Scott Reuben and the poison in medicine’s well

In a stunning piece of timing after yesterday’s epiphany, this crossed my wire today:

“A Medical Madoff: Anesthesiologist Faked Data in 21 Studies” – Scientific American
http://www.scientificamerican.com/article.cfm?id=a-medical-madoff-anesthestesiologist-faked-data

“Beginning in 2000, Reuben, in his now-discredited research, attempted to convince orthopedic surgeons to shift from the first generation of nonsteroidal anti-inflammatory drugs (NSAIDs) to the newer, proprietary COX2 inhibitors, such as Vioxx, Celebrex, and Pfizer’s Bextra (valdecoxib). He claimed that using such drugs in combination with the Pfizer anticonvulsant Neurontin (gabapentin), and later Lyrica (pregabalin), prior to and during surgery could be effective in decreasing postoperative pain and reduce the use of addictive painkillers, such as morphine, during recovery. A 2007 editorial in Anesthesia & Analgesia stated that Reuben had been at the “forefront of redesigning pain management protocols” through his “carefully planned” and “meticulously documented” studies.”

More from the New York Times:
“Doctor’s Pain Studies Were Fabricated, Hospital Says”
http://www.nytimes.com/2009/03/11/health/research/11pain.html

And the Injury Board:
“The Fake Clinical Trials of Dr. Scott Reuben” http://cherryhill.injuryboard.com/fda-and-prescription-drugs/the-fake-clinical-trials-of-dr-scott-reuben.aspx?googleid=259290

It’s hard to convey the total horror of the event described here. This physician scientist, who ran the pain clinic at one of my old hospitals, published research that became the cornerstone of pain treatment in the US and abroad. After 13 years of successful, peer-review-published, desperately important work, he recently admitted the following:

• Not one single patient was ever enrolled in key studies.
• There was absolutely no basis for the numbers he cited; he invented them.
• He was paid a great deal of money to come up with certain results, and that is exactly what he did.

The most influential part of his career was a fraud.

The countless studies founded on his widely-publicized fictions are therefore meaningless, under the rules of scientific evidence itself.

The degree to which we depend on medical science to save us when we really need it — our helplessness at our times of greatest need — require us to have some faith in the processes that deliver our care. This isn’t just another massive fraud, it’s a devastating blow to the cornerstone of healing in the modern age. How can educated patients ever continue to believe that our doctors have anything of value to offer us? How can honest physicians bear to let this situation exist?

He could not have chosen a worse field to work in. In medicine, sooner or later, every field has to rely on pain medicine, and he has fouled the well from which the widest number of patients must drink. Scientific American got it wrong: Madoff was a piker, next to this.

The science of pain control and pain management has depended heavily on garbage cooked by a liar, served by intellectual catamites and eaten by the brainwashed. From there, it was inserted into me and mine, who were assured that this was the best that medical science had to offer.

Too bad there was no actual medical science involved.

…I apologize for the strong language. Can you think of more precise and telling terms to use instead? I’d be happy to change them, if anyone can come up with something better.

There are administrative questions such as, whatever happened to peer-review? Who the hell was looking at his notebooks and other physical evidence of scientific work? Why did it take 13 years for a “routine check” at Baystate to break his cover? What on earth were the most important science editors in the world thinking? How many of them are still employed — and why?

Those aren’t trivial, but they are not what looms largest in my mind. I think of Debbie, and me these past few years, and other friends I can’t name whose lives have been hopelessly distorted and sometimes horribly lost … because modern pain research has been built on one psychopath’s lies, which were funded and supported by a vast network of fellow liars, colluders, and the willfully blind.

It has sometimes occurred to me that the wrong people get sick.

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Pain Manifesto

This came out of cold chronic CRPS type 1, a debilitating condition of intractable chronic pain, nervous system disruption, and multi-system dysregulation — destroying the body’s ability to manage heat/cold, blood sugar, immune defense, circulation, sensation, bone density, movement, vision, digestion, heart function, and ultimately survival.

“Standard” treatments don’t work well for me; moreover, they involve invasive procedures too brutal to tolerate and medications I’m either outright allergic to, or that impair me so profoundly I can no longer function. At all.

So I took myself off my meds, thought things over, and came to the following conclusions.

MY CHRONIC PAIN MANIFESTO

Yes, it hurts.
It’s going to anyway.

So should I hoard my days
And fast from life?
Comfort myself with poisons,
Blister-packed and FDA approved?

