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And emotion attached to various (non-evidence based and probably false) causal models for symptoms and gurus promoting them. You see this in our community too when you push back on some con artist MD or when you point out that the symptoms are not caused by bendy joints, leaky spine, enterovirus...

It would not be fair to say that ME/CFS patients are obsessively focusing on some random condition they don’t even have. As everyone knows, FND proponents in the academia have been trying to subsume ME/CFS, FM and other “functional somatic syndromes” into their thing forever.

He has been uniquely influential in the anglosphere, both in government circles and in the general medical and popular culture, in portraying us as subhuman. As a result of his actions, I’ve been stomped on like a piece of dung and crushed by so-called medical professionals, so-called friends...

I would say this man's theories have been uniquely damaging in history of medicine and his papers destroyed my life in many indirect ways.

OI is a key feature of this illness for me. Not so much a symptom, but a pervasive issue that ruins all aspects of my life.

It’s time for these long covid researchers to read the goddamn literature on ME/CFS and acknowledge the decades of work that came before them. Stop wasting time on useless avenues like cytokines which are not useful biomarkers. This has been known for decades.

Sooo it turned out to be SND (structural neurological disorder) after all.

Not helpful to anyone except the likes of these FND scammers. For FND patients, being deceived into thinking your cognition is better than it is could get you injured or killed eg if you are tricked into thinking you can drive a car or use a stove again.

These sorts of statements, not backed by any evidence, do not portray us in a good light. No off-label treatment has ever been shown to have efficacy. Therefore, it’s good that the GMC makes it difficult for practitioners to harm our patient population with quackery. Having said that, our...

Haha

It’s very common for medical researchers to exaggerate the prevalence of their pet condition so that they can exaggerate the real-world impact of their work in grant proposals etc. In the FND field, there is a clear expansionistic tendency to subsume more and more inside the FND category...

Has anyone not affiliated with RD tried getting in touch with RE to find out why this project was abandoned? I always assumed it didn’t pan out in subsequent testing so they just quietly dropped it (like a bunch of other things they used to talk about but don’t anymore). So, this news of an...

The nanoneedle isn't measuring myelin integrity.

Thread with a skeptical view on the topic of neuroimaging in FND:

I understood that to mean that it's not enough to just get any grant, you need an NIH grant to get tenure at UC Irvine. Given that he's now a principal investigator with his own lab, I assume he got tenure. It seems like a very specialised and obscure area of expertise. Perhaps once he left...

Would be good to know more about this. The blurb from ME Research UK implies that they were able to detect a difference between ME and MS, though I should add that a statistically significant difference between groups does not necessarily mean the test can differentiate in a clinically useful...

It’s just CBT with some quackery on top.

This sounds much more prone to bias than what they used in the CODES trial which was seizure frequency.

It's good they were able to use an MS control group. https://www.meresearch.org.uk/me-research-uk-and-the-me-association-announce-funding-for-a-study-that-aims-to-create-a-diagnostic-test-for-me-cfs/