Search results

Ah so I knew the Fukada critera weren't great but don't know much about them as a researcher.

I didn't know this. Was it by BPS clinicians? That might explain the use of the term 'malaise' which imo is not that much more helpful than 'fatigue'

Some quotes about the work following on from this

Will there be a way for severe patients to participate?

Made a similar calculation and came to the same conclusion

So do you think there's a chance it could work then? Setting aside the unclear hypothesis/reasoning?

I have just googled this peptide and seen it is considered an exercise mimetic. Isn't there a possibility it could mimic the biological processes of exercise that trigger PEM, since we don't know what they are yet?

'This work matters to patients because it suggests that treatments that help immature B cells use energy efficiently and survive immunological attacks may help people with ME/CFS.' What treatments do this? Fluge and Mella and Schibenbogen are pursuing B Cell depleting drugs, which don't sound...

I've discussed this elsewhere but I think I had a prodromal phase of about 6 years. Although sometimes I think about certain details, like the fact my hangovers tended to get nastiest almost exactly 12 hours from my last drink rather than as soon as I woke up, and how much sicker I tended to...

I actually do my best to avoid all psychosomatic threads. Today I have accidentally clicked through onto two of them and had a bit of a rant. You are right of course but I do feel a bit better now.

I am rapidly beginning to lose my patience with this messaging. Seeing the prophets of the false ideology that has deeply harmed me claiming that the information that would have saved my functioning is dangerous and causes harm is just too repulsive for words. The idea that it is knowing the...

This is so crazy. It's all so mad. Honestly madder than some of the antivax/wellness stuff. Like this is demonstrably more insane than, for example, people thinking that a drug or supplement that has no effecacy helps them. But cancer patients didn't use to be told out of fear they'd give up...

I am so sorry this happened to you. I can't imagine how hard that must have been. I know I bring it up a lot but I knew whatever was happening to me wasn't psychosomatic until my GP gaslighted me about it. He also basically refused to diagnose me, saying I 'didn't want' the label without...

I think I remember JE saying a while back there were already ideas on drug targets, and some potential ones may well appear when the dust has settled on DecodeME etc. But I may be misremembering. I have thought about this with regards to clinical trials. Because the risk of being worsened with...

This insane approach has dogged my entire adult life. Like has anyone stopped and thought how insane it is to claim that 40% of people seeking medical care are somatising? It's bonkers, it makes no sense. And telling people who are having extremely distressing symptoms that they are just normal...

Why is any study that acknowledges ME/CFS as a physiological illness using the Chalder Fatigue Questionare at all, let alone as a primary outcome?

Oh to be a fly on that wall 'While biological understanding of ME is still limited, planning for the future is essential. This includes preparing for the delivery of potential treatments, as identified by the ME Priority Setting Partnership.' So many questions that can't currently be answered...

If we think that ME/CFS after long covid is the same as ME/CFS after any other illness, then within a couple of years we will have pretty definitive answers on some JAK inhibitors with this, Wes Ely's bari trial and another one which I can't currently remember. I assume that different JAK...

Very well put. As someone who studied a lot about systems of control, capitalism etc etc, it was bizarre to find that I had still managed to be completely hoodwinked by said system, and then sort of be strapped into a front row seat to observe and be a victim of the emptiness and cruelty of the...

Oh this is very interesting, i didn't know about this. Edit: it says in the link that Finngen results are now 'publically available for the whole research community'. So it's entirely possible it's concurrent.