I invite y’all to check out this campaign, and to sign and share it if it feels right to you.
This is a prime example of using the web as a platform for change and for being heard on a large scale. This is how the internet will contribute to the shift around this movement in so many ways. Here is where we demand accountability, where we can distinguish fact from fiction, and how we can begin to improve the poor understanding of CFS/ME with information in place of subjectivity. There is a curious amount of opinion surrounding this disease, and a major lack of knowledge. Balancing this scale is crucial if we’re to achieve the kind of large-scale transformation that were seeking. There truly has never been a more opportune time to help contribute to this kind of cause–the digital age puts the power right at our fingertips, and it’s up to us to use it.
Sometimes the universe helps align things, and I felt that way as I read this online campaign regarding The Pace Trials from 2006. I mentioned the study briefly in my letter, because this $5 million dollar study led by mental health professionals in Great Britain had a huge impact on the CFS world–unfortunately it was a negative one. The trial coordinators revealed its findings to an eager world awaiting answers, and it appeared they’d found some. Trial professionals claimed that Graded Exercise Therapy and Cognitive Behavioral Therapy had profound results on people with CFS, in fact it led to recoveries in a good portion of trial participants! The news spread quickly, and it influenced not only public opinion of the disease, but public policy regarding it. Benefits were slashed for disability after the trial when it became clear that these “sick” people didn’t have a disease so much as they were simply de-conditioned, and either simultaneously, or as a result, were also depressed. They didn’t need rest, they needed to push through and sweat it out. Either way, it worked! Great. Except that, it didn’t work.
After third parties began to break down the details of the trial after some initial numbers didn’t add up, they found huge errors in consistency, methodology, patient feedback forms, and in sticking to scientific protocol in general. The problem is that by the time all these issues with the study came to light, that false message had already been conveyed, the damage done. How does that phrase go? Lies will travel halfway around the world while the truth is still lacing up it shoes…
There seemed to be no official consequence for what turned out to be either massive negligence or outright wrongdoing on behalf of the study’s organisers. Worse is that the Trials are still cited as scientific proof for the idea that therapy and exercise are helpful to people with CFS, even though specialists in the field and patients attest that the opposite is true: exertion can be severely damaging to a person with this disease. It’s the modern equivalent of advising diabetics to simply eat more sugar, just a little bit at a time! Your body will slowly learn to tolerate it! The point is, this trial either directly or indirectily halted progress for CFS/ME by helping to solidify a theory that never turned out to be true. It continues to inform decision makers and is still cited as legitimate science even though it fell far short of that. The irresponsibility of the trial and its coordinators set an already struggling and sick community back, and I think we have to be proactive about preventing any further damage that could result from misinformation like this. It’s a timely matter that is up to us–the internet doesn’t favor fact over fallacy. It’s simply a medium moving all data at an insane speed; the burden is ours to discern between what is true and what falls short. We’ve got some catching up to do, but at least now there’s a way we can.
This is personal for me of course, but it’s also about keeping public officials in line and holding them accountable for the decisions they make. I like that we have the ability to hold serious matters like this under the light, that we are able to help correct wrongdoings and achieve transparency where we didn’t always have the power to before. This petition asks to retract at least parts of this “study” from being included as legitimate research, which seems fair. Im hoping it will help leave the myths around this disease in the past and move us forward with the kind of ground-breaking science and studies needed to finally find a cure, not secure a stagnant status quo. You can read more about the trial through this petition or check out some other websites at the bottom of the page.
Congratulations, you’ve made it to 41. If you’re still living in your parents pool house, don’t feel bad. We all move at our own pace. I hope this letter finds you well. You know, I normally hate that line, mostly because it’s hardly ever genuine except as an ice-breaking device used in emails just before asking for something, usually money. But I mean it. ‘Well’ is pretty relative term, but you know what I mean–better. Better than today. It’s November 5th, 2015.
For record-keeping, I’ll set the scene. I’m writing from bed, the computer in my lap and Monty sleeping on the edge in his spot. I am achy, heavy-bodied, and nursing a head-ache that now spans the entirety of my face. It’s strangely resistant to pain medicine so I use frozen peas to numb it. I feel the force of gravity pushing against every move I try to make. Standing up makes me dizzy and faint, so I’ll spend most the day sitting or supine. (POTS) My brain is fuzzy and clumsy. My thoughts come fast and then stutter and mix up on their way out. Writing is better than speaking. It’s more patient. My heart mimics hummingbirds and butterflies. It makes this audible “clicking” sound whenever I lay down, like my own cardiac stopwatch in which to keep time! My blood pressure spikes and drops, making simple things hard, like showers and teeth-brushing. (Dysautonomia) So I stay horizontal–a term my specialist uses and advises on days like today. But the Interstitial Cystitis makes this part harder. I peed 12 times last night! A new record. But who’s counting? This is how crash days go. Another part of the disease that goes mostly unseen.
But let me interject. The point here is not to belabor on about life with illness. This is simply the physical state of things, and the more important point I am making is that I am OK. I’m not living a life that looks anything like the one I planned for, (haha, plans) but I’ve found meaning here too. I’ve forgiven what my life was supposed to be, and grown into the one I have. It’s smaller-sized than the one I dreamed of, and it bewilders more people than it impresses, but I’ve actually learned to like it here. Every day despite health and money and a recently sad surplus of dead animals in the pool, I crawl into my bed at night and it hits me that I’m OK. A small flick on the side of my head.
