Millions missing

Today, many ME patients, families, and friends are joining around the world in #MillionsMissing protest. This event was organized to remind people of millions that are missing due to/from ME. #MillionsMissing signifies not only millions of patients around the world who are missing out on their lives, but also millions of research funding that is missing for this costly and disabling disease. For your reference, billions of dollars are lost each year due to ME in the United States alone, but only about 5 million dollars has been allocated annually for research by the government. Male pattern baldness received more money.

I am one of #MillionsMissing from school. I have been on leave from my graduate school because I could no longer continue to work on my degree. My B.S. in geophysics is just an expensive piece of paper right now.

I am one of #MillionsMissing from work. I have to rely on my husband financially while contributing nothing to our household. It hurt my ego, but I didn’t have a choice. I loved doing scientific research. I would like to think I was good at what I did, and really miss the intellectual stimulation.

I am one of #MillionsMissing from family. I so wished to be there to watch my nephew grow up. I was there when he was burn a few years ago, but I’ve missed every mile stone of him growing up. I have not seen my grandma, who actually raised me, in years. Unless my health dramatically improves, I will not be able to attend my cousins’ weddings. The worst of all for me is that our own family plan is on indefinite hold. I really miss our child that we do not have.

I am one of #MillionsMissing from travels. We planned a trip to Disney World a few years ago. We postponed it multiple times, saying we’d go when I get better (before ME, my chronic back and joint problems meant hours on feet would be difficult; I was doing PT to help). Now we wish we just took the trip even if I’d needed to rent a scooter. There were many more traveling opportunities while I was still in school that I had to give up due to my health. Now, my only travel recently was lying down in my car while my husband drove several hours, and staying in the hotel the whole time except for a few hours to go to the bowl game. It took me a few months to recover from that. I once went on a backpacking trip for six weeks alone. It was a trip that forever changed me. My memories from the trip is fading away. Will I ever get to experience the world so freely again? 

I am one of #MillionsMissing from the protest. There is a live protest an hour away from me, but I am unable to attend. I will actually be missing from doing any related online activities because I have a procedure scheduled. Luckily (?) for me, I have another medical problem that is compounding my ME symptom, and this procedure is an attempt to help with that other problem. If I am lucky, I actually only have mild or moderate ME and I would be able to return to work and school. If not, I would have to wait for ME research to progress enough to have treatment options. 

There are so many small things and big things I can list under #MillionsMissing, and all other ME patients would be sharing the same sentiment. I am not trying to earn pity and sympathy from people by talking about everything I’m missing out on. Rather, I would like to remind people that this is normal for patients with ME at the moment. And we need everyone’s help to change it. 

I walked around for six weeks despite my  back and joint pain, because I was used to pain and that was something I could push through with my will and determination. But if I tried the same thing with ME, I would be left with severe relapse that I may never recover from. We, patients with ME, are left with no choice but to preserve whatever health we have left at the moment, because we need to survive for that one day when several treatment options would be available to help us manage our disease, or even a cure. Will you help us bring that day forward, even one day sooner, by advocating for us? Remember, there are #MillionsMissing, and even just one day we get back is millions of days saved from missing.