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Bad Science & How It Encourages Attacks On the Genuinely Ill
Good morning, everyone!
I've been thinking about science lately. Specifically, BAD science and BAD scientists.
Yeah– I said it!
Because all science is not sound, and all scientists are not above reproach. Good science is essential and open doorways to knowledge and technology. We NEED it more than anything besides compassion. Good science avoids harm and doesn't seek to mislead.
Unfortunately, not everything is as it cracked up to be.
Case in point– the glaringly BAD pseudo-science that's been done on my own illness, CFIDS. Not just once, but multiple times! There's a book out called Ostler's Web, which is about the first few decades of biased bad research led by leaders in the medical world who didn't want to admit a devastating, chronic, incurable illness was affecting hundreds of thousands of people. They were pressured by political interests and medical institutions who didn't want to admit they screwed up, so they doubled down by only granting funds to those who would back their bottom line: That it was not a “real” illness. When evidence came up otherwise, they suppressed it, whereas bogus data was encouraged and published. This has been a problem since the 1980s.
Patient advocacy groups and the doctors who treat them have been diving into the studies and finding flaws right, left, and center for YEARS. As I've had this illness since 1983, I've been following along on the research for decades myself, and I've been grievously disappointed over and over again.
So this article in the New York Times is just the tip of the iceberg:
www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html
(Note: It has limited access, but most should be able to read it for free.)
Its important to understand that BAD (as in fraudulent) science is what led all these so-called “experts” to suggest psychotherapy and exercise is the treatment called for with CFIDS (the proper name for CFS, which includes the immunological component). Doctors follow the studies and call us liars and malingerers (that is, faker) to our face! (Its happened to me to the point I dread every new doctor visit and now skip doctors altogether and work with Nurse Practitioners, who are trained to treat chronic conditions.) The asshole biased researchers HID the real data for years, until an injunction forced the researchers to reveal the truth– they tweaked and faked the data to back their claim that CFIDS was a mental illness, not a physical one.
I will NEVER not resent this type of bullshit from people who are in charge of caring for other people! Too often, they jump to conclusions that patients are just lying– same thing happened with Lupus, Multiple Sclerosis, and countless other diseases that strike more women then men… what a coincidence! (Historically, this has been a problem for CENTURIES.)
Bad science encourages not just doctors, but lay people, to suspect the genuinely ill are making false claims, which can lead to some very ugly personal attacks, not just bad care by medical professionals who should know better.
I strongly believe in pointing out the flaws in such flawed bogus research to educate those who worship science blindly, and never question authority. You can't believe in the pronouncements of authority– science itself teaches us this!! Good science is all about finding REAL evidence, and changing your mind when the scientific evidence clearly shows that it is warranted! Doubling down on a FALSE belief is NOT science, it is religious dogma dressed up in scientist's clothing!
Source: http://lucretiasheart.livejournal.com/1241837.html