Some think it would be best all ’round.
I’d cure them if I could (heh!)
But I’m too tired for
Yet another pointless struggle.

The sunlight pours through trees like prosecco
And reminds me what it means to live:

Voices warm with love, the
Mouth-smack of good food,
The hug of hills and the
Rough snuggles of the sea.

Hoard my days? I’ll spend each one
Like it’s stuffed with jewels
Pouring through my hands like a miser’s dream.

Feast on this:
The cost of life is much the same.
The difference lies in how you spend it.

How is this relevant to medical science? For one thing, it shows just how badly off base it is in vivo. Like any manifesto, it makes an explicit declaration: fundamental attitudes must change.

Policy determines what will be profitable, and profit opportunities determine what science gets funded. There is no profit in fully-functioning people, but there’s plenty in people who are too sick to function but not sick enough to die … for awhile.

Policy could allow my insurance to cover the things that do work (massage, reiki, homeopathy, yoga), especially given the detailed and vivid documentation I’ve provided of just how well they work. Nobody will fund science studies on these in any volume, because it is so much more profitable to drug people into silence.

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Assessing live myelination — and dead CRPS!

Fortunately, I’m bright enough to evaluate this extraordinary new method:

http://www.sciencedaily.com/releases/2011/09/110913103211.htm#.TnDL-iVvIQs.mailto

There are vague mentions in the literature of myelination in CRPS, but researchers are so busy trying to figure out how to pill CRPS — a highly pillable disease — that such mechanistic issues get surprisingly little play.

Myelin is the protective sheath of fat that keeps your neurons safe and warm, so they can do their work. Without myelin, your nerves can’t fire properly — or else they can’t stop firing. They need the myelin sheath. Little kids need to take in a certain amount of cholesterol so their growing bodies can build good myelination. Demyelination, that is, the loss of that sheath, is most famously known for its role in Lou Gherig’s disease.

I’ve long suspected that demyelination is both an important sign of disease progress and a powerful contributing factor to further degeneration of the peripheral, if not the central, nervous system in CRPS. However, there’s not much in the literature, probably because it’s a useless treatment marker in someone who’s beyond treatment.

This brings us to the particularly delightful issue of finding corpses to study, since until now we could only check myelination after autopsy, and those who donate their bodies to science are filed under what took their lives.

People with CRPS develop heart disease, cardiovascular disease, bleeding disorders, organ failure, vision impairment, and staggering depression as a direct consequence of CRPS. However, when they drop dead, get struck by a bus they couldn’t see, or take their own lives, we don’t say “They died of CRPS.” We say, “They died of heart disease, organ failure etc., traffic accident, or suicide” (– if we’re feeling kindly, “or depression.”)

Thus, there’s no way to identify the actual mortality rate of CRPS, although there unquestionably is one.

Diabetes, cancer, and AIDS get more dignity than this. I’d like to see our mortality rate properly attributed, not swept under the enormous rug of opportunistic conditions. This would contribute hugely to better medicine.

Doctors hate seeing patients hurt, but after awhile they can turn away from that, in order to drag themselves back to the office; they hate to see them die on their watch, and it makes them apply upward pressure on the reimbursement and legislative aspects of the care system.

There’s nothing like a mortality rate among those in their “productive years” to make legislators sit up and take notice.

I started nursing within a decade of the first AIDS diagnosis; my first job was on an AIDS unit. I’ve seen it work.

Let’s get our deaths properly attributed. It’s one last gift we can give our compatriots as we head out the door. I’m going to put it in my will.

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Hemingway: How courage and depression go together

This article is well-intended, but egregiously judgmental and woefully ignorant:

http://www.npr.org/2011/07/02/137540700/after-50-years-remembering-hemingways-farewell

If it weren’t for the inane babble puzzling over why Hemingway lived so intensely, this line would be the Winner of The Most Fatuous Statement award: 
“…in January 1961 he told his wife, Mary, that he could no longer write a single good sentence. And Hemingway would only settle for great ones.”
It wasn’t a question of settling for less than great, it was a question of how important it is to fulfill your purpose and dig some meaning out of life, even amid the unbearable. That purpose and meaning was taken from him, under the mistaken guise of treatment. 
Hemingway got electroshock therapy for his depression; a common side effect is to knock out your language abilities and cognition, sometimes for months and sometimes forever. The one thing that made his life endurable — writing like himself — was taken from him. 
Depressed people have more courage and determination than their non-depressed cohorts. Studies are finally being funded that verify this (which I’ll dig up later. Feel free to nudge me with a comment.) 
Think about that next time you curl your lip over suicide. It’s not about courage. It’s about unbearable pain and a degree of mental crippling that puts a valid life out of reach. 

