth and my –comparatively- light version of ME have saved me. If I would do this therapy again now that I’m 33 and suffer from a worse case of ME, I undoubtedly would have ended up bedridden too. The resilience I had when I was younger, has left me.

For years I let myself and the world around me believe the therapy actually helped me. The doubts I had because of how bad the therapy felt, grew when I made progress on my own. When I began to accept the fact that there were actual physical ailments, and how much it did help to take some rest, I came to the conclusion the therapy had been wrong. I began to accept the CBT&GET was counterproductive and only brought about bad things.

I wanted to leave that period behind and try to accept myself for who I was. But the CBT&GET had nestled itself in my brain and wouldn’t just go away that easily. By training myself for all those years to see my thoughts and physical sensations as lies, I learned to ignore the signs. My mind automatically categorized those signals as ‘unimportant’ and made me ignorant of them. Cold, warmth, peeing, hunger, but most of all pain, I didn’t register it.

I lost all the contact to my body.

A couple of weeks before my 26^th birthday this became really evident, my ankle was run-over by a car. The treatment for my ankle consisted of exercises and rest intermittently. I wasn’t able to do that because I just didn’t feel the pain, I always went too far. Pretty quickly I was sent to a rehabilitation centre where I started to reconnect with my body. A few years later, while visiting a meditation-retreat, with the help of some monks I was able to feel my breathing again.

Despite this, my condition worsened. In November 2017 I called my employer to say I wasn’t coming in to work as I was sick. I was physically unable to stand, I couldn’t talk anymore. That was my low point.

Three and a half years since calling in sick that day, I’m housebound. My ME is a lot worse than it used to be, and I developed POTS.
I worked hard towards stability and to rest when I need to. My connection to my body has healed completely and I’ve become an expert in recognizing the signals early on. But the battle with the inner voice that started with CBT&GET is always ongoing. ‘You shouldn’t rest during the day’ the voice continues to say, even though I am bound to lie down between 20 and 23 hours a day for the condition not to exacerbate. It’s a never-ending battle, that I’m slowly winning.

If you read this, and think that many others have fallen sicker because of this therapy, you are probably thinking ‘How is this still a thing after 25 years?’.
The therapy CBT&GET is ‘evidence based’ and that term seems to be sacred in the medical industry. The fact that the ‘evidence’ has been tampered with apparently isn’t an argument. The biggest research project which researched CBT&GET on ME/CFS, The PACE-Trail, has been proven to be fraudulent. After five years of fighting the results of the research were finally forced out in the open, the numbers then plummeted from 59% and 61% to 20% and 21% when the right norms were used.

But still the therapy continues to exist.

The people connected to this treatment are now focused on Long Covid. I hope that when it’s known that the Long Covid-patient (which has a lot in common with the ME-patient) could also worsen after this treatment, we will conclude so immediately. Let’s learn from past mistakes, and let’s hope history doesn’t repeat itself. Let’s look back at the time of CBT&GET and say ‘What were we thinking? Teaching people to ignore their bodies, that can never be a solution.’

Translated by Lonneke Jansen