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So basically they couldn't be bothered to slightly alter their protocol to include the 2 day CPET. Talk about effort preference. I guess they have CFS too!

When you think about it, it is really insane the NIH can publish a study where they say the functional disability is caused by deconditioning, yet at the same time claim exercise wouldn't help. Even without knowing anything about the history or context of ME, how could anyone approve this paper?

Isn't this wishful thinking though? Action is a consequence of will. Or should we say, effort follows effort preference... In the past 40 years, the medical establishment has had very little effort preference towards studying and funding ME. Mostly because it was perceived as an issue of the...

Is it a positive message? FND and BPS have never had any issue being internally inconsistent and filled to the brim with hypocrisy and cryptic terms that have different meanings depending on the context. Saying the illness is real and organic, or that nothing is wrong with the patient and...

Those symptoms are psychosomatic and thus not relevant. The only symptom that they considered "real" was this apparent unwillingness to do things, whether it is immune mediated or some brain process gone wrong. They are studying ME like a psych illness.

The difference is that, fundamentally, people with depression do not want to leave the bed. They have no POTS, PEM, and If they are forced to go out and exercise they will feel better almost immediately, and in the following days as well. Doctors prefer to prescribe SSRIs because motivating...

Which might very well be the case, if they selected mild patients that had fatigue after exertion "a little of the time" and had no POTS. This whole study is an insult to the severe patients that can't even feed themselves. "Effort preference" my ass. We need to realize that the whole thing...

But the thing is, long COVID has received over a billion from the NIH and it was completely squandered. So to what extent will money solve our problems, if they just keep wasting it? Wouldn't it be counterproductive if they spent the next 5 years pumping money into useless studies and then...

Then maybe they should have studied severe patients that actually can't physically do things, instead of mild patients that choose not to do them in order to avoid PEM. :banghead:

"You think you can't, but actually you can". Doesn't get more FND/BPS than this.

How is it possible that with those people selecting patients none of them have POTS? Something doesn't add up.

I don't think FND doctors are evil masterminds, they might be genuinely fascinated by this mysterious illness where people say they are tired and decide not to do things even though they clearly can. But when someone is psych minded like this, they see what they want to see and hear what they...

A quarter of patients recovering and no POTS is a huge red flag. This is why you can't let "FND" minded people select patients. 8 years down the drain.

I agree with you, the NIH is clearly taking the piss, with this study but also the long COVID funds they are wasting. I can't see anything good coming out of licking their toes and cheering them on. You're just playing their game.

I don't know what illness this is describing, but it is certainly not mine. I have been ill for decades, never gave up optimism as to what I can do and yet every time I attempt to do anything that isn't rotting in bed I get PERMANENTLY worse from it. If I'm lucky, I get a PEM that lasts for 2...

The reason some patients think LDN is effective is because it can help with neuroinflammation, which can have similar symptoms to ME. It's like if you took probiotics for GI symptoms, they don't treat ME but if you have GI symptoms as a result of ME they may help a bit. I can't see any useful...

There's no way this is true.

Dysfunction of the anterior cingulate cortex (ACC), whose job (part of executive functioning) is to filter out unnecessary information. I have noticed many pwME have this problem, me included. In Younger's RMS study, the part of the brain which showed the most abnormalities was the ACC. I did...

In my opinion, looking at all the features, ME is obviously some kind of immune illness. I think it is obvious doctors have no clue how the immune system really works. We rely on fever to tell us if a person has an infection, we have otherwise no way to know. We can try to detect pathogens or...

I have high IL6 but steroids don't lower it so I'm not sure what else I could try, there is an anti il6 antibody drug but good luck trying that one just from a suspicion of association. But yes I think there is a small subset of ME people that have extreme executive dysfunction and nobody cares...