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I’m sorry that you’ve gotten worse. I have long covid with PEM and I am about to be diagnosed with ME/CFS if the blood work checks out. I pushed (because of gaslighting), and I got way worse. That’s very normal. So if you have PEM, you should really respect it.

I thought it was the opposite? I have a vague memory of a graph that showed an increase in ME/CFS funding, but no change in Lyme or Fibro. This is not that graph, but it shows projects in Germany and Austria. They are probably the best case. https://mecfs-research.org/en/researchupdate/

This is what people need to know: there is such a massive prize here, if only we can have an honest, adult conversation about the full range of things that drive illness, and then take appropriate action to make it better.” Oh, the irony.

I echo @Sasha here. I’ve got donations left this year and I’d love to give directly to a good project. The Norwegian MEA has a research fund that I will donate to if that doesn’t happen. They are the only ones I trust to put the money to good use.

I’m out of the loop here. Can you explain what DecodeME needs the money for? Are they not fully funded?

Blatant lie.

I may be wrong as well, but it seems like ED isn’t defined as «exhaustion after exercise». The dogma is that exercise is good for nearly every mental health and fatigue disorder, so they wanted to check how ED-patients would respond to it.

That’s most of medical and BPS science.

@rvallee we have the same thing in Norway. Pathetic.

I agree, but the LC researchers are trying to solve all adverse effects of Covid-19, which means that they have to solve ME/CFS. I should have been clearer on that.

I have skimmed some parts. It seems like they have done a decent job. It’s still open-label and subjective outcomes, but it doesn’t seem like they go beyond the evidence, and they put weight on the experiences of the patients.

Exclusion criteria for all participants were: (1) ME/CFS, (2) chronic pain disorder, (3) recent post-covid, (4) current suicide risk, (5) current drug use or addiction, (6) current or previous bipolar disorder, (7) current or previous psychosis disorder, (8) untreated hypothyroidism, (9) blood...

She has around the clock care and can avoid PEM. She’s probably also lucky. She might have responded to some treatments, but that’s just speculation and n=1. Suffering and effort isn’t enough for most people, you need to be in the right circumstances as well.

Metal is probably lighter if that’s a concern. I don’t have any links, though.

They could have concluded that the evidence for CBT is very weak due to the lack of blinding and subjetive outcomes. We don’t know this yet. Rehab, rehab, rehab..

If there is no effect in a pilot, there’s no reason to do a larger trial. The bias of smaller trials will usually lead to an artificially larger and positive effect. It’s highly unlikely to get a false negative.

I’m leaning more towards Sean here. Mostly because LC is becoming such a massive problem that it will be impossible to ignore at some point. The politicians are really trying their best to not take action, but LC has to be solved eventually. That will benefit ME/CFS, because you can’t solve LC...

This makes me believe that they’ve never encountered a severe or even moderate patient. If they have, there’s no excuse for this paper.

Fair point. But what about access to care? That’s notoriously difficult for ME/CFS-patients. My intended point was about close family’s ability to work while they take care of the patient. I get no help, I’m bedbound. My parents have to do everything. My uncle has very severe MS, he has...