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'...
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?
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 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...
Oh no doubt, but in my experience people with ME/LC who talk about MCAS and stuff are quite vehemently against the functional paradigm.
To play devil's advocate, this is what they think about ME/CFS too.
This to me shows clearly how dangerous the psychobehavioural cult has gotten. They have...
I agree, but to be clear there is very little overlap between people who go in for MCAS, POTs, CCI etc and those who believe they have FND. In fact most people seem to adopt those labels in response to being told they have a functional problem. Because to them it is concrete, proof it is not...
Curious if this could fit together with the possible responses seen in the dara pilot, the Mensa Cd38 finding and @DMissa's recent B cell finding.
Edit: To be clear I'm not a Prusty devotee in the slightest but I'm just wondering if there's anything at all of value here.
I was responding to this bit in particular.
I have a lot of respect for Dakota and everything he does for the MECFS community. But I felt I had to say something in this instance.
@Dakota15 I am so angry about what ICE are doing in Minneapolis and can't imagine what you are going through right now. It is truly terrifying what is happen right now.
With respect, this MECFS stuff is life or death though. Simon Wessely propagates a policy which leads to the severe...
Very disappointing to hear. I felt a little bit hopeful after your comment yesterday. Is that our hope for severe services shot down or are there things afoot that might change things?
Yes precisely. And the retrospective anger when this finally breaks into the public conciousness isn't going...
But the team could request sibling participants to get in touch to give their consent - surely there is some way of figuring out who's sample is who's retrospectively?
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