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I am revisiting this. It seems notable because the people assessing the 2-day CPET results were blinded. 8 of 14 ME/CFS patients showing reduced oxygen consumption on day 2. My feeling, without checking, is that this seems a little less clear cut than previous (unblinded) studies. Still there...

Many patients on that twitter thread are saying they have these as well. Do we all have EDS or is that just a nonspecific sign? Edit: Trish was faster.

I saw this on twitter today. To my surprise I have of few these papules on each side.

I also feel that patients often have what are probably comorbidites like as of yet poorly understood gut issues or strange reactions to food. I need to talk about this more when I have the energy. Or things like constant mild sinus issues. Or weird blood sugar fluctuations. Or this or that...

I'm not quite sure where I stand on this. I think we need to test all at least remotely plausible ideas simply because we haven't made much progress. On the other hand my feeling is that often patients are jumping to conclusions and prematurely forming beliefs on the nature of ME/CFS that...

I'm sure there is no discussion whatsoever about the problem of bias and subjective outcomes. Can anyone check?

How would that look like? Are you ready to change? The treatment is fantastically effective. Prepare to live a new life free of illness. All you need is put in good effort and we guarantee it will work. They seem to be in the process of discovering faith healing.

Fisher is that Aussie mitochondria expert, right? He seemed to really know what he was talking about.

Being aware of the pounding heart is not hypervigilance. It's not a choice. It's no different than being aware of pain. You can't just choose to not notice it. This is not "patients obsessively focusing on their heartbeat and amplifying their perception of benign bodily sensations until they...

Correct me if I'm wrong. The negative correlations should be expected or are least unsurprising, considering that anorexia nervosa is defined by low body mass. They also found some genes but how do we know that these genes aren't just the same information at the gene level? This doesn't seem...

Everything is due to trauma. Isn't this basically Freud again? Maybe with less sex obsession.

ME genome project. There was the human genome project, a big success. Now there is the ME genome project, hopefully also a big success. That's MEGP or MGP depending on how we abbreviate ME.

Will patients from outside the UK be able to participate? Have you considered working with researchers in other countries to reach the 20k target faster? Or is that not viable.

If the peak in teenage is due to hormones, and the peak in the 30's is due to something else, that might explain why there are two peaks.

I looked at how sex hormones change with age and it didn't fit the peak in the 30's well. If I remember right the hormonal changes are more gradual and occurred later. Of course you could come up with all sorts of ways to make is still fit, like thresholds. But it didn't seem to fit in any...

Is it because the biochemistry in every decade of life is distinct, and the biochemistry of people in their 30's increases vulnerability against ME?

It is not so easy to effectively communicate the situation we're in with less than 5000 words. You're touching an important angle here. The way things are currently being done does not work for us patients. What is required is a novel way to respond to problems like ME rather than building...

I think Science For ME should submit a response. Patients with ME and various other illnesses have been abandoned and a good way to change this is to invest in research to identify biomarkers and the underlying disease process...

Maybe in some patients the body reacts by trying to compensate with increased nutrient intake, in others maybe it reacts by reducing energy expenditure to a minimum.

I have the same reaction. Eating seems to compensate a little bit. My mental model of this was hypometabolism in the sense of lacking energy and trying to compensate for it, but it could also be thought of as hypermetabolism. Anyway the idea that there are changes in metabolism seem to be...