Search results

Anyone know if we're likely to see the James PET tracer paper before the Charite conference?

How can the lay public sort it out? It's funny, so many people have horrendous stories of mistreatment by doctors but they still want to believe there is nothing wrong with the system these doctors belong to.

Ten years is an insanely long time. PwME, especially severe, die all the time sadly. Just this week there have been something like 4 deaths reported. Why can't they do this faster considering how important this finding seems? I think we need better systems for posthumous donation for pwME. I...

Do you know if this was the same for the other drugs they tested?

A concerning thought. I've just checked and apparently microglia can regenerate so hopefully this is potentially reversible if it's true. https://pmc.ncbi.nlm.nih.gov/articles/PMC5540680/ However it says they renew at 28% per year so if this were the cause of severe MECFS it wouldn't account...

That's a little concerning...

Which other studies have found upregulated FOXP3? I know they exist but can't find them on here or remember which they were.

I knew I'd seen galectin-9 somewhere before! This lot seem like pretty serious researchers. Interesting that they found dysregulated B cell and platelet signatures and FOXP3 upregulation in vanilla MECFS. What does this actually mean though? the parts about activation and exhaustion are vague...

Excellent news, thank you. Do you know what potential biomarkers they are looking at?

There is evidence that people with MECFS sometimes improve a little or a lot. It is not the norm but it is common enough, especially early on. This is probably why so many people think they recovered from brain retraining and stuff. The odds of 6/10 patient with MECFS as we understand it...

So there's no mention of how many patients they studied in this abstract. Is this a valid method of comparison? Comparing fresh blood against a database in this way? Edit: I really dislike how they use 'idiopathic MECFS' here. Reminds me too much of the BPS 'idiopathic chronic fatigue'...

I believe at some point in a presentation or lecture he gave Afrin claimed MCAS can cause spontaneous human combustion.

Agree with what you're saying, but I think the fact it is Fluge and Mella who ran this trial as opposed to say, the US recover program makes it more likely that they carefully selected patients representative of most pwME as we are familiar with them.

This is interesting, especially the interferon part. @jnmaciuch would reducing type I interferon resolve the kind of mechinism/signalling loop you have proposed in ME/CFS?

I don't know. Step counters are so cheap there is absolutely no excuse.

They do seem to have got a lot better. The other thing is a lot of people try something, say they're feeling much better and crash horribly a few months later. These responders stayed better for two years.* *at least one has since partially relapsed and been retreated as per the last case study...

I can't think of any reason why it would. From what I can see, it's exactly the sort of bullshit that led to me becoming severe in the first place.

I agree. I was talking more about the scale of harm than individual cases. I am very glad I discovered S4ME when I did because I can see myself having gone down that route if I hadn't.

The Born Free protocol and CCI stuff are dangerous absolutely, but nowhere near as dangerous as the fact that it is NHS policy, and the policy of countless other health systems, to treat everyone with MECFS symptoms in a way that will make them sicker, and when they get really sick, abandon them...