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I used to be a big believer in 2017 in what Ron Davis was doing. It seemed like he had the proper credentials and equipment to do proper science and it seemed that he was building something solid. But alas, i was naive. Sometimes you need a reality check i guess. In hindsight, Janet talking on...

Doctors say a lot of BS. It would be nice if a proper trial was made to see if treating these infections slows down disease progression or not. Even in ME we have seen a lot of talk about pathogens for decades but nobody wants to do a proper trial. There is no money for ME, sure, but AD gets...

Does anyone know if anyone tried targeting those pathogens and if it affected disease progression?

Well, it's true. Still no treatment at all and no phase 3 trials ongoing or even planned in future years. Better than the people who have been saying since 2016 that a cure is months away...

i can be ok with them not acknowledging how severe the illness can be but this whole "your doctor can help" thing seriously has to stop. NOTHING CAN BE DONE, THERE IS NO TREATMENT. This needs to be written everywhere, in full caps if possible.

He is probably referring to the UK Biobank data - it was analyzed and the IDO2 mutations are not more frequent in ME/CFS patients than they are in controls. This was acknowledged by Janet Dafoe in a tweet, which was something like "yes Ron has looked at the UK biobank and there is no difference...

All these sort of prejudices come simply from the fact that doctors think patients with MUS do not really have an illness. Therefore, the way the patients presents themselves ("as if they really had an illness") is seen as highly problematic and totally out of place. It's a cognitive bias (halo...

Here is a video of Angela Vincent talking about IVIG's immunosuppressive activity in the context of antibody mediated CNS disease. She says: "i'm surprised it works so well". (15:48)

It has been a while but back when i was looking at autoimmune encephalitis studies IVIG was always referred to as first line immunotherapy. Given the nature of AE (it usually kills the patient quickly if untreated, catastrophic neurological failure etc) i assume it's not hard to see if a...

To be fair though, high dose IVIG (2g/kg) is very effective in autoimmune illnesses of the CNS that are mediated by autoantibodies like autoimmune encephalitis and Guillain-Barre. But maybe you are talking about low dose IVIG...

I mean, this seems huge, compared to what we're used to seeing in ME/CFS research. 20 clinics just in Germany cooperating together administering expensive IV treatment is not something you see often. 50-60% full recovery out of 150 patients? Of course we don't know if it actually works until it...

Sorry i don't remember which study it was, maybe someone else does. I mean, we will know soon enough what's inside. I don't see how they can market, let alone publish a study on it without saying what's inside..

Feels like i'm playing the devil's advocate but there is at least something interesting about this. If i recall there was a study showing that oxygenated blood coming out of the lungs had inflammatory cytokines that previously weren't there. And there are also studies showing that most patients...

Then what is the discriminating factor? I've seen people with dementias in the early stage that don't have measurable deficits in neuropsychological tests. But they are taken seriously by doctors. Why? How can they tell that they are different? One could say the difference is that they don't...

It's funny how the neurologists get the cognitive stuff completely backwards. My experience is that i'm very aware of how my brain is not working, and i can tell when it's making errors due to the cognitive impairment. It's like i know exactly how my brain should work, how the circuits should...

There is one thing i really don't understand about OMF. They seem really convinced about the metabolic trap hypothesis, and seem to have spare cash, so why don't they recruit a couple hundred additional patients (or more) and test them for the IDO2 mutations, like they said they would in 2019...

Yeah the classic "lets use 40+ year old technologies and tests with laughable sensitivity, if nothing comes up well it's just the fatigue" as if that means anything..

"functional" is kept intentionally ambiguous for political reasons. The meaning can range from "it's definitely psychological and there's nothing wrong" to "this organ is not functioning properly and we don't know why, well at least we can't see obvious damage that would explain it". That way...

I remember he said a couple years ago severe patients have increased hydroxyproline and that it was a sign of collagen degradation. I measured it and mine was high too.

You know, if they applied all sorts of advanced technologies to analyze the brain of these "psychosomatic syndromes" i bet they would come out with a ton of abnormalities, and, god forbid, might actually give some indication of the cause. But you know, since they have already decided that...