Cutting Down Trees Won’t Stop the Wind

77969e290ad545088eeb06c11ef0ce88When I was little, I thought wind was created by trees. I watched the branches bend and break sometimes, as I felt the currents move over and past me, blowing my hair around like I was a passenger in a convertible. A very strong force, what those trees could do. It wasn’t so long before I learned that wind existed in the desert. Whoopse. Naturally I then learned about currents and the true science of wind. Trees were indicators that it was windy, but were themselves were not creators of the wind. Duh.

So, how does this tie into the thinking around a disease I have? And secondly, why am I always writing about this damn disease?! So boring, Mary. But hey, this is my notebook after all. But mostly because there remains a lot of thinking to be done around this subject. The public’s view in this case matters, particularly the medical establishments. *Inconsequential anecdote, it’s very windy out here! It’s also really hot and I’d rather write indoors, but Monty made me come outside. In this case, the wind helps.

So, imagine for a moment that wind is a disease. It’s not so hard to do—sometimes you can feel it wholly, you can watch the effects of its existence in past and present form, you can even predict it to an extent, but is of course itself, invisible. That’s the start.

A powerful and controlling school of thought pervades many minds surrounding this disease; it confuses the behavior of trees as the cause of wind. Or it says that the reaction of trees to this wind is maintaining the wind itself. In other words, doctors—mostly psychiatrists, a lot of them British—are thinking the way I did when I was four. OK six. You get the idea. 

This dominant school of thought looks at the symptoms of this wind, some of which can be quantified through tests, some of which are subjective (self-reported) in the absence of diagnostic material and a lack of conventional biomarkers, and a lot of it hiding in plain sight somewhere, yet to be found. We’re getting closer, but that’s beside the point. 

Instead of seeing tree branches swaying violently as an effect of wind moving through them, this school of thought sees the behavior of trees as having something to do with the cause or sustaining of it. A common case of conflating cause and effect. Hence, their idea is to cut off the branches. Or in other cases, to just chop the tree down. So they do it. They take a chainsaw and remove the branches, one by one, and then stand outside next to the stripped down, naked tree, or in more unfortunate cases, the mere stump that remains. Outside, what happens? A blustery wind snakes up through the air, kicking up the leaves around their feet then letting them settle, blows their hair around the way a roller coaster does. Sometimes it makes a haunting, high-pitched howl. Still unseen, there’s no disagreement that the wind is making a nearly aggressive presence. In spite of all that chopping! Other times it arrives as a gentle breeze. In any case, they witness the wind despite their efforts. And for the little value it’s worth, the tree stumps says “Just an FYI, I um, I can still feel the wind.” The tree stump is generally ignored and a bird then craps on it. 

But they try other versions. They tell the tree stump to quiet his thoughts, imagine no wind is blowing. Or accept the wind, and live life as he always did as a tree…with branches…and leaves, despite not having those things anymore. He’s been reduced to a tumbleeed and being asked to live as a 30-year-old flourishing Live Oak. In spite of feeling like a tumbleweed, he attempts to live outside in the wind. He’s told to go slow, be cautious. But it doesn’t go well.

The wind blows on, the psychiatrists scratch their heads. They go back to the drawing board. Cutting off the branches, chopping down the tree, and still these powerful gusts of wind! It’s hard for them to wrap their heads around, and they’re not the only ones. This is a complex wind with a lot of strange behavior and variables. Particularly, standing in the middle of the desert where a wild wind blows, so forceful it’s difficult just to walk, none of it seems to add up.

Frustrating as a disproven hypothesis can be, it doesn’t have to be that way. It’s still an answer. A real scientist knows you go back to the drawing board despite you’re hypothesis being “wrong” or “right”, or more accurately, true or not true. You don’t throw it out, but by ruling out one idea, you make more room for the true one to emerge, right? It’s all useful information. Knowing what works and what doesn’t. For instance, Well my humble colleagues, it would appear the behavior of wind is not based on the behavior of trees. Let’s look into one of a thousand other ideas we have. It would seem that’s how progressive science would go. 

