7 Reasons for Why It’s #TimeForUnrest

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.


8 thoughts on “7 Reasons for Why It’s #TimeForUnrest”

  1. 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

    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

    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’m 70 yrs. old & began this journey, when I was 42, although the CFS/FM part of it was diagnosed later. Let’s say I was between 38-40 when it began. I also have concurrent conditions of the brain & spinal cord. Arnold-Chiari Malformation & Syringomyelia. Only found b/c the MRI had just been invented. If not, I’d be dead. I never recovered from spinal cord surgery (have non-functioning shunt in my cord). I can’t tell you what a devastating surgery it was & it was non-functional in 4 mos. My cyst continued to fill & I had successful brain surgery 5 yrs. later. However I never, ever returned to “me.” Things went downhill as I went to Myofascial Therapy 3 times/wk. for approx. 2 yrs. I was later sent to an Osteopath who set me on the path to healing. At the same time I began many supplements after reading & putting a lot of thought & effort into it. No Internet back then. Found what I thought necessary, and have had good success with things like Mg. especially. Married to a wonderful man, 2 grown children, 4 grands. Sadly I’ve never been able to lead the life I mentally wanted/needed. Immerse myself in books of all types…you name it, I can get lost in studying about it. My salvation. I’m no longer bedbound, but definitely housebound. My hubby has been my rock. I worry a lot about passing this on to those I love….or having a genetic component that will show up in a grandchild. B/c of damage from other conditions I couldn’t even hold my grandchildren as babies. Have missed so, so much (as you know), but am also sad about those of you who are so young that you haven’t had a chance to experience life. I have few friends left…how many times can someone hear “No, I can’t,” before giving up? Very fortunate with my neurologist…30 yrs. ago he recognized this & gave me pages of info. I don’t know what I’d do without him. At least I knew. I was always busy, busy, busy & had a great life. So why would I fake this as so many have had to deal with? I remember Alpine Village at the time it was in the news. Prior to my diagnosis (had the surgery, so that was the priority then), I was also diagnosed with a pituitary tumor (controlled by med). I think they’re all somehow linked. Had Hong Kong flu when I was 14. Incredibly ill & was still wearing undershirts to stay warm all that summer. I’ve wondered if the virus entered my body then..who knows? Have severe scoliosis & had lots of radiation as a child…any connection? Had extreme pain & gabapentin was the first breakthrough in the suicidal pain (which I tried). Love my family dearly, but the pain & exhaustion were too much. Also worried about being an anchor on my family. I’m resentful towards our govt. for doing nothing, CDC, other Dr.’s of mine who don’t take it seriously…a lost part of my life. I’m also grateful for having a bed, warmth, my hubby especially, and my supplements & meds. I’m sick, sick, sick of drug addicts getting all the attention when they stole our ‘scripts, sold them, etc. And now they’re the ones who will get help!! I’ve lost family members to drugs, so I’m not without empathy. I don’t hear one peep about why they made themselves addicts at ages 12 & up. If jobs can’t be found in areas that have gone under…you move, just like we did years ago. These areas won’t recover, so why waste money on keeping people alive in areas where nothing will change for them? OK…that was a rant, I guess…sorry! I also had 3 rounds of shingles 5 yrs. ago. I mean one after the other & was bedridden for mos. Check with your Dr. & get a shingle shot so you can at least avoid that. A new one is coming out @ 90% effective. The old one is 50% & is for 5 yrs. only. Do not do it without talking to your Dr. None of mine could decide if I should have the old one or not. I finally did it on my own. Not for anyone under 50 at this point. I’ve been involved with SM/ACM groups off/on for yrs. We worked by phone for a lot of it. I wish each of you better health & a cure. Too late for me, but then I had many yrs. in which I lived. Don’t give into depression..do as much as you possibly can each day. If you have anxiety, do something about it…everything is so much worse with it. I can’t talk much these days without wipe-out exhaustion hitting me. Feel bad for my hubby, but he chooses to be with me & for that I’m grateful. On the whole I’m most blessed with my life. I had one life traded in for another. From the 2nd I learned things that tore me upside down, and also made me realize that I learned more, was a better, kinder person (although had always been kind) than before and this: Life does go on. It’s painful in so many ways, but with that pain we realize that so very little is needed: A bed to sleep in, food to eat, a roof to keep the elements away & someone to love. I wandered in a spiritual desert always looking for “The Answer.” There isn’t one (as far as I can tell). I’m open to anything and I’ve found peace with it. Thankful that I wasn’t the major breadwinner, although I’ll always feel guilty for being gifted with my illnesses. I’ve helped many, many people over the years & for that I’m glad. Now I’m too exhausted to take on more…I just walked away from helping one day. Just too overwhelming. There weren’t happy endings in any of my illnesses. Always love your family, your pet, read (if you can…books help take you anywhere), have a psychologist (if possible. Should have done it myself when first diagnosed, but no energy. My children really needed it.). Thanks for reading! May your road become easier to travel. May you find hope (if you’ve lost it). Love comes in many forms…remember that. Surround yourself with as much of it as possible. Finally: Thank-you Jennifer Brea & your husband, Omar, for making this happen. Of course, all the other people who were involved…you’re all one of our greatest blessings. You humble me.

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