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The culture of disdain is very deeply rooted within medicine. I remember reading a literature review on autoimmune encephalitis, which is an illness with autoantibodies directly attacking your brain, where you can easily die within weeks if not treated. When I read that 30% of those patients...

You might be right, but let me elaborate what my thinking was: Historically debate on ME has been hijacked and turned into a mental vs physical kind of thing. This is not advantageous to us because someone like Wessely is regarded to be an expert on mental disorders, and because the patients...

If this thing turns into an appeal to authority contest (which it very well might, if showing facts and data was enough we wouldn't be in this situation) we could have an esteemed psychologist or psychiatrist in the film talk about how these treatments don't work and the illness probably isn't...

The people here thinking 10 man studies will get us anywhere have some serious wishful thinking. The truth is, if a study doesn't have at least 100 patients it is completely worthless. It shouldn't work like this, but it does. A small study is supposed to signal to other researchers it needs...

In simple terms: build the marketing around the mild patients, pretend the severe ones don't exist. Water down the diagnostic criteria to include more patients, even healthy people. Make the "illness" seem trendy, offer a panacea that seems to work for everything (CBT, SSRIs). Nobody can prove...

These people think any chronic illness is the patient's fault. They just don't say it because it's politically incorrect and would really hurt their marketing. The reason they insist on ME so much is because nobody is on our side so we are easy prey, not because they think ME is fundamentally...

If productivity doesn't increase with more funding and staff it means the incentive structure is broken.

This is purely a marketing move. The psych lobby knew that therapy had to be changed to go mainstream. Psychoanalysis didn't truly fit their needs because claiming that everyone has some hidden childhood trauma wouldn't sit well with many. Most people do not actually have any so you would risk...

It reminds me of a psychiatrist who told me my illness had to be psychosomatic because "statistically it's much more likely for you to have somatization than to have a rare illness that 1 in 100,000 people have". Maybe my illness is rare, maybe it isn't. Hard to know when doctors don't care to...

I didn't mean to say that people like JE or Pointing don't care, apologies. What I meant is that for every person who is by our side there is an army that is against us. I don't think that is because doctors are trying their best to look at the details and failing, like the premise of this...

"literally nobody" was a way of saying. Clearly that's not true, there's a very small minority of researchers and doctors who do care. But then again, you can find a very small minority of scientists that deny climate change too so that's not really saying much. I'm not belittling ME...

To be clear, i like that they are using AI to study fatigue. What i don't like is that 1) they go with the obvious BS narrative that a doctor can't tell tired and extreme fatigue apart and 2) even if they do find something specific about ME fatigue no doctor will take it seriously. Not sure...

This is a bad faith argument because there has been radio silence on severe ME by doctors for over 40 years. Let's assume that the issue really was that doctors can't tell fatigue patients apart. A good place to start then would be an illness where fatigue is the main characteristic and can...

What I'm saying is that we already know the specifics of fatigue in severe ME, and literally nobody cares. PEM and complete inability to exert yourself even minimally and do pretty much anything in life. In what other illness do they struggle to recruit patients for studies because they are too...

I'm sorry but the whole premise of this study is disingenuous and preposterous. The idea that doctors can't distinguish different types of fatigue because they all look the same is laughable. As a severe ME patient, my level of disability is extreme, unfathomable, impossible to grasp even for a...

There's a POTS clinic where i live. The head cardiologist insists that exercise is a treatment and has published studies on it. When patients say exercise makes them worse, they are told to take an SSRI and excluded from the study because he thinks PEM is a mental illness. A local group of POTS...

I often quote POTS to show how dysfunctional medicine is. It's an illness with objective symptoms and a diagnostic test, yet nobody takes it seriously. I think doctors use some kind of misguided instinctual understanding of the nature of illness to decide if an illness is "real" or not. They...

We have known stress can affect the immune system for a long time, but wasting disabled people's time, energy and money with useless psycho-social therapies is unlikely to be of any benefit. If anything, some of those MS patients will end up more stressed and anxious once they realize they have...

I mean, most people would consider schizophrenia a disease. A very severe and cruel one, at that. There is a reason it was called "Dementia precox" back in the days, before doctors realized that you could just fake results with psychology and social therapies, and then use those fake results to...

Maybe they should rename themselves to "closed medicine foundation". If we don't publish negative results we will keep running in circles forever.