You can’t ignore M.E now.
Ignore. Yes, that is what has happened to ME over the past decades. Ignoring the biological nature of the disease, psychologizing it, ridiculing it, bending a truth into something that was never the truth.
And so here we stand and lie, without answers, without effective treatments, neglected, harmed, traumatized, and deathly ill, while millions of people with Long Covid are being pushed into the same abyss. This is not a mistake. This was a deliberate choice. This is a scandal. A post-acute infectious syndrome (PAIS) scandal, and it deserves all the attention.
Looking away and ignoring further is being complicit. If this is accepted, what does that say about who we are as a society, as human beings?
Rob Jetten, Anil wants to dance ballet again!
For me, after eighteen years of being ill, it is too late to ever work professionally as a ballet dancer again. My career has unfortunately already gone down the drain. Ballet, thanks in part to chronic and collective political inaction, is something I can forget. But that does not have to be the fate of new generations.
Last week you, Rob Jetten, happened to attend a dance performance where Nederlands Dans Theater performed together with my old school, the Royal Conservatoire. You will have seen the passion, also that of the younger generations. You know what it is like to be a (top) athlete and what loss it brings when you can no longer perform well because of health.
In 2020 you lobbied for a Covid expertise center, with lessons learned from the handling of Q fever. Unfortunately, we know that the handling of Q fever fatigue syndrome is still severely inadequate, meaning this PAIS group still does not receive the appropriate care, support, and desperately needed biomedical research proportional to the enormous disease burden and profound disability that PAIS causes.
Despite your previous efforts, it seems that with Long Covid and other PAIS things are still not going in the right direction. D66, as the largest party in the Netherlands, included nothing in its election program about Long Covid or PAIS, despite the enormous impact of the pandemic and the growing number of people who have disappeared from life.
“It can be done” was your slogan during the election campaign. This is the moment to make that true for us, people with a PAIS. Finally include it in the government program and give us a prospect of a better future.
Adults, young people, children, deathly ill, already tied to beds that have become their world.
A new generation, including many athletes, with severe disability has reported at the doors of the government. They are crying out in despair for help. We are not going to let them fall.
Right, Rob?
Do people with PAIS die from PAIS or from collective neglect and indifference?
Every week we receive reports from people in the community who have died. From the disease itself, from complications, but more often from suicide or euthanasia. Research shows this does not come from clinical depression, but from pure despair.
Deaths marked by systemic neglect and indifference from those who should be there for us. Every time someone dies, patients know it did not have to go that way. A cold silence at a cry for mercy. An end to suffering that seemed unnecessary.
When will someone finally intervene, or do we accept that this is Dutch healthcare, a system that apparently let its humanity die long ago?
I’m sick of this shit!
Eighteen years of illness and still counting. No end in sight. No perspective. Not for hundreds of thousands with PAIZ, not for me and not for my loved ones. Because their lives are just as much on hold. People now living in a sick system that not only makes them sicker, but also keeps them sick.
This cannot go on. Something must happen. Now. No more empty promises. Action. Real, visible, tangible action!
Finally show that you dare to choose for these human lives. That you want to be part of the solution instead of the problem. The current suffering is truly unnecessary. It can already (partly) stop now. Stop looking away. Take action. It has really been enough!!
I’m sick of it! I’m sick of this shit!!
Your Silence is Killing M.E.!
For all patients, advocates, my friends and allies, for all politicians, scientists, doctors, psychiatrists and psychologists who have stood by our side for decades, and for everyone who has recently joined us: I admire your courage. You have truly changed something for M.E. You have given M.E. strength. You have saved people with M.E. You are saving me! I am forever grateful to you!!!
For all healthcare professionals, scientists, politicians and government institutions who know how much pain and despair the healthcare system inflicts on us as PAIS patients: why are you not more shocked, more outraged, more furious about all this preventable suffering? Why are you not more outspoken in your criticism of your own government? Why do you not speak out?!? What on earth are you waiting for?!?!
The silence is killing M.E.
Your silence is killing M.E.
Silence is death!
ACT UP NOW!!!
https://www.hetpaisprotest.nl/
