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@Creekside I understand what you’re saying, but I never meant to say every PEM bout leads to permanent worsening. But a common theme in people’s experiences is that some severe or prolonged ones do. The large majority of moderate and severe people seem not to have started out in that state, but...

Does that matter if there was little to no improvement in functionality or symptoms?

Sorry to hear that. It seems to really be a trend these days to say trauma causes physical illness. My partner was reading a book she told me about, which touched on trauma, and it seemed really interesting, then we got to an ME/CFS chapter, and the book basically said trauma causes ME/CFS...

Yeah. The only issue I have of the use trauma in our case is it seems to come with the connotation that it leads to irrational behaviour. I believe pwME being absused by the medical system, then avoiding this system, is perfectly rational. And the only way for the system to make up an excuse...

I’m guessing this study tells us absolutely nothing because they used anxiety and depression questionnaires that have ME symptoms?

Yes. For an organisation that’s mission includes open data sharing, you’d have expected them to be a little more data sharing outside their research network too.

I get what you’re saying but it should be a priority to share all the data we have, even negative. No need to be like Al-Aly who consistently publishes in prestigious journals, but it shouldn’t be hard to get a grad student (who will often jump at the opportunity) to write something up to...

So for you GET would help? Like the more you do something the easier it gets? So if you push yourself a bit you get symptoms but then you have the ability to push yourself further? I got PEM once from riding a bike 10km. Have been bedridden ever since.

Because the majority of donations to Ron’s Lab seem to go towards expensive equipment. Do we have a guarantee that equipment will keep on being used for ME research in the next decade, that’s what I wonder.

Thanks for this thread. I never realised she was problematic until checking it out. Have unfollowed her.

It’s the fact that if you do more than you currently are doing not only will your symptoms worsen, but the threshold for your symptoms worsening will continue to lower.

They can’t be serious this would be hilarious if it weren’t so depressing.

Probably WE&ME since they seem to be good at making an impact and they are close to me geographically. Plus they are a charity that seems to consistently produce very Severe ME informed research and advocacy. I’m kind of intrigued by donating to Ron Davis’s lab, but he’s obviously ageing a lot...

Worth noting that nominee for Secretary of Health, RFK Jr, is a supporter of these “therapies”, despite them underperforming RCTs, and claims that they have been “unfairly dismissed” by the FDA.

Yes Solve ME seems to do stuff like this. They also hire annual lobbyists to the US government. I think they are the most institutionalised and therefore connected ME charity to the government/NIH. Although they have (I think) funded dodgy studies in the recent past, the “stem cell therapy” for...

@forestglip this might interest you. You were talking about plans for a machine learning model to predict PEM based on facial expressions if I remember correctly.

Excellent post. It really highlights how little basic biomedical funding there is for ME, while still showcasing some fascinating studies we will get results from in the coming years. To see the whole of basic biological research summarised well in such a short article, really highlights the...

It feels like in practice peer review serves more as an enforcement of “bias” and pet theories of the current group of “experts” than it does to ensure quality.

And Chronic Fatigue syndrome was defined as long term unexplained fatigue 20 years ago. That doesn’t mean it was an accurate definition, or that it fully encompassed patient’s experiences. But for example what I’m saying here is that me, and a lot of others I’ve talked to, our disability is...

To me, PEM is far from only a worsening of symptoms. PEM feels like a worsening of the underlying disease, and importantly, when in PEM, my threshold for triggering more PEM is lower. This lowering of the threshold is what’s keeping me from doing stuff I do when not in PEM, not the increased...