People with intractable pain are more likely to need LTOT. Things like CBT are NOT going to work and haven't worked for these people and most of them have already tried everything else. Why are we spending billions on research without acknowledging this monumental difference? 🧵
People don't understand that pain is a nuanced topic. There are people who haven't developed chronic pain yet, those with chronic pain at the beginning or middle of their journey, and then there are intractable pain patients. Why isn't research catching onto this?
There should be very structured research strategies taking these differences into account. Maybe @NIH and @PCORI can explain why these differences are not being acknowledged. We need research on LTOT too and what is comparative effectiveness research without a comparison?
I realize that PCORI does most of the ACA-mandated CER, but the NIH is doing pain research and conflating it with addiction at every turn under the HEAL initiative, and often conducting embedded pragmatic clinical trials (ePCTs) on people without their knowledge or consent.
Why did the Federal Pain Research Strategy leave out these nuances? Is research going to continue ad infinitum without so much as a safety net for those force tapered and/or forced into "addiction" medicine because of the CDC Guideline, despite the fact we never drove the crisis?
Because it seems like either shoddy reactionism or simply intentional at this point, and neither breeds a lot of faith in what's being undertaken with our tax $ Where is our return on investment, or are we just expected to suffer while science endlessly searches for alternatives?
There are millennia of empiricism saying opioids work for pain. ALL pain, not just cancer pain, as if there's a difference. In fact, those who seek to make a distinction, and/or conflate pain with "addiction" appear to be creating economic health at the expense of the population.
Maybe you haven't noticed, but all these policies proliferating in the wake of the OD crisis have only made things WORSE. 100k people died of OD/poisoning. We have no idea how many died from forced tapering. How many more will it take for sane policy & appropriate research aims?
Intractable pain patients need a solution NOW. Nearly half of the chronic pain patients that have followed me over the years are either dead or simply disappeared without a trace. Where are @StefanKertesz's and @AllysonVarley's millions for research funding to look at #Suicide?
How long are we expected to wait for something to be DONE about the incorrect application of the CDC GL that went dangerously outside of its stated purpose/targeted audience, i.e., primary care? Not to mention the fact that NO ONE conducted outcomes tracking? The time is right:

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More from @process_x

5 Dec
NIH is allocating $270M additional funding for pain & opioid research. The researchers don't pocket this money. While I don't agree with research at the bedside without the knowledge/consent of patients & then using it to further restrict access, let's not spread misinformation.
Bad things are happening, but let's keep things in perspective. Researchers do not pocket millions in grants. The money goes toward studies which then influence the practice of medicine. This is the detail we should be focusing on. Here is an image detailing the process: Image
The policy driving the response to the OD crisis as it relates to HC is the CDC's 2016 guideline, however, federal research is certainly going to change the way medicine is practiced. That is the point of embedded pragmatic clinical trials & comparative effectiveness research.
Read 12 tweets
23 Nov
In case you weren't aware that the purpose of the electronic health record (EHR) is to leverage patient data for research, check out what the NAM has to say about the learning health model in “Digital Infrastructure for the Learning Health System."🧵

nap.edu/catalog/12912/…
"The ability to draw broadly from anywhere across the globe to provide relevant insights for health and healthcare improvement is a long-term goal for the learning health system."
"Meanwhile, the ability to learn from the experiences of other countries and to apply health information technology (HIT) for biosurveillance can actively facilitate progress toward this and other goals."

Note: It's unclear what these "other goals" are.
Read 11 tweets
15 Nov
On this day 8 years ago, my father died. By the end of his life, he was crippled and homeless, all because those who were supposed to help him wouldn't. When he asked his doctor to treat his pain, he told him "man up, I'm not prescribing you anything." 5 years later he was dead.
He started using a legal drug to control his pain, alcohol. His health quickly declined even further. When his time came, he had to drink just to stave off death. He took Benadryl for an allergy attack and it interacted with the alcohol in his system.
He fell asleep at the wheel of his car, while he was driving, and flipped it off a steep road. He died on impact. I still wonder why his doctor felt it was more just for him to kill himself rather than treat his pain so he could continue being a productive member of society.
Read 6 tweets
15 Nov
What happened to the world? I had to leave the house today because I have a Western Union money order made out to me that my bank won't take via ATM anymore. Leaving my house is incredibly difficult after covid made my dysautonomia intractable & my pain levels aren't much better.
First, I went to @HEB because the website and a customer service rep told us on the phone that they could cash it. I get there in my wheelchair, after quite a bit of effort and discomfort I might add, only to be told they can only cash a Western Union money order FROM HEB. 🙄
I've never heard of such a thing but still, I call Walmart, they say they can cash it. I think to myself, maybe @Walmart will have more sane policies. I get there, get back in the wheelchair, nearly have an attack doing it, & get inside only to be told the same thing HEB told me.
Read 8 tweets
23 Sep
Just got a chance to look more at this which is also from Appriss:

Data Driven Justice Incarceration Report - Identifying Super Utilizers with Incarceration and Prescription Monitoring Data

@maiasz

appriss.com/safety/wp-cont…
If they take this down and anyone wants a copy, let me know. It's already in my repository.
Target them for what, exactly?
Read 11 tweets
22 Sep
Welcome to the algocracy. The social credit system in the West is anything but "soft" and our healthcare system has a big role to play.

#Algocrats

thehill.com/opinion/financ…
"A parallel system is developing in the United States, in part as the result of Silicon Valley and technology-industry user policies, and in part by surveillance of social media activity by private companies."

fastcompany.com/90394048/uh-oh…
"...the challenge posed by China goes beyond the question of who will maintain dominance in the data industry; it asks whether the United States will also choose to test the maximum power of data technology to control and rationalize society."

jpia.princeton.edu/news/social-cr…
Read 4 tweets

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