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Berlin Buyers Club has some pretty cool stickers and posters. (It’s more axed on long COVID but includes ME/CFS as well) some examples of stickers You can either buy the printed stickers from them (really cheap for something by a small cooperative) or download the designs online for free...

It really seems to me like if an illness has high “failure to cope” according to them, it just means society has a high “failure to accomodate”. (Of course, some illnesses are impossible to cope with no matter how much accomodation. But even me in a perfect world think I could cope okay with...

I’m actually pretty shocked at how prejudiced this diagnosis is. It’s a very individualistic neoliberal assumption that completely ignores disability or societal factors and assume whenever the patient can’t “be normal” or “do normal stuff”, it’s an individual failure to cope.

If I was a funder, and if (this is a big if) I was funding research with the goal of advancing societal knowledge about something (instead of, you know, legitimising my actions through dodgy research agreeing with me) I would require every study I fund to open source anonymysed version of the...

I don’t necessarily have a problem with calling out a nation for producing bad research. But agree that it’s a little dubious given honestly Japan seems at worst average. You see very little BPS studies coming from there comparatively to western europe. Mainly low quality biomedical. But less...

I mostly stopped when they changed the API so that you’re basically forced to use their add filled, junky mobile app. I had a period when I started again when I discovered the cfs and covidlonghaulers space but after a while decided my time was better spent on S4ME. Edit: Incase useful for...

The arguments don’t matter. They are exerting power to get the results they want.

oh sorry i thought it was a general disability scale for government or something

edited

A press release from the research group says this (translated): https://www.ncnp.go.jp/topics/detail.php?@uid=3rwyGfErGEkjguFa (Shared by my Japanese partner, could never have found this myself) Seems a dubious argument.

I don’t think it’s necessarily top heavy. It’s just massively oversimplified. And really isn’t suited to show nuanced QOL changes. 9 is bedridden (v severe) 8 is probably most housebound people (severe-moderate?) 7 sounds like moderate-mild ME/CFS 6 is probably most mild people

I’m not sure what the point of doing a Rituximab trial is given the big one found null results. But lots of the secondary outcomes look real interesting.

I can’t cease to be baffled how many researchers get funding to conduct research on a condition they can’t even get the most basic facts right about. (To be fair, there’s a lot of misinformation running around, but you’re a researcher, it’s literally part of your job to be able to see if...

The SFN null results (or higher rate in controls) is even more striking given that the controls were well age and gender matched. Though to be fair, n=10 for HC leaves a lot of room for randomness to fuzzy up the results. (Although I’m questioning how 38% of HC could have had SFN, given there...