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Same here, literally like a switch. I have no idea why Nath is making these reckless statements scaring people. The whole “problem” with ME/CFS diagnosis is that there’s no obvious damage you can point to, hence why most think we’re faking it.

Absolutely. To us it seems easy to diagnose this but the average doctor out there is clueless and quite often hostile.

Definitely. No one starts off talking about cancer by saying it’s real. They only say that about things they regard as not real or at the very least “less than”.

I know that the title of the article is really annoying given that we know this has been the dominant paradigm since at least Incline Village if not earlier. However, it's possible that the authors now perceive that the ground is shifting and feel like they're now the beleaguered minority...

Same here, except I've had even higher titres (1:640) during serious relapses. I don't understand why no one is pursuing this angle.

We engage in these practices for no reason, no reason at all. Just decided one morning, fuck it, I’m going to spend the rest of my life in my bedroom with the curtains closed.

Just stumbled on this. After the primary outcome at 52 weeks showed no difference between the groups, they’ve since published a paper showing there was a difference at 6 months. I should note that seizure frequency, while a more objective outcome than various self-report questionnaires, were...

Exactly. This strategy of trying to dissociate themselves from us (lepers) is not going to work. The numbers affected are huge, the financial implications would be gargantuan.

Same. I remember with horror school trips to various sports activities etc. after which I'd be floored the next day whereas no one else in class was. It wasn't PEM though. At the time it was just DOMS without flu-like malaise or orthostatic issues. I feel like I've been predisposed to developing...

Harrowing article. I hoped long Covid would serve as an impetus for change but nothing has changed. What comes across clearly in these anecdotes is how you instantly lose all credibility as a person once you report fatigue and brain fog symptoms.

The word willing is doing a lot of heavy lifting in that sentence. Unwilling due to moral failure or because they knew, based on experience, that exercise would fuck them up?

So true.

There’s no cure for whatever is ailing the 90 yo lady, and it’s not considered a self-inflicted issue, so they treat with compassion. Whereas with ME/CFS, they think they know that the cure to malnutrition is graded eating therapy.

The entire system is geared toward encouraging fraud. You can't publish "negative" results in top journals. If you don't publish in good journals, you can't get grants or tenure.

I received postal spam for years from Columbia U after donating to one of those Lipkin projects. So wasteful, sending post abroad when they could just email their spam.

New nightmare fuel.

No control group, huge amount of dropouts not counted as nonresponders, subjective outcome measure, no blinding... the usual BPS shit sandwich.

This analysis deviates from the intention to treat principle. They ignore the huge % of dropouts/missing data and use denominators of just those who completed the follow ups.

I wonder if anyone in the depression community is going to campaign for retraction or at least a corrigendum. This is as shocking as PACE but it affects many more people because depression is vastly more common than ME/CFS.

Ah I see. To be honest, the limited dataset that’s out there already following FOIA victory is enough to establish that the treatments don’t work.