To listen to a recording of the reading click here.
The #TimeForUnrest campaign has officially kicked off, and these are some of my reasons for for why it’s #TimeForUnrest.
It’s #TimeforUnrest because…
1. People are dying.
Vanessa Yeuk Lin Li, Emily Collingridge, Lynn Gilderdale, Judith Curren, Jan Murphy, Julia Revill, Jonathan Hales, Fiona Smith, Silvia González Rodríguez, Chardale Dotson Irvine, Nicola McNougher, Emily Gregg, and Thomas Hennessy.
This is just the tip of a giant, giant iceberg. There is a 6 fold increase risk of suicide in ME/CFS; this is a health crisis. Those with M.E. who commit suicide do so out of desperation and prolonged severe suffering. This fact in and of itself should “be enough” for change. Elie Wiesel says it best “…the opposite of life is not death, it’s indifference.” The lack of respect and attention this disease receives is reflected in the number of lives ended, and will continue to do so unless change is made.
2. 15-30 Million people WORLDWIDE are suffering daily. I am one of them.
“[ME/CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995).
3. It would save the government money.
It makes more sense addressing ME, than continuing its longstanding denial and neglect from a financial standpoint. Understanding and finding effective treatments would mean millions of people would not have to rely on disability (for those fortunate enough to receive it), and could become participating members in society. ME is going away just as much as MS or AIDS did. Lobbyists for these diseases petitioned for change until they were heard, as we are doing now.
Creation of a framework capable of providing for our health would save governments millions of dollars, if they would just adequately fund research for us.
4. I want to feel well rested again.
In the recesses of my mind, I remember what vitality feels like. In my dreams at night, I experience what vitality feels like. I am running, moving, sometimes flying freely; my body uninhibited and boundless. When I open my eyes, I am confronted to the reality of my circumstances; I am living in a perpetual straightjacket. Grief and a sense of hopelessness bombard me in succession. I have to consciously hold space for hope. Hope that I will feel healthy again, and that we all will. I want this hope to become our reality.
5. I don’t want to be afraid of having children.
I’m afraid because I could pass this disease onto them. There appears to be a genetic component that is not well understood. Is it passed solely through a mother’s mitochondrial DNA, or is it more multifactorial? All I know is that this disease has affected generations of my family —my father, my twin sister, and I. There’s also the shift from cell-mediated immunity toward humeral immunity during pregnancy. I have both seen and heard this immunological change creating a temporary remission, a permanent remission, or a progression of this disease in mothers. I can’t help but feel like I’m gambling with my body, life, and potentially someone else’s. Then there’s other minor details— like how can I raise a child if I’m chronically ill? I don’t want to be this afraid of starting a family. We need answers, and we need treatment management of this disease.
6. I don’t want to hear another story with the word “hysteria” and/or “conversion disorder” and my disease in the same sentence again. Ever.
There needs to be a stop to institutionalizing ME/CFS patients in mental health facilities. There needs to be a stop to the shame, blame, and stigma. We deserve a formal apology from society, the medical community, and our governments for disbelieving and disrespecting us for all these years.
7. Enough is enough.
We deserve justice.
These are just a few reasons, from a mountain of reasons for why its #TimeForUnrest. You can watch Jennifer Brea’s reasons here, which touch on research, poverty, and other critical issues. Be sure to share your reasons on YouTube or post a photo on Facebook or Twitter using the hashtag #TimeForUnrest. Let’s make this campaign as big and as loud as we can.
It’s #TimeForUnrest because I want a day to come when people will speak about this horrendous disease and how it was disbelieved for so long. How many brave people assembled and fought for change, even if it was at the sacrifice of what little quality of life they had. Even if it meant facing a world that met them with distain and disregard. Some lost their lives in the fight, so that others could live and experience the freedom they sought.
Please visit timeforunrest.org to find more ways to get involved in this global campaign for equality.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the