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You seem to hold biological explanations to the usual high standard while psychosomatic explanations are held to a much lower standard. XMRV had to involve a specific claim because that is the expected standard in biological sciences. There was an effort to verify the claim because again that...

The main difference appears to be that there is an unwritten rule in medicine that says you shall believe in psychosomatic explanations without question. That makes it especially important that we patients, who are apparently one of the few capable of questioning this, express doubt. This is...

We do questions explanation that make no sense. For example the idea that XRMV was the cause of ME/CFS. Why should we not question the idea that ME/CFS is perpetuated by thoughts and behaviours? There's nothing in there that is any more convincing than the XRMV stuff.

I think it's a mistake to avoid it. To change medicine people need to talk about the stuff within it that is dysfunctional. Even if it makes you feel uncomfortable to question unquestioned dogma. It is the only way to change things.

That they misrepresent criticism of their illness model is a sign that this is a weak spot, not that we have to criticize some other aspect. They will never engage with the substance of criticism whether that is illness model or the failure to control for bias in their clinical trials. In fact...

You seem to think that avoiding this term or topic would produce better results. I think we're basically asking the psychosomatic camp to admit that their work is worthless. They will never admit that. I don't think it's a good idea to let them dictate what we're allowed to discuss. Their...

I discussed a similar concept, "excessively intense focus" here https://www.s4me.info/threads/my-clumsy-attempt-to-describe-a-possibly-rarely-discussed-symptom.11743/ I can't make sense of the author's conclusion: "Compared to the database, an enhanced P3cue component reflected hyper-vigilance...

I think the pyramid is a dumb idea because it makes people think there is an easy method to determine what is reliable and what is not. It reduces critical thinking when more critical thinking is needed. The reliability of evidence depends on many things, not just a classification. There is...

It would have to involve a nurse coming to the patient's home to take blood and/or arranging transportation to the lab if the patient felt too unwell for traveling on their own. Depending on what is being investigated.

Normally patients are tested and investigated when it's possible and/or convenient for both patient and staff. This might not work well if the illness is associated with symptom flares. By the time testing is done, it might be far too late to discover what actually happens during a flare. The...

I've definitely made myself worse with trying to cure myself with dubious treatments. Better to accept that it's incurable (for now) and try to maintain quality of life. Also a lot of money wasted that could have gone into research. I think one reason this happens is that nobody tells us the...

If you want to listen to this part, it starts here

I understood that some of these proteins are involved in creating the inner structure of cells as well as the cell membrane. Altered cell deformability could have something to do with these proteins. There were other functions too that I forgot and didn't understand. At first I couldn't...

Sampled some more, and my urine seems completely normal in every aspect although I don't go around comparing mine to that of others. After a week of low activity, I did a longer walk yesterday (before this idea came up) but that didn't have an effect on urine. I don't want to make myself crash...

I am very skeptical and would like to see some evidence that isn't affected by biased reporting, and then some evidence that these symptoms are actually comparable in their characteristics to the symptoms of real patients who are told they have a psychogenic illness.

I don't have a habit of smelling my urine. I just did and it smells lightly of organic things and I think I can distinguish a hint of ammonia too. Not very chemical but organic. It reminds me of sweat.

Make a poll.

I was mildly disappointed that there were no biblical stories about people that possibly had ME. We have to look to present day Norway to read about miraculous recoveries from ME. Then there was a lot of commentary about fatigue in various illnesses and it was uninteresting.

I skimmed it and it fell below my low expectations.

The treatments section gives the impression there is a variety of treatments out there. This can mislead patients into thinking they are missing out on some special treatment (given by specialists that have figured out how to treat ME/CFS). https://me-pedia.org/wiki/Portal:Treatments