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Why do I have doubts that this is NICE compliant?

My hands and feet swell up and become red or purple. It almost always happens when they are below my heart, and sometimes just randomly when lying down as well. I also have the temperature things @V.R.T. talks about. I’m currently lying with the window upen and no shirt, feeling in my upper...

Hei @Bivox - hyggelig å høre at du følger med her! Takk for arbeidet ditt for oss! I seem to remember that you once mentioned (maybe at Digging Deeper?) that you always ask the children to answer first, without letting the parents talk. Is that correct? And that children often know more about...

@wastwater could you please indicate if your posts are from AI or if you’re written them yourself?

Or because it doesn’t work and the perceived effects might be due to bias?

I think you should go back and read JE’s comments. Most drugs are not safe. That’s a very distasteful speculation in my opinion. If you want to talk about sources of despair, why not mention the negative consequences of repeated failures of treatments that were tried on false premisses due to...

I’m on antihistamines due to mainly pollen allergies. After I became bedbound my lips will swell up when eating all kinds of normal foods if I’m off the meds. So now I take them all year.

I don’t know about direct fatalities from experimental treatments in ME (I have not looked for them), but experimenting with drugs in general has lead to many fatalities. Fatalities and negative effects in general are also under-reported. Jonathan Edwards almost had to sue someone to get to...

That list was interesting. Brain retraining as #3 and prayer as #4. Which might tell you something about all the treatments below those!

It done properly and for long enough, there are some objective outcomes that could be used like ability to work/go to school, time spent upright (if OI is an issue) and step count. But that would require a really good sense of baseline measurements to ensure that the patients don’t just replace...

That used to be my view as well, it sucks to go from «maybe someone will be lucky if we try enough things» to «we have to do it the hard way and figure out what to target first». Although it means that there are researchers out there that know how to maximise the probability of finding...

And the institutions that supposedly rely on the science.. Not much left then! It’s not just about resources though (and it’s not like we have an excess of resources either), but I won’t go through that here. If you’re interested in the topic, there’s a long discussion e.g. here...

We probably wouldn’t be able to differentiate between them so that’s no surprise.

I wonder what the activity analysis will include? Yet that knowledge doesn’t stop them from using primarily subjective outcomes..

No wonder they found symptoms in some if they asked for it when recruiting.. And no wonder there were some without symptoms if they also used that as a recruitment criteria! And no wonder the controls didn’t have symptoms if that was used as an inclusion criteria! The abstract starts to look...

We’ve all been there, some are there still and some keep going back and forth. It’s a perfectly reasonable reaction to this nightmare. If find it exhausting to constantly search for a cure. So I’ve stopped for now. (Edit: and I have little confidence in being ably to find it anyways) The worst...

We actually don’t know the causal pathways here. I think it’s reasonable that the pain and malaise might cause some changes in behaviour, but I wouldn’t be surprised if disease can cause changes in behaviour directly as well.

If we assume that these findings actually are relevant for ME/CFS, could the weak binding to HHV, Covid and BB lead to relatively more binding to something else? Like random junk?

https://www.neuroneeds.com/whole-genome-sequencing-in-18-patients-with-chronic-fatigue/ This is not a published paper, it’s a blog by a commercial actor that sell these tests and services. They only had «data» on treatment response for 7/18, but there is absolutely no mention of the actual...

I do not care which label they have given it. Based on this paper it doesn’t seem like the authors use the labels consistently. I’m looking for which symptoms they had. But it doesn’t look like there’s any data on it.