Chilli in the world

I just saw an article from the Huffington Post about the Chilli M.E. Challenge, covering the challenge taken by Drs. Lipkin and Hornig at Columbia University (video) Center for Infection & Immunity (CII). It’s exciting to see this challenge pick up momentum, and ME receive positive media coverage.

ME patients have to pay for every little thing that involves any kind of effort, whether we are conscious about the expenditure or not. Just simply being awake has a toll, which I didn’t realize until recently because before my ME got more severe, my daily budget was sufficient enough for minimal functioning. The price each patient has to pay for any activity (or non-activity) is different depending on the disease severity and presentation, but one thing is universal: if we spend more than we have, we have to face PEM (post-exertional malaise) and potentially risk our long term health.

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My M.E. Story 2

When I posted my first M.E. story video recently, I didn’t realize I was was going through another viral reactivation. I initially thought I was just dealing with a prolonged, severe crash. It turned out to be another viral reactivation episode for me, which meant substantial exacerbation of all M.E. symptoms. I didn’t realize this until I started getting new pain from shingles. In retrospect, I should not have done any kind of “strenuous activities” such as making videos and rest in bed as much as I could. I should have known better to do nothing while feeling so sick to need IV fluids. Oh, well, hind sight is 20/20. I was just enthusiastic about participating in M.E. awareness movement (especially Chilli M.E. Challenge), and wanted to act on it, especially because I was feeling lousy that week.

After noticing the nerve pain that I associate with shingles (I can distinguish it from postherpetic neuralgia), I panicked. It was my 5th time since last October, and with each viral reactivation (shingles is caused by the reactivation of chickenpox virus, or varicella zoster virus), my M.E. has been worsening dramatically. At that point, I was already mostly bed-bound  and experiencing shortness of breath just from sitting against pillows. I knew I still had not hit the bottom yet based on past experience, so I went to the hospital, hoping they might be willing to do some aggressive therapies to minimize the damage to my body.

Now I am back home, still bed-bound, after spending 8 days at the hospital. I wonder if I never went to the hospital and tried to just rest at home, I’d at least be able to stand up for 30 seconds to get to the restroom. But I can’t play what ifs and the reality now is, I am a severe M.E. patient. While at the hospital, I also tasted what it would be like to have very severe M.E. During those moments, I was practically paralyzed and could not eat, drink, or speak. I think it really solidified my resolve to be an active part of M.E. community. I am not going to wait passively hoping for a cure, knowing in the future, my mind could be trapped in the shall of my body.

I recorded this video on my last day at the hospital. It’s been a few days, and I’m just getting around posting it. I am so thankful about tech gadgets that let me still be a part of the world even if my body is confined on my bed. Please watch my video posted below, and make a donation for M.E. research.

For donations:

GoFundMe for Chilli M.E. Challenge
End ME/CFS Project @ Open Medicine Foundation
CFS Research Center @ Stanford

For UK: Invest in ME

After thought:
You will see me pause frequently while talking and it is due to cognitive impairment caused by M.E. My language errors (that cannot be blamed on English being my second language!) have become more and more noticeable past couple of weeks as my M.E. worsened. If you see glaring errors from anything I write, you know why, so please don’t judge me! It is difficult enough to write while stuck in bed and getting drained just for being awake, so I apologize for being unable to proof read my writings.

Please check out #chilliMEchallenge for other stories and funny videos!

Message to fellow Brown ’10

Dear fellow Brunonians,

Due to my illness with M.E. (myalgic encephalomyelitis), I cannot attend our 5th reunion this year. ME/CFS is a neuroimmune disease with a wide range of symptoms, not just fatigue. I am now housebound and unable to travel anymore.

For more information on ME/CFS please visit:
http://www.cortjohnson.org/about-chronic-fatigue-syndrome-mecfs/facts/
http://www.cortjohnson.org/blog/2015/05/12/the-awareness-edition-mecfs-and-fm-international-awareness-day-on-health-rising/

M.E. affects the lives of millions of Americans, but it is severely underfunded by NIH, with annual funding of $5 million, compared to other diseases like SLE (lupus) or MS (multiple sclerosis), both of which receive about $100 million annually (source). 

We, patients with ME, need your help. Please participate in ‪#‎chilliMEchallenge‬ so that one day, I can join you at our reunion on College Hill.

For more info on the campaign, please visit the official website:
https://chillimechallenge.wordpress.com

You can watch my personal My M.E. Story for #chilliMEchallenge in this blog.

You can watch collection of some other participants from the official Chilli M.E. Challenge page on Facebook.

Thank you!
-Marina

Please watch my video message to you:

For donations:

GoFundMe for Chilli M.E. Challenge
End ME/CFS Project @ Open Medicine Foundation
CFS Research Center @ Stanford

For UK: Invest in ME

My M.E. Story

I’ve been sick with M.E. for past three years and it has transformed my life completely. We don’t know what’s causing M.E. and the disease itself is poorly understood.

M.E. is one of the most underfunded disease for research by NIH. So we are now turning to the power of public to help us understand this debilitating disease.

For #chilliMEchallenge, I have nominated people to record the video of them eating some HOT peppers, with all the aftermath of the BURN to raise awareness of M.E. It is not safe for me to eat spicy food (I can barely eat any food), so instead I created “My M.E. Story” for you to watch.

If you want to watch some hilarious, touching, or impressive videos of people eating spicy peppers or hot sauces, please follow the hash tag or visit the official Chilli M.E. Challenge Facebook page.

I noticed that I don’t sound clear in the video, and Steve pointed out my eyes (and cats….) were distracting, and it’s due to my M.E symptoms. It may look like a poor quality video, but it took a lot of effort for me to create it, especially as I’m going through a flare up at the moment.

Please consider making donations even if you are not participating in the challenge. It will mean a lot to millions of patients and their loved ones.

My preferred donations are:

For more information on the campaign, please visit:
http://chillimechallenge.wordpress.com

Links to my videos:
http://youtu.be/5AQ_qJMYeNw  (Full 10 minutes)

http://youtu.be/UEDHDrMO64U  (Cut version)

For donations:

GoFundMe for Chilli M.E. Challenge
End ME/CFS Project @ Open Medicine Foundation
CFS Research Center @ Stanford

For UK: Invest in ME