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M.E. Matters

It’s the first day of M.E. Awareness Month 2023. It’s not only a month to make others aware of this debilitating disease. It also serves as a personal reminder that despite 16 years of battling this disease, progress in research, finding treatments, and management has regrettably been incredibly slow.

When I went to high school, I also started my ballet education. I had to stop all other sports like judo, tennis, and swimming to prevent potential injuries. Although I was disheartened about it, I was also determined to become a dancer. I intended to take up other sports upon retirement. I loved martial arts. I liked judo, but I also missed kicking and jumping. I was looking forward to starting karate classes and picking up tennis again. I don’t even know if I ever learned an overhead serve, so there’s still a lot to learn.

Before this year, I was too ill for approximately five years, which prevented me from even thinking about anything related to dancing. A mixture of it being too far of a distance from the life I was “living,” and it being too painful. On top of that, I could not tolerate watching moving images on a screen, listening to music or sound, among other stimuli. Since I moved to a quieter place, I have been able to watch some short videos of dance, sports, and general life again, and that heightened my own awareness of the life that I unfortunately have lost. Who knows for how much longer?

My life is just one of many millions worldwide that are suffering. They’re suffering in silence. You often can’t see it on the outside, especially not on those who have a milder form of the disease. Those like me who are severe are hidden away from society. At home, often in darkened rooms. With earmuffs, earplugs, and shades. Some are entirely dependent on others for care. Some are even too ill to roll over in bed by themselves. Are tube-fed, but with very little if any medical help.

I’m saddened by all those people who are missing from life, especially for the children and people who became ill as a child and are now in the wintertimes of their lives. Not just because of the disease. Disease is an unfortunate aspect of life, but the fact that it has taken this long to take this disease (more) seriously. To take the patient community seriously. Although some progress has been made in recent years, to this day the patient community continues to be subjected to disbelief and dismissal, which impedes the much-needed progress in science and healthcare that should have been made decades ago.

Due the substantial amount of people with Long-COVID fulfilling the criteria of M.E., we’ve been painfully forced to face the facts that we still have no effective treatments or a solution for this disease. That those in charge who should have taken action royally messed up. For how much longer must we continue to ignore the lives of people who are struck by this illness, and in doing so, miss out on the potential and promise of individuals who could contribute greatly to society?

I wrote this message not to ask for pity but to make you aware of our existence. Living with a chronic illness or disability teaches you lessons that are hard to grasp if you’re able-bodied. By reintegrating people affected by diseases like M.E. into society, we can enhance our collective sense of well-being.

It’s a place where caring for others in need and promoting inclusion can help us appreciate what truly matters in life. A place where we ensure that we don’t repeat past mistakes and deny millions of disabled people the help they desperately require. A place where we all have the energy to make those in power actually give a damn because that’s what’s, considering there’s yet another ME Awareness Month, unfortunately still urgently needed. 

Thank you for reading, caring, and seeing M.E.!


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