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Not surprising if it wasn't replicated, but we also shouldn't rely on a single team who might diagnose the wrong patients or mess something else up

I'm not sure why our organizations haven't mobilitated to set up a large CPET study. I get it that it's invasive but if it's potentially the start of a revolution I'm pretty sure you could easily find 200-300 patients who are willing. That's the bare minimum required for doctors to start taking...

I haven't made peace, I've tried so many things tests and treatments wise. More than 99% of patients probably. But now I have no energy to try anything else (and I kinda ran out of options treatments wise) and no energy to be upset about it.

I really hope that it's some obscure immune dysfunction causing the illness (which GWAS might help find), because if it's really just a chronic infection we could have found 40 years ago by looking at tissue, I don't think I would be able to cope losing my entire life because of that.

I have had surgery complications recently that forced me to stay in bed completely horizontal 24/7 for months, after about a month I was starting to feel the deconditioning as extra fatigue and weakness - but it is maybe, 0.1% compared to my ME symptoms? And you can, you know, just walk a bit in...

Scheibenbogen is doing the correct thing trying immune drugs, but we would need 10 Scheibenbogens to have a realistic hope of getting treatments from there. We need to be relentlessly trying all sorts of immune drugs (because we are stabbing in the dark), not just one or two every once in a...

I think analyzing the whole genome of severe ME patients to fish for rare genetic illnesses that can cause ME is a worthwhile thing to do. It's the inverse approach to GWAS. As far as I know not a single case of ME had the cause identified this way - however with other illnesses it certainly did...

Interesting, where I live (Italy) seems to be an outlier then. We have zero funds for ME research here. There are, very occasionally, studies made with leftovers funds by some researchers but nothing worth mentioning. If millions were allocated to ME research here, I don't think anybody would be...

Another way to say it would be this: There is a lack of attention to detail in medicine. Is it because of psychosomatics, or are the psychosomatics a consequence of this embedded and widespread lack of attention to detail?

For those that even know ME/CFS exists, sure, but did they get to that belief through conviction or simply because if you can't figure something out in medicine it's standard to say psychosomatic? I have seen so many doctors that in the end mentioned a possibility of a psychosomatic disorder but...

Aside from decodeME, which I think is a really promising study, there is no rational reason to think otherwise. When 99.9% of the scientific community is completely unaware of ME or thinks of it as a non issue, you can't really expect any progress to happen. We have seen that with long COVID...

But there is no evidence of this, and most importantly no evidence that your counseling is anything more than a resource sink.

Interesting that the whole psychosomatic/catastrophism theory basically starts with the premise that you don't do things even if you could, and when you find evidence of the opposite (patients desperately trying to do a lot of things in a short time to catch up on life when they feel better) it...

A "good day" is me trying to learn something while laying in bed, feeling like I have done an intense full body workout from doing 0.1% of the cognitive exertion a normal person makes in a normal day of school, and then being completely bedbound and feeling poisoned for many days or weeks -...

There are so many doctors who think CFS is vague fatigue symptoms associated with not being disciplined enough in life. Not necessarily psychosomatic, just related to lifestyle. Like someone who gets obese by eating junk food. The thing is, in medicine doctors are not taught the scientific...

Where I live, nobody has discouraged anyone from engaging with patient orgs and yet our advocacy is still 20 times worse than what you have in the UK. Not saying you are wrong, just wanted to provide this fact.

I think our advocacy needs to be overhauled from the ground up. Lone patients telling people they know about the illness will get us nowhere. We need a big numbers approach.

Yes, that's the point. Even if you have a psychologist or psychiatrist certify that your illness isn't mental (even more than one), they will say that they suck and you need to find a better one. This is straight corruption in medicine, there is no way around it. If the system wasn't rotten to...

So we literally can't even get their attention? How disappointing...

While we are talking about this, I want to ask you something. As you have implied in your post, the most capable, science oriented psychiatrists do not think ME or fatigue is a mental illness. This is obvious, otherwise we would have phase 3 trials with psych drugs all over the place. The only...