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This is really the whole problem with the prejudice, isn't it? They cannot even imagine what patients are experiencing. They don't believe patients because what they are describing is too strange and far from their own experience. They need to believe in "distorted perception", "hysteria"...

It sounds like they are in the process of discovering fatigue. Fatigue makes a person more selective in their decision whether to do something or not.

Garner doesn't seem to understand the topic of placebo and nocebo well. If a person is told that they're about to receive treatment that will reduce their symptoms, then the person's mood will improve and their behavior will change to reflect the expectation. It's not surprising that the person...

You're making it hard to engage with the theory and evidence when it's loosely connected thoughts and bits of information scattered across various social media and studies that seem to have little relevance or are of poor quality. It's not even clear what your main hypothesis is. I haven't...

@nataliezzz I think many patients here have been through the phase you're in right now. Patients without answers and solutions, often set out to find the answers and treatments themselves. They are highly motivated, willing to take risks, and looking for a solution. They fear the possibility of...

Hi, How does the evidence from sleep studies of ME/CFS patients fit with this hypothesis? Would the relevant studies be able to detect this issue, and if not, why not?

The message is also that you should be open-minded (in other words, not use critical thinking).

In his latest tweets Garner sounds like an unhinged conspiracy theorist. He is extremely motivated to invent a story about a miracle cure that is suppressed by the patients themselves, to the point of coming up with absurd arguments.

Both of these have been implicated in ME/CFS before and are kynurenine pathway metabolites.

If it can be done in the clinic, then it can be done in a clinical trial. It's just an excuse for the lack of effect, which reveals that the clinic has little to offer beyond fulfilling the desire to receive treatment, be listened to, etc. Also, if they were good at actually understanding the...

I think we can safely assume that the illness reduces steps per day and that an improvement will be followed by a sustained increase in steps per day.

Even if ME/CFS was a condition with a need for some kind of brain retraining, nobody needs artificial positivity, detached from reality or in denial of it. This would be the WRONG kind of retraining. The right training would simply consist of learning to do what you need/want to be able to do...

Good article. Well done as usual. It is shocking and disturbing. I also notice that many people trust research papers without thinking about the possibility that the information might be false. The other day I met a psychology student who told me a positive attitude improves survival of cancer...

I remember that my serum protein electrophoresis curves were outside of the norm early in the illness, at two different time points. Albumin levels were low and one of peaks was outside the norm. Also, I was treated for low iron levels, without apparent cause. Several lymph nodes were also...

SMPDL3b is related to CDP-Choline, which has been associated with ME/CFS and peroxisomal dysfunction.

This story is made-up and nothing is real or what it seems here.

Depends on the severity of the symptoms and the dose. I took a low dose and it didn't have a dramatic effect but it was noticable. I felt calmer, the heart felt less irritated, there was less chest pain. Ivabradine also felt like it was fast acting with an effect that declined after a few hours...

Brain activity is the exertion. Being exposed to a complex environment with many different things going on, music, people, and so on is exertion, even if the person is just sitting there. The brain has to process all this and when it's fatiguable it won't be able to do it for long. As it becomes...

I think the BPS people should be ignored as much as possible. Fearing irrelevance, they will try to send the message that they are still relevant. So let's send the message that they don't matter, by avoiding treating them like a credible partner in a debate. DecodeME will hopefully be a major...

My impression was that most medical fads and quack treatments are invented in the US and then spread to other countries. The unaffordable healthcare there makes people search for alternatives.