You Know What To Do

(Or if you don’t, it’s Signing this petition..that’s what you’re supposed to do..just in case there is any misunderstanding there. OK then..)

Friends, Families, Duders,

This is one of the most important posts I’ve published here, and I need your help. It’s been a very sick winter/spring for me and I’ve worked hard to try and stay positive, maintain hope, and keep from getting overly discouraged. I don’t always succeed in this, but I try my hardest and I have a lot of reinforcements: my dog, family, loving friends, and funny internet videos that truly sometimes help shift me into a lighter shade of blues. I found that one another way for me to maintain hope and stay positive about my life is to at least try and influence change in regards to how this disease is treated, both socially and federally. Things have already begun to change in a few ways in just the last few years, and I have always held onto the hope that I will see a cure within my lifetime.

Yesterday was particularly hard for some reason. Physically things have been roigh, but emotionally I was really feeling it– all of it. Sad, mad, hopeless and discouraged. My phone rang and it was my sister calling, but I didn’t feel I could even get it together enough to pick up the phone and say that sinply, I was a mess. So I texted it instead and after going back and forth a while, I decided there Was this one thing I could, something I’d been putting off for various reasons, none very good, that could help pull myself out of that dark hole, and that was to invest myself into a cause that may have the possibility of producing real change, of making a vital impact on CFS/ME. I think and pray often that other people will do things and enact change and that I will eventually reap the benefits from them. But that’s a somewhat limited hope. And it leaves all the possibility and power out of my hands, when the truth is we all have the means to effect change (even be it extremely small) if we believe in it and work hard enough. That’s what inspired the campaign I wrote using the platform change.org, which helps deliver our message in a very efficient way. I like that it gives a chance for all our voices to be heard, bed-ridden or not, and only requires a few seconds and click of your mouse t have it be heard.  It’s a great alternative in lieu of a “March for CFS Awareness and Funding!” I think we all know how that would turn out…

We’d start out like “Yeah!!! Race for the Cure!! Screw CFS!!!

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Let’s Run and Raise Some Money People!
But then in a matter of, oh I don’t know, 5 minutes..the scene would inevitably change.

So, since a “Race for the Cure” is not exactly in the realm of possibility for a lot of us, but access to the power of the Internet is, I know that this is a great option for us. We’ve just got to acquire as many signatures as possible. Signing this campaign, which asks the NIH for a larger chunk of money to be allocated toward CFS/ME research, is a way to get this message across quickly and with bigger impact. I also like this methodology, because each time someone signs the petition, an email will be sent to the Head of the NIH and the Secretary of Health and Human Resources, and these are the people who have huge influence on how this disease is treated at the CDC–in particular how much money is dedicated to its research. This is our chance guys, so please please please, sign the petition and share it if you’re feeling extra awesome. I have copy and pasted the campaign here so you can read it, but you’ll need to click the link at the bottom of the page in order to sign it. That’s all it takes, the click of a button.

I thank you all in advance for taking part in this, and I truly believe if we circulate it in a wide enough circle, we can influence some major, desperately needed change. But we have to act. So sign it! Then get back to dicking around on the internet. I mean working, or whatever you’re up to. OK, here it is.

Petitioning Director of NIH Francis Collins and 1 other

Demand Increase Of Research Funding To Help Cure “Invisible Disease”

All I want to do is take a bath.

Before I became sick, that wouldn’t be so hard. Now walking is hard. Standing is hard. Some days, I don’t leave the bed and weeks can go by without my leaving the house. I call in sick to doctors appointments and take between 25 to 30 pills a day just to manage my symptoms, but they do not help the disease. I am 31, and I wasn’t always this way.

