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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...

And what about PEM from taking a bath? It doesn’t require more movement, but the stimuli seems to really mess with every single system.

Maybe the different responses to different types of exertion is something we should try to highlight in a future fact sheet? Idk if there are any studies on it, but it should certainly be included in the next PEM-studies, and probably all exercise studies. I also believe that there might be...

I would be willing to bet that ME/CFS patients need more care from close family than most MS and Parkinson patients. Due to: less help and lower FC. From the Norwegian ME Association (p.37) - time (hours/week) spent being a carer. From the top: very severe; severe; severe - moderate...

Don’t quote me on this, but I believe that there’s only one national fee. I don’t know if it’s distributed based on membership numbers in the regional groups. Btw, the fees are 470 NOK for regular, 270 NOK for 30 years and below, and 270 NOK for low income members (honour system).

@Yann04 you could also argue that if the patients are getting better (i.e. less symptoms), then why change the approach? Why not let them continue what they are currently doing and maybe their baseline will increase over time?

Auto-translated from German. I added some line breaks. What makes “Miracle” special "Miracle" looks where others don't look - for example at the so-called neutrophil granulocytes. These essential defense cells of our immune system are the most common immunocompetent cells, but are extremely...

I imagine Landmark, Wyller, etc. believe that they have discovered how something works. Chasing «I know something» is a slippery slope that requires an ironclad integrity to navigate properly. And you need the wits to know when you don’t know something, as well as an extreme openness to the...

I’m amazed at how many studies you find, remember and understand, @forestglip I don’t have the head to search for things now, but I wonder if eg the MS-field has found anything related to EBV if the nervous system can be attacked by prions? I know MS is caused by autoimmunity, but maybe there...

I fully agree. But they don’t know that, or they refuse to acknowledge it. In principle, yes. But the HIV patients had to riot to get anyone to listen. They had plenty of proof. So I’m pessimistic.

I’ve started just calling it Psycho. That being said, I still believe that we shouldn’t discriminate based on the subject, we should discriminate based on the quality of the proposed research project.

Why? They already have effective treatments (in their opinion). Most politicians don’t care about actually making a difference, they care about being perceived as making a difference. We would need someone like the Bernies Sanders of the US to cut through the bullshit.

I don’t think it should be limited to biomed, that would create undue bias. It should, however, be limited to studies of the highest research standards. That would effectively ban 99.9% of current BPS and biomed researchers. I hope virtually unlimited funding would entice some good researchers...