But…

Alas…

No.

Back at the drawing board, they can’t give up the ghost. They’re stuck on the idea that trees either make the wind or maintain it somehow. They’re convinced that stripping the trees, changing the trees thoughts, encouraging the tree to do things he’s hardly capable of, even if just slowly at first, will eventually make the wind stop. In the meantime, forrest are demolished, the wind blows on.

Hopefully, one day, this school of thought will be carried away like a fine dust caught up in a large gust of wind and patients with MECFS won’t be subjected to it again. Like in Aladdin when he drop kicks the magic lamp containing the evil genie into some other universe. It’s not that what they’ve found can’t help the people with this disease. Every finding is useful in it’s own way. But something like psychotherapy being touted as a treatment for this disease is as effective as cutting down forests in expectation of the wind to stop. It won’t. The studies that say they have are chock-full of issues, and the patients speak for themselves, if we’ll listen. Typically ruling out one theory means pursuit of another. It also means letting go, if you’re really seeking answers and aren’t attached to outcome. 

This BPS model has dominated the whole scene: the narrative helped shape the media coverage (and vice versa) that CBT (cognitive behavioral therapy) and GET (Graduated Exercise Therapy) were helpful treatments for those with MECFS.  It informed policies and advocated for “treatments” that don’t work, for a disease causing immeasurable harm to millions of people. And yet, they can’t let it go, convinced somehow, if we trim the branches like this or hack off the top like that, eventually this will work! If we continue to pursue this idea some perfect way, eliminating the tree will eradicate this wind. It won’t. They have worked this idea to death.

Specialists of this specific wind will tell you, will show you, that’s not going to work, because the wind is due to underlying geological processes. The people, the TREES, having their lives destroyed will tell you the same thing, but their voices won’t be heard as loud or clearly. Doubt has muffled their voices for decades. As such, there has been a lot of loss.

Like Peter Paul and Mary Sang:

The aaaanswer my friend,
Is blowin’ in the wind,
So pleeeease stop
Decapitating treeeeees

Very slowly, this historically dominant narrative is finally starting to change, despite opposition, which has doubled down on their bet that CBT and GET are actual treatments and helpful for sufferers. They will disagree with what I’ve written here, but that is nothing new. The BPS model, (biopsychosocial model) has reigned long past what it’s warranted, but in an historical absence of biomedical research and answers, it’s been easy for that to happen. We know better now, we know so much more, thus it’s far time we let that model go concerning MECFS. And for the sake of sufferers everywhere, we definitely don’t tout it as a treatment, when we know that this “treatment” can and has made patients worse. For many the damage has been irreparable. 

We are getting closer and closer to real answers, thanks in particular to organizations like the Open Medicine Foundation and the handful of specialists who’ve dived deep into the heart of this disease. But this organization runs off the charity of the public. I’ve said it time and again, but real scientists and doctors working as hard as they are, shouldn’t have to protest on the weekend so they can get their work done throughout the week. This is the whole reason for institutes like the NIH, which the public already pays for. 

The paradigm is shifting and I’m grateful for that. But charity alone is not going to pay for what is needed in the way of biomedical science. When you continue to pursue a model that’s collapsing in on itself, that’s half of how you’re harming sick people—by taking away already scarce resources that could be allocated toward research that has an actual chance of providing answers, and putting them toward a method that’s already yielded results. Those results aren’t the answer here, but there is one. There many be many. Answers lead to treatments, and hopefully, eventually, one day a cure. We need resources to go there.

I believe that will happen. I can only hope in the meantime that we hear and validate patient voices, recognize more humbly what hasn’t worked, and that we use past research to lead us in a new direction of what will.

Health, Happiness, Save the Trees 

 

**Please add your voice to the petition if you haven’t, especially if you’re an MECFS patient. Your story is important. We’re very close to 49,000 signatures …Good stuff yall, good stuff. THANK YOU.

https://www.change.org/p/increase-research-funding-for-me-cfs

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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