Michelle
Senior Member (Voting Rights)
I despair that no one seems capable of a basic lit review anymore. I mean, not just @Learningandlistening. I've seen so many researchers over the last six years going on various media outlets touting the cortisol or viral reactivation studies they're doing on LC and just thinking, seriously?! Would it kill you to spend a half hour at PubMed?! And why are grant reviewers still giving money to research that has been done to death for 40 years already?
Quite. As one who was once an aspiring academic in the humanities, coming to medical science as a patient was a very steep learning curve for this very reason. It took me a good decade to work out the difference. In the humanities, you're rewarded for novel interpretations. As long as you're not just baldly cherry picking or stating what is obviously false, it's all about squeezing some sort of innovative meaning out texts. If all you're doing is assembling a novel argument, it's then a straightforward job about collecting proofs to prove your thesis.
Except that is not how science works (or should work). Years ago when we were in the midst of some argument here about CCI or hEDS (forgive me if I can't be bothered hunting down the exact thread), we ended up in a discussion about how science works. @Jonathan Edwards was, if memory serves, paraphrasing Karl Popper, by saying that science is really the language of "no." You come up with a hypothesis and then you exhaust all the reasons for why that hypothesis is wrong before tentatively saying that it is true. This runs so counter to human nature that even most scientists struggle with this. Our natural inclination is to see what we think is a pattern and then set about establishing that it really is the pattern we think it is. That is why good scientists go to such lengths to control for this. Social science can be a middle ground between the humanities and the "hard" sciences in that it understands randomized trials, controlling for biases, the use of statistics, etc. Yet because it's usually about human behavior, social science simply cannot control for all its variables nor run the same experiment in the controlled way that one can in a particle collider or petri dish. Thus, it still often leaves us with a lot of interpretation and few objective facts.
Ah, yes. That oldest human effort to find meaning in a world that feels incomprehensible. And our oldest system for creating narratives out of what is often just coincidence. Because "shit just happens" is too painful to accept even if it's often true. (See the Book of Job or Ecclessiastes/Koholet)
@Learningandlistening I don't know if you're still reading this thread. I salute your willingness to enter the lions den of S4ME knowing we are increasingly notorious for being a bunch of curmudgeonly pedants who are sticklers for methodologically-sound research. But don't take it personally. We're equal opportunity here. Many a biomedical researcher has left in a huff because folks here have pointed out the problems with their research. We always know the good ones, though. They're the ones who are grateful for the feedback, who stick around and do some learning and listening.
I'll be honest, I've not read your piece nor most of this thread. I've been sick for over a quarter of a century and I've already read this story so many many many times before and I have better things to do with my sparse energy. I was all in on the brain-retraining idea when I was first diagnosed. On mindfulness meditation, on reframing how I looked at my symtoms, on graded exercise/activity, on anything that would give me a sense of agency as my ability to function continued to deteriorate. Especially when I was finally forced to navigate the disability and social welfare systems. There had to be something I could do that would save me from this demeaning roulette wheel of potential government benefits. But there wasn't. I just got sicker and sicker. Accepting that there was nothing to be done felt intolerable. And I suspect that is where your piece comes from. It just feels too intolerable to accept that people can get a virus through no fault of their own and suffer so much and there's nothing to fix them. Too intolerable to accept that the people who do get better do so because of luck (the technical term is "regression to the mean") rather than some action on their part. I feel your pain there. Have felt that pain for decades now. But I'm not sure you understand the pain you are causing because you cannot sit with that discomfort. And you have indeed caused real pain. Real damage to people who are already so vulnerable. I hope you will learn and listen to that harm. Use your training in these beautiful traditions where prophets and sages and gurus and teachers and mystics have sat with that pain and suffering and often come to a similar truth: do not do to others what you would not want done to you, that when one suffers, we all do.
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