Medically unexplained or not? Be aware of a somatic cause of Medically Unexplained Symptoms, 2022, Hilderink and van Vugt

The whole system is to blame, so individual blame probably doesn't mean much here. Medical blame is for medical acts in a clinical setting, this is at a higher level, of making decisions that essentially force bad outcomes in clinical settings, but individual practitioners are complying with their instructions, even though it results in harm. There is no equivalent responsibility at those levels, they are making managerial or administrative decisions, not clinical ones.

The failure was in refusing to acknowledge reality, and prefer quackery instead. There really isn't anything to account for this, hence why things are so broken, medicine just doesn't acknowledge its own faults. It's going to be hard because it's not reasonable to acknowledge this failure while changing nothing. And any change to account for this failure would essentially result in massive systemic reforms that give patients actual enforceable rights. And no one has the appetite for that. The balance of power is meant to be totally one-sided.

Honestly at this point, the odds are far higher that a few years from now a medical AI unblocks all this. Medical institutions are too dysfunctional for this stuff, they have become stagnant and purely careerist. Self-interest above everything. We'd honestly do better just building our own healthcare if we had the resources.

 

Here's a Google translated version of the full article:

 

Very much agreed, @Solstice.

"A better return on investment", absolutely! Instead of the disability insurance industry treating most claimants like criminals, it seems a more financially beneficial action for them would be to invest in biomedical research.

It may be paltry by comparison, the money they have to shell out in lost court cases. But wins for pwdisabilities set legal precedents.

As well, all the money they hand out for non-evidenced based treatments could be better spent.

 

From @Grigor 's link in post #22 the symptoms described for patient B sound similar to the ones I had before I was operated on for Normal Pressure Hydrocephalus (NPH) with an ETV. I had developed a wide stance and I staggered a lot. I tripped over my own feet a lot and walking in the dark was, frankly, dangerous. It was also very embarrassing because I would often cannon into my husband or other people walking close by when we were walking together. From first diagnosis until surgery took place was 7 years during which time my staggering and other symptoms continued to get worse. The first advice I got on diagnosis (to deal with the headaches and pulsatile tinnitus) was to tell me to stop taking so many pain killers, despite the fact that I had already told the doctor I didn't take any (nor was I prescribed any) because OTC painkillers had no effect on me at all. But a patient saying that OTC painkillers don't work is believed to be a sign that the patient is a drug-seeking hypochondriac, so that made things even worse for me.

I couldn't get Grigor's name to go blue for some reason, I'll ask a mod.

Edit - I was spelling it wrong!

 

As I said earlier, imagine someone labeled as a pwMUS, finally after many years, getting the definitive test that supports a biomedical diagnosis.

What if, and I think this is quite possible, this biomedical diagnosis is considered a new condition, and not one suffered with, and dismissed by medicine for perhaps decades.

This could very likely be the case for pwME.

 

I am beginning to think there needs to be some sort of charter just in order to make sure that the plight is logged accurately for each person with the illness (probably MUS or any other new variation they come up with together in order to cover the pots people get chucked across) and mortality/death rates are taken as well as severe disability (if we want to call it stage-wise then those who end up stage 4). Which things like cancer or other illnesses use to measure whether treatments actually work.

But yes also more importantly missed diagnoses and misdiagnoses. And the bad ones reported. The tables need to be turned on the excuse of dump it there do nothing and you'll never ever be called on it. So it becomes a self-fulfulling prophecy of it being a great diagnosis to make (you never find out any different).

But this can never be safe and therefore accurate as long as psychiatry (well in a larger sense 'somaticists' - as I think that profession is dividing down the middle with certain neurologists - but also removing far from the specific powers that are only implicit to that area and poorly controlled due to hierarchical and ideological and conflict issues) are allowed to be anywhere near these patients. And history demonstrates this safety issue/protection required.

It says a lot about a lot that even at a life-threatening stage ideology could be so important to some/so sewn into the system they will prevent access to those who do not let it stand in the way of trying to help and understand what is happening even when the consequences and situation could not be more serious. I wonder whether the side-effect of the way the mental health act and 'duty of care' work (particularly when adding in the dodgy CFS research) has meant a death under psychiatry, even if inaccurately referred, and trying no biomedical support is acceptable where not handing over but trying (with no guarantees) has career implications currently. Even if that person turned out to be misdiagnosed (if there is no autopsy how will that change anyway).