Michigan Disability Resistance

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Music isn’t so easy to see live anymore. Five years ago, I was diagnosed with an incurable degenerative disease called Ehlers-Danlos syndrome. EDS is a collagen disorder that causes a slew of symptoms and comorbidities, including random joint dislocation.

Concerts are expensive when you’re chronically ill and constantly paying medical bills, but beyond this, many music venues aren’t wheelchair accessible ― even if they claim to be compliant with the Americans with Disabilities Act. The ADA is a civil rights law that was passed in 1990. It prohibits discrimination based on disability and provides mandatory guidelines that businesses must follow in order to be physically accessible to disabled staff and patrons.

But I am not equipment. I am a person. Still, though our courts decided years ago that separate is not equal for anyone else, I don’t get to enter the venue with everyone else. I am treated the same way we treat drum kits and other inanimate objects.

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It’s my understanding that, in chemistry, a precipitant is a reagent that produces a reaction of which it is not a part. It is analogous to one form of institutional action in relationship to a local neighborhood. 

Most neighborhood-focused institutional actions involve introducing a substantive program that serves the interests of the institutions. Therefore, the people in the neighborhood are not involved in determining what should be done, how it should be done and who should do it. However, these three activities are critical if neighbors are to act as citizens defining and producing the future.

Determining what should be done, how it should be done and who should do it are three critical activities if neighbors are to act as citizens defining and producing the future.  

There is one possibility for institutions to enable citizen action if they can be a precipitant rather than a programmatic intervener. A precipitating action would avoid defining for neighbors what should be done, how it should be done and who should do it. However, it could act to precipitate citizens performing these three actions. 

Two examples of institutional precipitation are: (see post)

This is a PDF of the article....

http://bit.ly/2IMQr24

The Centers for Medicare & Medicaid Services (CMS) published a major revision of federal nursing facility regulations on October 4, 2016, providing new and expanded requirements for nursing facilities that participate in Medicare or Medicaid.1 This was the first major revision since the regulations were issued more than 25 years before. 

This article provides a comprehensive guide to the revised regulations, focusing on care planning and person-centered care; admission, transfer, and discharge procedures; grievance procedures; resident rights, choice, safety, and self-determination; staffing, medications, and quality of care; and protections from abuse, neglect, and exploitation. 

The article also discusses advocacy and enforcement issues raised by the new rules 1 81 Fed. Reg. 68688 (Oct. 4, 2016). and subsequent CMS rulemaking activities under the administration of President Donald Trump, which are likely to result in modification of the rules.

Corruption isn't the only problem with evidence-based medicine. PWD, especially with chronic medical conditions also face issues arising out of the protocols used for creating evidence-based medicine, including the protocols tha are used to approve the use of medications......

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The idea of Evidence Based Medicine (EBM) is great. The reality, though, not so much. Human perception is often flawed, so the premise of EBM is to formally study medical treatments and there have certainly been some successes.

Consider the procedure of angioplasty. Doctors insert a catheter into the blood vessels of the heart and use a balloon like device to open up the artery and restore blood flow. In acute heart attacks studies confirm that this is an effective procedure. In chronic heart disease the COURAGE study and more recently the ORBITA study showed that angioplasty is largely useless. EBM helped distinguish the best use of an invasive procedure.

So, why do prominent physicians call EBM mostly useless? The 2 most prestigious journals of medicine in the world are The Lancet and The New England Journal of Medicine. Richard Horton, editor in chief of The Lancet said this in 2015

“The case against science is straightforward: much of the scientific literature, perhaps half, may simply be untrue”

Dr. Marcia Angell, former editor in chief of NEJM wrote in 2009 that,

“It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor”

This has huge implications. Evidence based medicine is completely worthless if the evidence base is false or corrupted. It’s like building a wooden house knowing the wood is termite infested. What caused this sorry state of affairs? Well, Dr. Relman another former editor in chief of the NEJM said this in 2002

“The medical profession is being bought by the pharmaceutical industry, not only in terms of the practice of medicine, but also in terms of teaching and research. The academic institutions of this country are allowing themselves to be the paid agents of the pharmaceutical industry. I think it’s disgraceful”

The people in charge of the system — the editors of the most important medical journals in the world, gradually learn over a few decades that their life’s work is being slowly and steadily corrupted. Physicians and universities have allowed themselves to be bribed.

The examples in medicine are everywhere. Research is almost always paid for by pharmaceutical companies. But studies done by industry are well known to have positive results far more frequently. Trials run by industry are 70% more likely than government funded trials to show a positive result. Think about that for a second. If EBM says that 2+2 = 5 is correct 70% of the time, would you trust this sort of ‘science’?

Selective Publication — Negative trials (those that show no benefit for the drugs) are likely to be suppressed. For example, in the case of antidepressants, 36/37 studies that were favourable to drugs were published. But of the studies not favorable to drugs, a paltry 3/36 were published. Selective publication of positive (for the drug company) results means that a review of the literature would suggest that 94% of studies favor drugs where in truth, only 51% were actually positive. Suppose you know that your stockbroker publishes all his winning trades, but suppresses all his losing trades. Would you trust him with your money? But yet, we trust EBM with our lives, even though the same thing is happening.

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Dr. Michael Meguid was a professor of surgery on duty at Boston City Hospital in August 1976 when he was called in one night for an emergency. An 18-year-old man named LeRoy had fallen from a ledge. LeRoy had a fractured thigh bone, which an orthopedic team worked quickly to repair. When they were finished, the patient was taken to the intensive care unit. He was going to make it, Meguid remembers thinking. To his surprise, LeRoy died 30 days later.

In the hospital, under the care of the orthopedic team, LeRoy’s only nourishment came from an intravenous drip. During those 30 days, LeRoy’s calorie intake was equivalent to “about two candy bars a day,” Meguid wrote in a 2015 Columbia Medical Review article.

LeRoy received about a sixth of the total nourishment that was required for him to survive and recuperate after two major surgeries. In the absence of that nourishment, his body resorted to converting his muscles to glucose. LeRoy’s medical records did not state it, Meguid says, but in reality the cause of his death was hospital-induced malnutrition.

More than 40 years after LeRoy’s death, new research indicates that malnutrition in hospital settings remains under-diagnosed and — even when detected — undertreated. Experts say this persistent lack of awareness about the dangers of malnutrition could be contributing to as much as $42 billion in healthcare costs, 54 percent higher readmission rates, hospital stays for malnourished patients that are twice as long as expected, and an unknown number of deaths.