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Severe ME/CFS Awareness Day 2023

(I am currently in a relapse and only able to write this on Ativan)

Today we honor those ME/CFS patients who have suffered the most, been neglected the most by the medical and scientific communities and society at large. Whole, beautiful people who have been intentionally neglected to the point that they are silenced, alone, without proper care and profoundly and needlessly suffering. Most are barely alive, living alone in tiny corners of the world wherever they can find. This is criminal neglect being committed by the entire world, and every single country in it because ME/CFS is a curable disease. And I promise you, someday it will be seen as such.

Most people don’t know this, but there are 2 stars in the night sky devoted to ME/CFS patients.

There is a Dark Star and when every ME/CFS patient dies, all the suffering, pain, desperation, heartache they endured throughout their lives goes to this star and is held there.

And there is a Bright Star, that holds all the dreams, loves, aspirations, and life long goals lost when an ME/CFS patient dies.

I could point these 2 stars out to you, but I haven’t seen the stars in 11 years.

Someday there will be a cure and the Dark Star will implode and release all of that suffering to so those lost patients can be at peace. And the Bright Star will shower us with so many dreams, loves and pure beauty the world will light up for weeks.

Until a cure is found, we must fight for the world to recognize ME/CFS as a legitimate illness and treat us like human beings instead of dogs begging for scraps. We are human beings. No matter how they treat us, we are human beings. And the whole world is guilty of criminal neglect and abuse.

It is important to remember this on ME/CFS awareness days. Remember our suffering and write about it. But let’s be honest, it is hard to get these words to reach outside the ME/CFS community.

So I want to start a new tradition on Severe ME/CFS Awareness Days that I hope this community will keep doing no matter what happens to me (I’m not planning on going anywhere ;)

Write about the injustices we face and hope these words reach outside this community. We can never stop doing that. Because someday they will see us. And even if our words don’t reach far at the time, it is important to have a record of us telling the world what is happening to us and the lack of any response from anyone dating back years.

But this Severe ME/CFS Awareness Day I want you all, in addition to trying to get others to get us the help we need, I want you to take action yourself and do something to help a severe ME/CFS patient.

Right now. Today.

One of the worst parts about severe ME/CFS is how isolated it makes you. There is no way to explain the sense of isolation severe ME/CFS patients feel - like the whole world has forgotten them or doesn’t even exist anymore at all.

The leading cause of death from ME/CFS is suicide. Part of that is from a lack of hope of getting better, but part of it is loneliness and isolation. Which we as a community can do something about right now, today, without any help from the government or societal systems that have failed us.

Every Severe ME/CFS Awareness day going forward I want everyone capable, patients, caregivers, supporters, doctors, spouses, loved ones, to find a severe ME/CFS patient on social media or elsewhere and reach out to them. It doesn’t take much to make someone feel seen and that someone else out there cares about their life. If they have a social media profile, look at it and find some things you like about them or their profile.

And then just reach out to them and write them:

1) Introduce yourself, and just say hi and who you are.
2) Empathize with what they are going through
3) Tell them something you appreciate or respect about them
4) Tell them that they are not alone and that you are thinking about them
5) Tell them that you hope things get better for them soon and remind them that all things change and that just as they got worse they can also get better.

This simple act might only take you 5 minutes, but it could be the difference between that person killing themselves or deciding to hold on for another day, week, month, year.

A cure is coming, I promise you all. And we need to take care of our community and try to stop as many suicides as possible and try to get as many ME/CFS patients over the finish line as we can. Bringing back their lives and bringing back the world to them.

Let’s try to stop letting ME/CFS patients go to these stars of darkness and light and keep them on this earth where once cured, they can thrive, love, and run free like they were born to do.

Trying to spread awareness outside this community is important, but so is direct activism within this community.

Please, let’s do this every year on Severe ME/CFS Awareness Day. Anyone able to, "sponsor" a severe ME/CFS patient and reach out to them please stop what you are doing and do so now.

We may be neglected but no one can take away the love we have for each other, and we have the power to spread that love to those who need it most.



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