Wish the “thought” of FND had never occurred. Neuro issues increasingly being lazily slapped w the catch-all label instead of proper investigations. Can sound convincing on the surface; no scientific basis. There is always an organic cause. Find that & treat it (often infection)
People with chronic illness are frequently accused of identifying with their illness.
They’re not.
They’re signalling to you that their illness has taken the social markers of their identity from them, but that they’re still there, a tiny ember in the ashes of what they’ve lost.
@nashville_brook@AetherFox_ This is the moment where you have to tell them to stay on the rails / never go overboard (so to say) and if they don't stop you should tell them that you might consider a formal complaint. With an ignored chronic illness you have to get into the mindset of Mr. Burns' law team.
@touchmasterodd@davidtuller1@ZacharyGrinDPT I think he's a typical science bro who just took one additional turn. I encountered a very similar one who totally bought into the cheap (biopsychosocial) gut-brain axis theory of IBS (basically polyvagal theory applied to your gut) and saw any other explanation as heresy.
@percidae_public@MeckerMutti Als junger weisser (und früher darüber hinaus auch noch sportlicher) Mann habe ich genauso so viel Scheisse mit Ärzten erlebt. Es spielen also noch andere Faktoren rein.
@Kranke_Medizin 2. Laut den Guidelines werden dafür normalerweise andere Mittel verschrieben und dann auch für bis zu 10 Tage. Am liebsten hätte mich der Boomer wohl als gesunden jungen Mann bezeichnet, aber es gab Zeugen, so dass er sich nicht getraut hat, auf das nächste Level zu eskalieren.
@Kranke_Medizin 1. Ich habe neulich von einem mobilen Arzt der 116 117 aus reiner Schikane wegen einer bakteriellen Infektion für 5 Tage Cipro bekommen, weil ich laut geworden bin, als der Boomer versucht hat, mich in eine gewisse Ecke (bla bla bla junger Mann) zu stellen. --->
Medicine consistently and flagrantly flips the script to blame the patient for its own failures.
- Being socially isolated due to pain becomes you are in pain due to being socially isolated.
- Deconditioning due to disability becomes you are disabled because you are deconditioned.
- Depression or distress due to disease burden becomes you have disease burden because you are depressed or distressed.
- Nerve damage due to untreated pain becomes you have pain because your nerves are too sensitive.
And so on and so forth.
@rhymeswithvery@GrandeBettina Yes/No, it's really hard to judge from the outside ... perhaps they just act as service providers the insurance sector and the public healthcare systems who offer the right tools to legitimize cost reduction measures.
@ChiraleStruktur@GrandeBettina@aerztezeitung 2. Die SIBO-Hypothese von @MarkPimentelMD, welche IBS-Beschwerden post-infektiös und mikrobiologisch erklärt, wird dort von einigen Ideologen und parasitären Karrieristen/Opportunisten auch nach Jahren weiter bekämpft, so dass Patienten in Europa weiter leiden grundlos müssen.
@ChiraleStruktur@GrandeBettina@aerztezeitung 1. Das gleiche passiert in der Gastroenterologie. Dort existiert das biopsychosoziale Darm-Hirn-Model, das alle "funktionellen" (also eig. wiss. unzureichend verstandenen) Magen-Darm-Krankheiten erklären soll und im Kern nur Psychosomatik mit einem Newspeak Update ist. --->
Some branches of neuroscience (and science in general) are unlikely to see real progress for a long time. This stagnation stems from an academic echo chamber that very effectively silences dissent. young researchers introducing new ideas are often marginalized or driven out before they can establish themselves. There must be quite a few of these people who left academia this way and are now working in industry. The current institutional framework simply won't fund or validate anyone bold enough to challenge entrenched ideas. It's a conformist paradise gated by tenure. BTW these stagnant areas tend to have dominant senior people who have never been wrong and shall remain "authorities" forever.
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One week after DDW 2026, we’re still reflecting on an inspiring few days filled with groundbreaking science, meaningful conversations, and exciting new ideas in digestive health research.
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HIV activists ACT UP seized the FDA. They dumped patients ashes on the White House lawn. They marched coffins through DC.
And it worked.
Long Covid patients are being told to wait politely. Polite has never moved the world on a health crisis.
A friend asked me why I care about the identity capture in the chronic illness space. People's lives are hell, why are you bothering to intellectualize it?
The reason is that I believe these things are deeply interconnected. I think this kind of structural, social analysis is actually far more important at this stage than the science.
Science is done by people; is funded by people. Yes, there are hard science problems to be solved, but the bigger problems are upstream - social and political issues that prevent funding, or that see the wrong kinds of research get funded and the right kinds of research get ignored.
To solve Long COVID, we're going to need billions, probably hundreds and hundreds of billions of funding. Way beyond big pharma. Do you think that will ever happen while the HHS is run by pandemic deniers and most of society is in denial? I don't think so.
We need to find a way to change this. Again, I think the HIV historical example is illustrative - you need to create social and political movements in order to catalyze the science that's needed. It simply won't happen otherwise.