Category: science

Refocus on what works: In memoriam

Isy / / critical thinking, legislation, loved ones, meds/drugs, perspective, politics, science, what works

Debbie died yesterday. She was a never-failing source of encouragement and intelligent support on one of my key online CRPS support groups.

She died on the table, while undergoing a medical procedure. I don’t know exactly what it was, and given my respect for patient confidentiality, it’s none of my business.

She’s the first person to die of my disease, to whom I felt personally attached. Needless to say, it’s sobering as hell.

I’ve written about the need to attribute deaths from this disease correctly. I’m preparing my own final papers. These thoughts are nothing new.

But today, they are biting deep.

I’ve recently become highly politicized over rights abuses and intolerable corporate stature in my country. I have privately — and quietly — become convinced that the US healthcare system is so completely predatory, so opposed to its own mandate, that it will never offer healing for anyone in my position.

Debbie’s death has broken through my professional anxiety about appearing detached and scientifically sound. I have, at long last, become politicized about the most important subject in my life, after 25 years of personal and professional involvement up to my back teeth.

I have minimized my discussion here of what actually works. That dishonest omission has done us all a great disservice. I’m going to discuss what works, whether or not it’s FDA approved, pharmaceutically profitable, or adequately studied.

Medical studies are a shining example of the fact that we inspect what we expect, not necessarily what we need. The fact that studies have not been done on most modalities, or not rigorously done in double-blind experiments, doesn’t mean the modalities don’t work.

It means the studies need to be done. Period.

Where I understand the mechanisms of action, I will explain them. Where studies don’t exist, I’ll detail what should probably be explored.

But I have had enough of silence. I will not die as Debbie did. I will not die on the table. I certainly will not die saturated with soul-destroying pharmaceutical-grade poisons, as so many of us do.

I will find a better way. I will find a way that works. I’ll do my best to persuade others to study the modalities involved, and to fund the studies. My legislators will learn to recognize my name on sight, because their slavish debt to the pharmaceutical industry is absolutely intolerable and it’s up to me, and others like me, to convince them of that.

I wish Debbie a painless and peaceful rest. I hope her extraordinary husband finds enough strength and comfort to manage life without her.

For myself, I want the intelligence, resources and strength to find a solid cure, make it happen, and spread the word.

No more silence. It’s too much like consent or, worse, collusion.

I do not consent to the deaths of my friends.

With my eyes now open, I’ll no longer collude.

Let’s find a real way out.

New sib

Isy / / science, what works

Check out the sister site:

Bio Wizardry: Cauterizing the Bleeding Edge

I’ve already had one comment that told me I’m doing exactly what I intended — “I’m always searching for info., but rarely understand what I’m reading. So thanks!”

I turn handsprings inside.

Bio geeks and patients, slide on over. Feel free to tell me what you want to know, or what articles you need to understand. If I can bear it, and if I can do it, I’d be delighted.

Query: where have all the good studies gone?

Isy / / brainiac, realpolitik, science, studies

I wonder why so much money gets thrown at the same basic studies over and over again. My personal hair-puller is the ones that call for subjects “with chronic CRPS, with only one affected limb.” They must be testing the same dozen people over and over and over again. Wait, they can’t, because if the subjects have chronic CRPS with only one limb affected, they’re either about to get better or much worse.

It’s all very well to keep re-proving a treatment until a level of acceptance is reached, but there are more effective and cheaper avenues — and much richer ones — that are passed by, in favor of flogging a handful of horses who are, at best, unconscious.

It has been too long since significant effort has gone into much more basic research: by and large, we’re still working with the scientific equivalent of the horse collar, when it comes to pain management — not the Ferrari. In fact, it’s unclear to me why we’re still fixated on management, when we need to think in terms of cure. Most chronic pain is needless.

If we knew more about the relevant neurochemistry and cellular metabolism, we’d be in a MUCH better position to figure out when NSAIDS, lido, shock, acupuncture, spinal cord stim, or ketamine comas will work, and when they’ll just be another doorway into hell.

Can you imagine how much money — and misery, and time — it would save to have a short list of things to try, based not on each doctor’s semi-religious leanings or equipment contracts, but based on each body’s signal framework and chemical signature?

Dreaming is free. Studies require funding. Follow the money, and unfortunately the reasons behind all this brutal silliness become clear.

File-sharing ~= sex, fecal transplants, and bacterial cognition

Isy / / brainiac, humor, nature, science, studies

This is the richest, most fascinating article I’ve read about life, the biosphere and everything:

http://www.miller-mccune.com/science-environment/bacteria-r-us-23628/

Now that’s a writer with ADD, putting all that into one contiguous piece — but also she’s got one hell of a gift, to make it so coherent and approachable. I want to be like Valerie when I grow up!

I’m completely blown away. I’m going to go for a bus ride so I can explain to the air how thrilling bacteria are. After all, I have to take the bus ride anyway, so I might as well scare people off.

I am in paroxysms of bio-geek delight!

Scientific method & infant studies

Isy / / critical thinking, opinion, science, sheeple, studies

Further thoughts on this article which revealed, to every parent’s astonishment I’m sure, that babies remember what upsets them and learn to hope for less in the future:
http://www.physorg.com/news201964561.html
My first, suppressed response was a huge internal “WTHF??? Who’d do
that deliberately??”
But I was a nurse for years — I know what people will do deliberately and I won’t go into it here, especially since I just had a tasty breakfast.
My second thought was the one reflecting my training, which tells me that if it isn’t repeated in a number of controlled scientific experiments, it’s not accepted medical knowledge (document, document, document!), and if it’s not accepted scientifically, it won’t be accepted as good parenting practice.
grrrrrrrrrrrrrrrrrrrr… But I digress.
On the one hand, I’m glad that a few OBs might suggest that parents hang onto their infants instead of handling them like awkward, smelly little responsibilities to be managed with as little face-time as possible.
On the other, I find it profoundly, horribly wrong to tell young parents to walk away from their screaming baby and stay there while we stab or slash the kid to get a few blood samples, and then come back again later to do it all again.
Because heaven knows you can’t just watch the painful reality of life unfold naturally. That would require the assumption, antithetical to scientific method’s assumptions, that observation and empathy in a real-world setting (where sometimes kids get put down for real reasons) is a valid basis for drawing conclusions.
I could go on about psychogenic shock, neurological development, early bonding, the isolationist shift in child-rearing advice over 30 years, the current puzzlement among psychologists about the staggering proportion of young adults who are incapable of empathy, the weirdness of the fact that most of the world is toilet-trained by ~2 but here we’re rarely trained by 4… And so on.
But that could take awhile and my iPhone is starting to make my fingertips sting.

Scientific method: a fragile prop

Isy / / critical thinking, opinion, science

There’s an unalterable gap between scientific method and basic decency. This is one of several profound deficiencies in the former, like its rigidly Newtonian frame of reference, the circular logic of many fundamental assumptions, and the _unacknowledged_ reflexive trope, “If we don’t understand it, it isn’t real; if we haven’t tested for it, it doesn’t exist.”
How can scientific rigor possibly be equated with intellectual rigor,
when it cherishes this absence of basic intellectual integrity?
The combination of profound & pervasive logical fallacies, combined with a very weak attachment to the human context in which it’ll ultimately be used, make scientific method far too limited to base most of biomedical research on. It would be excellent as one of several methods, since what it does accomplish, it does very well.
For better and worse, though, it’s the “gold standard” of biomedical research. Astonishing. And very scary. It explains an awful lot.
… In related news, the US currency went off the gold standard under Nixon.