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Natelson?

I think it easier to write of a triggering event for PEM, than for ME/CFS. Sorry if that's obvious.

This.

You're relatively new. Exertion is exertion. Stress can translate into exertion. Well, let's not exclude "Other". I've a few that can comfortably fit there. Government interference comes to mind.

This could be its own thread. It's ALL about diagnostics. Diagnostics in theory globally would close down psych shops. They would clear up if we've infections at play or massive immune malfunction or another novel issue. They would shut down forever the calumny about our character. Fifty years...

You wrote perfectly. If it matters, I agree with your opinions. I have edited that piece. ;)

Yes. Well said. Remind me how long a half a century is? When should we start getting pissed and discard more cautious language on a wholesale basis? Can't we be circumspect but still say WTF, what we say matters?? Why do I feel like this is the true battleground, and most here would rather...

If we are the good guys, and we only want truth. who doesn't want to understand what motivates them? Avarice? Legacy? State agency? Prejudice? State/government history? Or does it not matter? Does it all boil down to fixing our health?

Right. An impasse. But seriously. This isn't merely Stupid on one half's part. Or natural catch-22's. Someone was/is lying somewhere along the continuum.

You'd need reliably accurate diagnostics to satisfy you, and not only do we not have them, not only have we not had them for the last half century since the advent of widespread ME/CFS and things like the half a dozen or so tick-borne diseases - we remain no closer to having them. We are making...

We are culturally hell-bent on defining most infections as acute - boundaried by symptoms and timeframes and, whenever possible, defined by objectively measured biomarkers or lab results. By the same token, our culture frowns upon chronicity. We look down upon many whose illnesses don't resolve...

Hard to imagine symptoms that are not derived from a sickness or aberrant medical condition.

Yes. You are right. For me, at least, it's a dilemma.

It seems that no matter how you approach this there are assumptions at play. Just to play Devil's Advocate, how would anyone know they didn't have a causal infection/trigger if a) they were asymptomatic for it, and b) the diagnostics were inadequate?

There is so much to unpack here, and it all can be tied back into this presumptive and feel-good IACC genre, but to me this is at best misleading. We already know persistence post abx occurs. It's just that it gets complicated after that. Blood diagnostics vs tissue testing, for example. The...

I'm sorry. Isn't this just a silly fancy way of suggesting that how we feel is incorrect? That we only think we are sick, that a faulty sense of feeling shitty ,and its timing, is merely that: misappropriated perception?? We only feel sick; we really aren't? If there is a pathology, it's in the...

I have a high regard for you, but I think we both know what you're saying here. You have no clue, nor should you. So you shouldn't be trying to discredit their diagnosis.

Sorry, this seems garbled, but it's late for me. Regardless, you hopefully appreciate that those most likely to be seeking medical shortcuts and bullshit explanations are medical professionals? Patients are looking for real sustained solutions. Not sure about heds, I don't study it, but I know...

P Please allow me to make a small but important distinction: In some of these cases we can quite simply state that these people do not have these diseases. In many others that cannot be claimed. And if you are on the receiving end of crap diagnostics, and a lack of meaningful treatments...

"The main issue is that if patients don’t actually have these diseases, the workup is concluded prematurely. They obviously have some explanation for their symptoms, it’s not good to stop at the wrong one and investigate no further" This strikes me as over-the-top optimistic as to what actually...