My heart is heavy knowing that roughly 3 million other people in our country are suffering from this same disease: Myalgic Encephalomyelitis. ME/CFS is a complex, multi-systemic illness that causes a lot of pain and disabling symptoms, specifically severe weakness and crippling fatigue brought on by even minor exertions–taking a shower, walking to the mailbox, or vacuuming the living room can land you in bed for days. There are currently no FDA-approved treatments and no cure, so we are left fighting this crippling disease in the dark. I was diagnosed with this illness at age 9, a happy gymnast at the time, at which point very little was understood about it and we were left with few options. I slowly regained much of my strength but at age 26 I suffered a severe relapse, could no longer work or take care of myself and had to move in with my parents. Despite twenty years having passed since my initial diagnosis, there are still no FDA-approved treatments and no cure. How could that be?

In a word: interest. In a bigger word: money. For more than a decade, ME/CFS has lingered near the bottom of the Allocated Funds list at the Center for Disease Control, never acquiring more than $6 million annually for research. This may sound like a substantial amount, but to provide some context, Male Pattern Baldness receives $12 million a year, so it’s easy to see that our meek amount is on account of low priority, not the result of insufficient funds. This is why I am asking the director of the NIH and the Secretary of Health and Human Resources to increase the funding allotted to the CDC to $100 million per year to research this devastating disease, so that the millions of people afflicted by it who’ve lost their jobs, families, and overall livelihood might finally have a chance at a healthy life again. Whether the lack of action originated from the stigma of the inaccurate, alternate name it was given in the 80’s, (Chronic Fatigue Syndrome) or the fact that it effects mostly women, I don’t know or care anymore. All I know is that we’ve waited and suffered long enough. It’s a time to come together and solve this health crisis, and I know that we are capable.

There is no better time for these agencies to step in and deliver on what’s been promised. The NIH received a $2 billion dollar budget increase this year, and two independent reports from the Institute of Medicine and the Pathways to Prevention have emerged recently calling for An urgent increase in research funding for ME/CFS, both noting how dire and overdue this situation is.

Governing agencies have always played a huge role in how diseases find treatments and cures. Similar illnesses like MS and Lupus are allotted $100 million each, per year, and collectively they effect less people. Due to these higher funding amounts, both illnesses have diverse and far more effective treatment options under their belt. This is how it’s supposed to work, and I know the current SHHR and director of the NIH are the right people to step in and change the game. We can do better, and so we should start now.

I used to have a pretty outgoing life. I was able to travel in college, fall in love, live in France, enjoy SEC Football, and graduate. Now most of my days are sedentary,  spending a lot of my time in bed with my dog and best friend Monty (see photo)– reading, writing, or sleeping. Sometimes it feels like life is passing me by right outside the window. Truthfully I am lucky when compared to the many people who are sick with ME/CFS and don’t have the help or resources that I do. I especially write this campaign with those extremely ill people in mind–too sick to have their voices heard and suffering alone. The point in all this is that it doesn’t have to be this way. This is something we can change. The country loses billions every year in lost productivity due to this illness alone, and so many of us would want nothing more than to enter the workforce again, if we could only take a shower without having to spend the next whole day in bed recovering.

Please help keep the promise of bringing this invisible disease into the light and dedicating the much deserved attention and funding to it that it’s lacked for all these decades. By signing you will help give millions of sick people hope that they are not forgotten, and show our governing institutions that we trust in them to step in and follow through with improving the health of millions of people, many who are desperately sick. I know with the proper resources, this is something we can treat and ultimately solve. Please sign and share this petition. We can do better, and the time to start is right now.

Thank you.

Mary C Gelpi (and Monty)

#WeCanDoBetter

Click Here to Sign

 

This petition will be delivered to:
  • Director of NIH
    Francis Collins
  • Secretary of Health and Human Services
    Sylvia Burwell

Click here to sign the petition, and copy and paste the address below to share it any way you want.

https://www.change.org/p/ask-nih-for-increase-in-funding-to-help-cure-invisible-disease

Again, thank you. #WeCanDoBetter. So let’s do it.

Health, Happiness, CHANGE

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4 thoughts on “You Know What To Do

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