Search results

It is worth noting that lack of pleasure can be associated with apathy in neurological illnesses (ME included) that have nothing to do with depression. Feeling down can also happen (especially when you can see doctors don't understand your problem and can't help) without you having depression...

These drugs have already been tried by so many patients for decades. What reason is there for not going straight to a blinded trial? Are they trying to milk unsophisticated investors?

One quarter? More like 90% at least.

When you think about it, malingering gives you such a poor return on investment that if you choose to go through all the trouble and manage to obtain disability for it, chances are you have an undiagnosed mental illness (which you would likely get disability for anyway) or, ironically, an...

That's what I meant, when patients exert themselves in a way that leads to a crash days after, they need to measure not just the crash but also what happens in the previous day(s). We need to have all the data without underlying assumptions.

PEM clearly has two stages, the one during and right after exertion and the crash that happens a day after. Any study with PEM should investigate both.

How do we plan on identifying the pathogen if all previous methods have failed?

You have to be really dumb as a malingerer to choose ME, nobody will ever give you disability or any of the secondary benefits you are looking for. Even if it's "subconscious", you would realize it easily. If you were "subconsciously" trying to get fat, you wouldn't stuff yourself with...

The thing about neurology is in papers they clearly write a large subset of patients with neurological illnesses can be negative in the tests and imaging. In conferences, they talk about how even in the positive patients there is microscopic damage and dysfunction that the imaging doesn't see...

This is missing the point. If you are a patient with depression, anxiety or autism, you will find that psychiatrists tend to listen to you and your experiences. Sometimes what you say might be discredited because that's what doctors do in general, and because if you are mentally ill there are...

Off topic but out of curiosity, roughly how many people did you see during your practice that most definitely had ME?

How does PTSD relate to posture? I don't get it. Plenty of people have PTSD nowadays and none of them have this posture problem as far as I can tell? Is it because soldiers were often ducking in the trenches?

Do we have a comprehensive list of these somewhere? Should probably add it there. How nice would it be to have a mega class action lawsuit against doctors for the harm they've caused patients through psychologizing illness? Don't know how realistic it is though.

Honestly, I doubt it. I've noticed over the years patient organizations tend to have this "submissive" vibe where they just assume the researchers know best and never to question anything. They just socialize with each other and raise money for research, I guess. ME patients had to learn the...

The vultures are at it again.

What a load of bullshit. The condition is too complex to be studied with GWAS, really? But psychologists telling you to think happy thoughts and ignore your symptoms, those are fine eh? And those unblinded clinical trials with unlikely drugs and subjective measures, those are fine too. What a...

If you have an underlying immune deficiency with chronic or recurrent bacterial infections, and you also have ME, it's likely that treating that would make you feel less fatigued. But you are not treating ME, you are treating a separate process that just so happened to make your ME symptoms...

I don't think it's correct to say that either, because they tend to only work once, if they work. There has to be a specific reason for that.

I mean, for every ME patient that goes into remission from those antibiotics (I tried all of those in the protocol and more, 0 benefit) there's a hundred that don't. We've been trying this stuff for 30 years. It's a lottery ticket that's probably worth trying if you are desperate enough (taking...

That would be an even more compelling reason to keep working on it. A biomarker that could differentiate unspecified illness from controls would be a huge deal in medicine for a number of reasons. Even people with MS can get misdiagnosed with FND initially, just to make an example - so finding...