Search results

The problem is that these aren't really markers for ME/CFS, and in mild patients (who tend to go into these trials), there may be no difference in step counts or wages.

Well the problem we have is [1] patients are dying from malnutrition and [2] patients are recovering from doing things like "brain retraining". So I don't think it's good to just do nothing. There are many aspects of these therapies that aren't problematic, and which seem to help patients. So...

Yes, good point. It had a statistically significant reduction in fatigue, but not physical function, and it wasn't maintained at follow-up. I'm not sure how they "disappeared" it, if it was published in the BMJ: https://www.bmj.com/content/bmj/340/bmj.c1777.full.pdf It seems ridiculous to...

My goal is to help patients. What the PACE trial and the FITNET trial showed in long-term follow-up was that usual care eventually caught up with the treatment group, but much more slowly. I agree that subjective outcomes are not ideal and introduce bias. The Wechsler trial is interesting...

Yes, it's the doctors and scientists who are to blame. It wasn't me who called the patients gullible BTW. Calling patients gullible is a terrible thing to say.

Yes, I'm aware. I think it's just important to be accurate in claims. The improvements were maintained at followup, and the control groups increased as well. There was no decrease in scores after the trial for CBT and GET.

The reason I bring it up is because it's a major problem. There is a very famous youtuber who has just had a dubious mito test from Germany. Patients keep getting hoodwinked by this stuff.

Tuha, I completely agree with everything you say. You seem to be assuming I'm saying something that I'm not. I'm very familiar with ME/CFS, and I listen to patients. However, if you listen to patients you will see that psychological factors are important for many. This doesn't mean they're...

Actually there are multiple studies, as has been pointed out. I think what you mean is that you don't agree they are high enough quality.

It's frankly insulting and ridiculous to equate psychology with astrology and astrology and Scientology.

It's certainly understandable, but very unhelpful in a number of ways.

But it didn't. It showed statistically significant improvements for CBT and GET.

NICE downgraded the evidence due to indirectness (not requiring PEM). It wasn't due to the quality of the evidence itself.

No, I'm not. They are two different criteria, and research uses them both. I agree with your points about ICC. All the criteria are somewhat subjective. Cognitive dysfunction is entirely subjective when diagnosed.

Yes, I'm familiar with the arguments.

Yes, attacking crap science is understandable and laudable. It was more calling people "gullible" if they get suckered into believing their mitochondria are broken after doing a dubious test, saying that stress is purely emotional, or that if someone has a stress related illness it's their own...

And yet there are patients who manage to recover from that state using psychosocial tools. It's an assumption to say it "can't get to what's actually causing ME/CFS, and we're in such urgent need of disease-modifying drugs". There are two possibilities: either these patients recovered naturally...

Some examples: no mention of stress as a precipitating factor. Saying that graded exercise has been "not shown to help", then talking about surveys. Similar for CBT. That isn't an accurate portrayal of the evidence.

It started in 2006. Klimas is one of the authors of ICC, which was published in 2011.

But there is definitely an aversion (and/or misunderstandings) to psychology, not simply related to rigour, and that is pretty clear.