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My memory might be letting me down but I think this was a few years ago, before the current study. Something about people with just one gene mutation of the three tended to be milder but in combination of more than one relevant mutations they had more severe ME.

Experientially ME feels autoimmune to me. For example, when my body switches to fighting a new virus I get an unusual brainfog holiday just before the virus symptoms. My brainfog fluctuates a lot, but it is a noticeable pattern. This could well be an entirely flawed perception but my...

I remember Nancy Klimas talking about 3 genes a few years ago, but that must have not been confirmed as we didn’t hear anything more.

My vote is it will be a pattern or collection of tests. If it was one gene I suspect it would have been found already. So interaction of several SNPs in slightly different possible configurations, microbiome testing, autoantibodies/immunosignature forming a bigger picture? The exception is...

Not necessarily. I’m thinking of the Hornig study “We report here distinct alterations in plasma immune signatures early in the course of ME/CFS (n = 52) relative to healthy controls (n = 348) that are not present in subjects with longer duration of illness (n = 246). Analyses based on disease...

I saw it on Twitter from Micheal van Elzakker in this context, but when I asked him he just said google Debate Pyramid and it was there lots of times in the search result.

Oh that’s actually a lot more positive than I had interpreted from the news. I’d consider being able to treat a third of pwme (or people previously misdiagnosed) a substantial advance. It gets better if you can know before treatment who will respond. Though I respect the lack of spin. I...

I’ve woken up thinking about this (well I woke due to throat constriction and I’m now dwelling on it). It’s really winded me. Yes my partner’s response was that if it wasn’t that it made people worse (thinking of something like GET ;)) it could still be worth trying. It’s just now a very...

This is a useful guide both ways. We need to stick to the top 3 layers. Noticeable that the level of debate back is far lower ;)

@MErmaid my dog looks at me like I’ve no idea what I’m doing! Bet she’s longing to recommend something! Probably daily walks ;) I think this issue is more the lack of social skills in how people suggest stuff. Sometimes I’ve seen noticeable improvement after starting a supplement or similar. As...

@Kalliope 20 years for me this winter. And it was the first thing that seemed plausible to me too :( I’m in the process of getting my whole genome analysis. Might pin my provisional hopes of a healthy future on ME being a misdiagnosis and having something treatable instead ;)

I think we need to allow ourselves to feel the disappointment but this quote in the Invest in ME response is one to remember One day the research will get there but ok to :cry: today because it isn’t imminent Re different phases: Do we think there’s a placebo/demand characteristic type thing...

Perhaps a Prime Minister will give an official apology in 2135? ;) I think we need to be more cautious on this issue. It looks bad to the general public if she is receiving hate mail and we simply refuse to believe it (it looks like we’re brushing it under the carpet, even if there’s no dirt to...

Thanks for sharing. I’m in the process of getting my whole genome done

Oh dear. Hope for this as future treatment had been keeping going in the back of my mind too (I don’t mean in a dramatic way, I’m upset not suicidal). But potential treatment around the corner takes away the dread of unrelenting crap ness. Literally :cry: We should probably keep an eye out for...

Should we therefore conclude that the FOI included errors? The University says it is aware of harassment.

The cognitive stress thing makes sense to me. When I was well enough to think it was achievable, choosing items standing in a supermarket with ME and POTS was terrible. Also things combining fine motor control and concentration I now find really draining (eg sewing machine).

My reading isn’t great right now but I’m intrigued by the ventrolateral periaqueductal grey matter bit in Aetiology Why is this in there? Do they think this can be a cause of movement problems? I’m Curious because I’m investigating my own movement problems. These certainly don’t come on due to...

Surely it’s just not a viable test for many pwme? Not just thinking of @Dechi style of experience, but people who are already too ill to even choose to risk it. It’s useful in the occasional research study to evidence the nature of biological abnormalities, but should we be reluctant to accept...

I answered relapsing remitting, though for me a bit confused with having undiagnosed POTS for years and potentially another condition as well. It hasn’t been a linear progression or improvement and neither worst (bedbound) or best (able to work full time hours) phases were at the beginning or...