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One thing I learnt when designing things is never to underestimate how much larger the impact is of something shown passively than something people have to look for. I don’t think there is a doubt that a high traffic app showing this quite openly will have far more impact just because it...

Maybe the calm and lack of background noise helps? I know the sensory nightmare from lots of background noise can severely exacerbate my condition.

I have both wired and tired and poisoned. Poisoned for me is like wired and tired but 10x worse. Like genuinely the worst I’ve ever felt in my entire life. Comes with immense nausea and sweating and reflux and I generally feel allergicky. I also can barely think (while tired and wired my brain...

It’s like basing on social media engagement. (It’s easier to get engagement if you say outrageous stuff)

I haven’t engaged with german coverage much so I think you must be correct but also I think looking deeper the bias from the average journalists gaze would be coming from the structural effect of an explicitly mild conception of the disease (as CFS). This conception usually completely erased...

I assume we can be quite confident this rules out a body wide lack of “energy” in the classical sense. Does it rule out a local effect. Like lack of “energy” to a brain region or lymph nodes or bone marrow or something. Does what I said even make sense?

Useful concept. Just to make sure I understand correctly it basically means “abattu” like almost “beat up”? i think that description is better than fatigue.

I have to say I never had reflux in my life before COVID and after COVID I got extremely debilitating reflux that hasnt gone away. I tried all sorts of medicine and the only thing that sort of helps is max dose PPI and even then its not gone away. This reflux was one of my first symptoms of...

I’m very severe. I’ve been extremely severe in the past. I’ve never really identified with that description tbh. I feel debilitatingly ill. Out of it. But fatigue not really? I have debilitating fatiguability. And I definitely have exhaustion sometimes but its not a constant. I agree with...

I never really understood basing on citations I see a lot of papers cited specifically to critique them. I mean for example PACE must’ve gotten a couple dozen critique citations at minimum.

Persistent Attenuation of Lymphocyte Subsets After Mass SARS-CoV-2 Infection Abstract Objectives Growing evidence suggests that lymphocyte subsets are declined in COVID-19 patients, but it is unclear if these alterations persist after widespread exposure to SARS-CoV-2 or how long they last...

Or just simply add a disclaimer. It’s not that hard. This would all be fine if they had a visible (*smirk*) disclaimer saying they don’t endorse the trials listed and that exist are predatory researchers.

@forestglip archive.today has indexed it https://archive.ph/20251205172903/https://www.washingtonpost.com/health/2025/12/05/full-body-mri-scan-experience/

@Hutan has a great thread that goes through the evidence on cortisol in ME/CFS and it seems findings are inconsistent but not really suggestive of low cortisol. https://www.s4me.info/threads/cortisol-levels-in-me-cfs.41615/

For me it feels like the inbetween state between „lethargy-esque“ PEM and the tired and wired feeling. While resting might help I haven’t found it always helpful as that state makes me feel so awful I can become quite suicidal during it even though I‘m not actively suicidal generally. So what...

I thought this part of the message was disappointingly pseudo-gaslighty and „damage control“ PR. Like if you‘re working with pwME you know that this doesn’t prevent bad trials at all. [BTW these last few posts should be moved to the visible thread]

Is that known?

Me praying Open Source hardware linux phone thats usable as a daily driver will finally happen. (Luckily the chances are Me/cfs will be cured before that :laugh::sob:)

To update on this. The phone having a really slow CPU has actually put me off. I find it harder to use now than a normal phone because it’s really buggy. I still use it to like read epub files but thats about it.

The lingering shadow of epidemics: post-acute sequelae across history Miller, Christine M.; Moen, Janna K.; Iwasaki, Akiko Abstract The SARS-CoV-2 pandemic has drawn global attention to post-acute infection syndromes (PAIS), with millions affected by post-acute sequelae of COVID-19 (PASC, or...