Is it a contradiction to say you’re fine but also expect change on a large scale? I hope not. But it’s partly the reason I’m writing now. I detect a shift underway. I hear a slight buzzing sound behind the drone of everyday life, and it hints at considerable change to come. I hope in time this letter will be a relic from an era long gone. I hope it will be a nearly humorous account of the way things used to be once, but that it won’t sound all too familiar. I hope that physically I’ll just barely be able to recall it, like the name of a childhood teacher on the tip of your tongue.That’s my hope, but who can know? Just in writing this I can feel my future self alive somewhere; that she exists on some unknowable plane, and that when she reads this letter it will make her happy.
It’s my belief that if I’m not cured by the time I read this, that my mom will have shot me like I made her promise to. Only joking calm down. If I’m not cured, I expect at least to be a much higher-functioning version of my present self. I should be able to work at least a few days a week, to attend (and dance at) a wedding, or to go on a bike-ride and not crumble for days after. I don’t see this as wishful thinking or as the result of divine intervention. I see FDA-approved, effective treatment optionsas an only natural, foreseeable byproduct of the serious research to come by governing agencies like the NIH and the CDC. As I write this, there are zero approved treatments. My 25 pills a day are mostly bandaids on a broken knee.
Up until now, the world hasn’t quite known what to do with someone like me, like us; chronically sick people who don’t get better and don’t die. And I understand their unease. This is all relatively new, and we just haven’t developed the etiquette for it yet. But a bigger issue exists in this realm, and it’s having a disease called Chronic Fatigue Syndrome, a name so comparatively small and demeaning, I don’t even like to say it out loud. It’s hard to keep my own eyes from rolling. Instead I call it Shit Turd Disease, which feels no less valid or serious, and has the added bonus of a cackle at the end. Out in the world, I don’t really feel like a person who has a disease. I feel like someone with a strange secret to keep–Something to talk about in hushed, apologetic tones. Or something better not to talk about at all. Explaining and defending it takes an energy you just don’t have. So you stay quiet, but there’s a loneliness in that choice.
And there are consequences to it. For decades, the voices of the sick have been drowned out by the loud, proud professionals with strong opinions about our disease. Their ‘efforts’ are continually led by the notion that we can be cured with exercise and positive psychology. This was what the influential $8 million dollar Pace Trials set out and claimed to prove. Exciting! But upon 3rd party inspection, methodological flaws were found throughout the process, basic but crucial scientific protocol was neglected, and there were blatant conflicts of interest: Trial scientists had longstanding financial ties with the disability insurance companies who’d rather not foot the bill for those with Shit Turd Disease. And yet these trials still helped solidify the narrative that these “non-treatments” were legitimate. For more than thirty years, this idea has fueled study after study, it has shaped public opinion and policy, but it has not actually made the sick people better.
But here is where I detect the buzzing. Our attempts to improve public awareness and patient advocacy are hindered by the obvious: We’re a sick, slow-moving crew, and many of us are house or even bed bound. Fighting to be heard requires a vigor that’s diminished when you’re sick. I imagine a CFS Race for the Cure! would be more like a Saturday Night Live skit, with an embarrassing amount of joggers passing out on top of one another thirty seconds after the gun went off, half of them being hauled off in ambulances. But we’re living in the age of technology now, without the prior limits that hindered communication and networking. Now our collective voices can be heard without us leaving the house, and that matters here. The digital age provides for a new accountability and transparency where there was none before. Maybe now that professionals know their work will be seen by many sets of eyes, they’ll be less inclined to make those silly mistakes like those of the Pace trials that deeply effected the lives of millions of people. All of this helps to balance out the power. This is how we change the direction of the fruitless path we’ve been on. We have always had the right, but now we have a platform–thank you internet– where we can be seen and heard, and we have to use it.
Of course, people will stick to their guns (even in the face of gun laws they’ll do it!) And that’s OK. This isn’t actually about proving anyone wrong. No, that is the egos fight and it doesn’t belong here. This is about knowing that silence never yielded progress, and that to enable the truth we have to listen as much as we talk. It’s about ending an era that has ignored the complexity and vulnerability of what is true for the convenience and righteous facade that comes from salaried opinion. At a basic level, this is a humanitarian cause. What does it say about us that we treat the sick this way? What we do to each other we do to ourselves. So let’s do better.
Curing and treating this disease has never been an issue of capability, intelligence, resources or technology; It’s simply a matter of the right people having the committed willingness to try. If we begin there, it will be enough. But that means really beginning. It means treating this disease like an actual disease, and not some commonplace complaint or nagging ‘woman’s issue’ to be fixed with yoga. It means at least 10 times the amount of annual federal funding toward research. It means leaving the politics and scandal and doubt in the past, and surrendering the ideas that have proved ineffective. Let’s begin with purity of intent–to understand and cure it so people can get their lives back. Then I can stop writing these weird letters to my future self.
There are a lot of different ways that the next decade might play out. I could very well be cured, married with babies, living the kind of fast-paced, busy life I watch other people live. I always imagined I’d have a daughter and name her Catherine after my mom. Of course I might still be sick, an unpaid blogger still living in my parents pool house. I’ve already reconciled both possibilities. I’ll be OK. But then again, I’m not alone. This is much bigger than me.
This is millions of people at the mercy of a disease with a bad reputation and a worse name. And I’ve realized it’s useless to keep crossing my fingers about necessary change. This letter isn’t written out of hope, but as a nod to the future that I feel called to make better, starting now. It’s a reminder that change is possible and it always starts small. It’s my own refusal to stay quiet, especially on behalf of the many sick people far worse off than me, too sick to speak up. When I read this again, it shouldn’t matter whether I’m sick or cured. If I’ve done the work, I’ll be reading it from a better world; where sickness is not a secret, where we gravitate toward the truth, and where the silenced voices are finally heard. If that’s the world I’m living in, this will be the reminder that we did it, and that we’re OK. A small flick to the side of the head.