Our daughter being ill for 16 years allready.

On september 18 a petition was handed over to the Dutch Health Council. Two requests were made:
1. stick to your assignment (= advice on scientific developments about ME) &
2. change the committee (there are a lot of MUPS scientists in the committee)

Several letters from patients (also from Mark Vink) and patients associations accompanied the petition.
I have translated Célines story in English to be able to share it outside The Netherlands.

Our daughter, now aged 26, has been ill since she was 10 years old. That feels very bad.
If she is blamed for not working on her recovery, it’s hartbreaking.
The rehabilitation physician, after almost three months of clinical rehabilitation, declared this was a case of puberty that got out of control.
Not only was she persuaded to perform more physical effort than she was able to, they also made her feel guilty for the fact that she did not recover.
One cannot seek help for this illness without being approached with great suspicion. That counts for the patient as well as for the parents.
Instead of being parents we were turned into sickness sustaining factors.
One member of the family suggested that father was suffering from Münchhausen by proxy. The family has been split apart forever
From the very first moment the sickness has been labeled with the diagnosis ME, the opinion of the patiënt nor the patients parents matters anymore. Whatever background one has, the patient and the parents have false illness beliefs and therefore they don’t have any say.
After 16 years passing by, we see our daughter’s health situation deteriorating more and more. With much effort, mostly studying at home and 1 hour a day at school, she managed graduating from highschool.
She had to give up her big dream building a career as a professional singer. She had to end her studies at the conservatorium because she got worse as a result of the exertion of singing, studying and cycling the short distance to the conservatorium.
Increasing her activity level did not make her better, it worsened her health status.
Recently our daughter consulted a physician for advice on medication. The doctor asked father to leave the room and our daughter was questioned about the homesituation; was she getting along well with her parents?
It’s so frustrating, knowing that severely flawed scientific research still is being used to underpin the treatment. A treatment that did not lead to amelioration or recovery but, to the contrary, led to deterioration.
Often our daughter asks herself if she is really ill? She is lying in a dark room, can’t cope with sudden sounds and lights, she can’t climb the stairs anymore, she needs help washing and getting dressed, she has severe metabolic problems.
The gaslighting certainly did its job.



I'm so sorry to hear what you and your daughter have gone through with the medical establishment. It's inexcusable. The illness alone is devastating enough without abuse from the medical profession. Gaslighting is a very good term indeed!
I´m very sorry to hear that, as a father it ressonates deeply inside me.
Don´t let her question if she is ill, there are lots of people from all over the world strugling with this disease.

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