7 Reasons for Why It’s #TimeForUnrest

Categories: Featured opinion, Opinion

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.

Categories: Featured opinion, Opinion

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6 comments on “7 Reasons for Why It’s #TimeForUnrest
  1. Eimear Forde says:

    Thank you so much. Please keep fighting for us. Will donate later today…please keep up the excellent work, we want our lives back so badly. I am the same, in my dreams I am well. I love going to sleep at night, I can escape and forget for a while.

  2. Lara D Henderson says:

    Great article Ben. I’m so sorry. I understand the fear of having children. It is terrifying to worry about Alex getting sick. Its my greatest fear. He is scared for me (he can talk to his Dad more than to me though I found out) and I am scared for him. It is SOO hard not to be resentful that I wasn’t diagnosed in the five year window and I probably would not have had children either if I had known. Alex would have a sibling but my pregnancy was too hard bc of the migraines amd not even being able to take aspirin I couldn’t do that again. Got very little empathy for tjpse even. Just watching him very carefully bc he has not bern as healthy this past year or so and hus headaches have started to. I was 17 when the migraines were triggered. He will be 17 in November. Dr Bullington gave us an immune system supplement for him but i think he hides his symptoms from me just as I have done with him, to not worry each other. My heart goes out to you! I hope you are not alone up there! Lots of love and hugs amd spoons and then everyone reading this whose lives have been invaded by tjis evil disease! The anger and tears seem to alternate depending on the day but I’m getting a better handle on that each day but if my son gets sick there will be no more ‘playing nice’ with these doctors who refuse to listen to their patients or anyone else for that matter because he is and always will be more important than me, even if he does not get it yet…some day he will understand my overprotectiveness and my worry and why Ive done the things Ive done. He understands the illness better and is communicating much more love to me now ‘via text’ as his generation does. Someday he will get it more but it better not be because he gets sick! Thank you for being you and to all of you for giving me a community of ‘my people’ I never thought I’d find,making our disease visible and saving lives our lives in the process! We love you!

    1. This article was written by Christina Baltais. Sorry for the confusion. I had to upload it from my account due to technical difficulties Christina encountered.

  3. Lara D Henderson says:

    Oh I mean thank you Christina! I keep getting thrown off by the By Ben posts which must just mean he is the one who posted it not wrote it! It is an awesome article Christina! Thsnk you so mych!

  4. I just realized the link for Jennifer Brea’s reasons for why its #TimeForUnrest isn’t working. I’ve attached the link below, be sure to check them out:


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