When healthcare and politicians respond to demands for better care and support for people with Myalgic Encephalomyelitis (ME), they often refer to that a lack of knowledge about the disease and that more research is needed. And then nothing more happens. Our demands for adequate care that does not harm us fall flat.

Of course there are things we don’t know about this hellish disease. But that does not prevent the knowledge about ME, PEM and the consequences of unavailable and incorrect care that already exists being used to deal with the situation here and now.

It is possible to act directly, but this is only done in exceptional cases.

Too many people in healthcare, politics and authorities use their ignorance as an alibi. A convenient way to distance yourself from responsibility. An approved reason not to change one’s approach and treat us sick with respect.

But to ignore the knowledge that exists is to choose ignorance. To ignore our needs and not to adjust one’s behavior or guidelines according to existing knowledge, is to choose to expose us to unnecessary risks. To allow us to be hurt.

That’s when it turns to violence. Neglect and abuse in the name of goodness.

You need to listen to our experiences with ME, take part in our knowledge of how our sick bodies work and use that in your work. This will lead to fewer health care injuries, a lower burden of disease and a better physical and mental well-being for those of us who are ill.

In the long run, it will also result in fewer deaths. For the chosen ignorance of ME kills. And when you stop using it as an alibi, good things will happen.

Fewer people will be driven to such a severe degree of ME that the body can no longer withstand life, let alone care. And when the suffering due to ignorant treatment decreases, fewer ME sufferers will also see death as the only way out.

To those of you who choose ignorance, I want to say:

Fuck you for ignoring me.

Fuck you for ignoring ME.

Drop your alibi and read more about ME here: https://mitteremitage.wordpress.com/varfor-fuck-me/

Buy statements in my activist shop and organize your own home protest: https://eremitens-shop.myspreadshop.se

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