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How is it possible to have a "considerable reduction" is symptom severity without a "clinically relevant improvement of physical health"? It sounds like terrible research that revolves around first introducing bias through "psychoeducation" and then intentionally failing to control for...

It appears the authors are very confused about what CFS is.

I broadly agree with the idea, but not on the specifics of stress hormones and immune system. We're more often the victims of aggression because we can't fight back. The PACE trial was a form of aggression because it attempted to tell a false narrative that would benefit professionals at the...

The problem isn't an inability to be interested in things or people but the difficulty in developing these interests. As person that does not leave the house for long, and usually only once per day, there are certainly fewer opportunities to form interests, but this is not the limiting factor...

I was curious and picked rs9262549 to examine more closely because it had the highest reported difference between cases and controls. I was looking at the table where it is listed in the study. The dbSNP database reported alelle frequencies for the reference of G=0.1915, and the alternate of...

The same mistake was made in a previous study: https://www.medrxiv.org/content/10.1101/2020.10.27.20220939v2.full

I'm skeptical about this for various reasons. The control group was the 1000 Genomes Project, which used different and more reliable technology than 23andme which provided the data for participants. 23andme tends to falsely report rare SNPs in people that do not really have them. Also I...

Great to see these comparison studies. We need more of those. The impression here is that ME/CFS in comparison to SD affects physical activity or muscles more. It's also further evidence that PEM is also seen in other conditions.

So then we should be looking for a biomarker for PEM? I think I can feel when PEM starts in the body. The last time it started just hours after exertion. It's initially barely perceptible but increases over time. If I can feel it, it shouldn't be difficult to find a biomarker.

Exactly. A lot of what could be called psychosocial dysfunction is just a consequence of being physically ill. And I don't mean being depressed because of illness. I mean things like having no opportunities to develop social skills because of physical limitations. I can leave the house and meet...

That this article is so good is mostly because Young is not redefining the experiences of patients (at least not to a degree that leads to clear distortions). Which shows how pervasive a problem this is. If the CBT/GET people were to comment on the article, they would probably attempt to...

I'm thinking specifically about diagnostic tests here. If presumed ME/CFS cohorts also contain some cases of other illnesses that are good "ME/CFS mimics", then it might be impossible to ever devise a diagnostic test that can reach high accuracy, let's say 98%. The maximum possible might be more...

I think this fracturing of personality happened to me, even if I wasn't severely ill. For many years I was just ill enough to fail every time I tried to rebuild my life, and to have difficulty socializing. I was undiagnosed and also had no access to the collective wisdom of other patients, or...

Can you say more about the topic of genuine isolated ME/CFS and patients with other diseases also fulfilling ME/CFS diagnostic criteria? The dominant narrative in the patient community for a long time was that ME/CFS research was slow to make progress because of outdated, bad diagnostic...

I checked a few accounts but got bored. None of them have retweeted. I suspect they will ignore it because it's a powerful pro-patient article. Also 200 more retweets happened in 25 minutes. Really impressive.

This is exploding on twitter. It has 2000 retweets+quote tweets already.

According to that page, they have only completed the preliminary searches.

Just to make things clear I think the conclusion "Plasmapheresis for this indication should not be used outside the context of a well‐conducted randomized controlled trial." is very sensible.

I think the use of "belief" damages the credibility of the review. It comes across as biased and is the kind of language used by people who are secretly thinking that the illness is all in the mind.

People like Natalie cast doubt on these illnesses to justify their own horrible behavior towards patients. Behavior that is presumably driven by negative attitudes towards chronically ill people.