Hi @Samuel. I can only contribute on the issue of prednisone (sorry, don't have anything helpful to say in response to your other questions). I asked on the other forum once about oral prednisone, and most PwMEs who've taken it get some relief form their usual ME symptoms, or at the worst, it...
On a brighter note, there are hints in the topic titles that some of the old guard are feeling threatened by recent developments in the field. They're not mentioning the actual elephant itself, but they're hinting at a large grey thing. This is encouraging, no?
I tried curcumin at one time. One problem is that you have to eat buckets of the stuff to reach the doses that have been reported as therapeutic in the literature (1 tsp whole root turmeric paste doesn't cut it). And let's not get started about how much is actually absorbed and what form...
I like this sort of thing :thumbup:
Its a really famous paper, and still THE go-to source to cite when you're concerned about studies making claims based on small samples.
Though this is not the biggest problem afflicting psyc research into ME. The biggest problem is systematic bias. I reckon...
No, I was serious. There's something not right with that definition. Stigma is to do with society's perception of an illness. Its not about power or control. Information can be controlled by the powerful and that information can influence society's perception of an illness. But that's just one...
I love this, @Subtropical Island! I feel proud of how I've learned to let go of all those worldly desires - to accomplish, to succeed, to adventure, to have fun - and still have managed to find much joy in my life. It is worth being proud of that.
I hope you do!
Here's how they define stigma:
Its slightly better than what you thought, @Jonathan Edwards. But not much. What has power got to do with stigma? Isn't it about the attitudes of society in general? And what's this about people with power "using" stigma "to bring about labelling, stereotyping...
Is it just me who's a bit sceptical about this? There are a few things niggling me. One is that its an observational study, and there might be lots of factors that determine whether or not a mother will use folic acid. The second is that ASD is a low frequency occurrence, so very small...
Yes, I find this offensive too, @Mithriel. Its usually a judgement made by middle class people who've had every advantage in life, and the judgment is levelled against people with difficult lives, and few real choices.
This is my experience too at an individual level, @Jonathan Edwards. My CRP levels can be low and I can feel awful, or high and I can feel not bad. So its not the whole story at all. Although when my CRP was really, really high (30+), then it so happens that I have consistently felt absolutely...
Yea, that's seems highish. One paper that did a really reliable assay on a large number of people found that IL6 levels above 4.45 pg/mL were in the 95th percentile.
But maybe just not high enough to raise your CRP substantially?
Sure. I'm weird. Its important to say that. I have a lot of immune type symptoms. Flu-like. Lots of burning glands, headaches, feeling overheated. Very fluctuating pattern. If I overdo activity, I get PEM the next day (an exacerbation of all of the symptoms I just described), but I also get some...
Okay, fair point. And maybe I'm clutching at straws here. But I still worry that "fatigue" is a vague descriptor too, like pain. It might have many causes, that differ widely across people. And even PEM, that we think is so specific, might not be. The reason I think this is that I experience PEM...
@Snow Leopard, that's interesting, and I admit to knowing very little about it.
But what if there is massive, really massive heterogeneity in patients diagnosed with ME? There could be variable cytokine profiles, but also many cases where cytokines aren't at play at all.
What would that...
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