Waiting and working at it until things improve is a reasonable thing to do: Hemingway waited and worked at it for  40 years, though with so little real hope for treatment. Talk about courage! It’s unthinkable how much courage he brought to bear on his life. His intensity and wild behavior were directly related to making his life bearable — and his work more compelling. Check his quoted remarks on that subject. What’s between the lines is breathtaking. 


The article’s remark about suicidal lineage is true, but poorly understood. A suicide in the family has the powerful effect of making suicide less unthinkable. There is often a genetic tweak associated with it, but that’s not all there is. The thing to know now is, we are not our predecessors; we can do more. Far more. 
Hemingway died before we developed SSRIs, SNRIs, and a tremendously improved understanding of neurochemistry, behavior, nutrition and psychodynamics. We have more options now. Lots more. Waiting and working at it is a real success path now. 
Be good to your depressed friends. You probably have no idea what they’re capable of, when they can be well again. Help them persist. 
It’s the most important thing to do: persist. A valid and bearable life is a reasonable thing to hold out for. Only death bars the door to healing. Things will change. 
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Everything has side-effects

This replaces “The Dominance of Duh,” a diatribe written in a haze of detox from overmedication. This post should be more useful.

“First, do no further harm.”

It’s the most important treatment guideline there is.

Why is that so relevant? Because Nature doesn’t give the body a free pass, just because the poison comes with a prescription. Physics and chemistry are not impressed by education; they do exactly what they are supposed to do, regardless of who’s watching them… Or failing to.

Therefore, prescriptions don’t alter the nature of what’s being prescribed. Every assault on the body — however therapeutic it’s intended to be — triggers a response involving the nerves, inflammation, and immune system. Medications affect the liver and kidneys, and probably the intestinal system as well.

That’s a lot to affect.

How do you deal with this in the real world, as a real person with real conditions requiring real medication?

Well, good friends help. So does communication. Here’s why:

Your doctor/practitioner is supposed to do a risk-benefit analysis of each drug prescribed. Some take this more seriously than others, some weigh the risks differently, and each practitioner has a unique idea of what’s really important in the first place. It’s good to be aware of your practitioner’s priorities and beliefs, so that their decisions make more sense to you, and you can be better aware of what to ask about or follow up on.

Communication: Get the lowdown on the treatment from your doctor, your pharmacist, your nurse friends. It can be confusing at first since everyone has their own ideas, but the common themes (and common concerns) will emerge, giving you something to look into more closely. Also, they can tell you what terms to use when you go to look it up online.

Good friends: One reason we have friends is so we don’t have to hold everything in our own heads: we can talk things over with them, and then go back for reminders. Another is because they can help us clarify our thinking, and if your meds can make you a bit confused, that’s essential! It’s important to have friends who can tell you when you’re a mess, and maybe it’s time to get your meds re-evaluated.

Need to get your meds re-evaluated? That brings us back to communication, and talking things over with your doctor. It’s a perfectly reasonable thing to ask, so feel free to: medically speaking, it’s good practice to do this periodically. Bring a friend to the appointment, if that would help you discuss it.

Three more things you can do, essential to health: drink plenty of water, eat plenty of produce, and get a bit of fresh air every day. These help your body clear out the excess, keep your natural detox systems working, and provide your body with the building blocks for recovering from the chemicals — either the added chemicals of medication, or the stress chemicals your body releases around treatments and procedures, or both.

Being a patient is a tough job. We have to trust our beings to people who aren’t us, and that entails a certain amount of risk. It’s EXTREMELY easy to blame doctors for screwing up, but when all is said and done, we own our share of responsibility in that relationship.

So talk to your doctor. Talk to your friends. Drink up and eat your greens. Now let’s take a nice walk …

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A job well begun …

I have CRPS-1/RSD/causalgia, and when your condition has more than one name, it’s a bad sign. I was a nurse, I was a tech writer, and I remain fascinated by health and technology.

Some parts of my brain have blown gaskets, but examining the science relating to neurology/immunology/endocrinology — and mulling how it could work in real life — seems to go just fine. It’s appropriate to both my professions that I want to track, document, and share what I learn.

You’re invited to watch and engage in this interesting journey. It’s taking place at an unimaginably rich, burgeoning age of technological development and biological understanding.

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