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You may be right. I know you are. I'm not sure that's quite accurate. Nice thought, though. To a lot of people. Others, not so much. Agreed.

True, but I think that's where we need to be looking. Looking for a smoking gun the same way with the same methods hasn't been working out so well. Even with post-mortem efforts, I'm concerned how and what they'd look for. At least in post-mortem investigations, though, patients efforts can't...

"Their brain is telling them, 'no, don't do it, " says Nath. It's not a voluntary phenomenon." "This is a novel observation, says Komaroff, demonstrating that a brain abnormality makes it harder for those with ME/CFS to exert themselves physically or mentally." A brain abnormality of volition...

I think it does show something. I think the "effort" process demonstrates an unfortunate bias embedded in the study. I cannot figure out what it was included. Do you see this in cancer research? I think it should not have been there. I am offended by its presence. I think the patient community...

Do we know who from the NIH that was involved in the ME/CFS study will be involved in the LC effort besides Nath and Walitt? I worry about a research template of sorts being passed down. There is also the Lyme group. And isn't there a new overarching group that looks at several diseases in tandem?

Odd. To me it sounds awfully like he is clueless, indifferent, or part of the problem.

Didn't they have ME/CFS researchers advising them? There should be a response from that group. There also should be a coordinated response from every ME advocacy organization condemning this Russian Doll "effort" drivel embedded within what was advertised to be a serious and dedicated ME/CFS study.

It's not just fatigue or weakness. ME/CFS includes other feelings of sickness. Balance, poisoned sensation, pain, dizziness - this study seems to gloss over these. Others like cognitive decline, it seems to dismiss or discount. PEM appears MIA. Overall this study seems a gross...

I cannot decide whether this study is a Fool or a Tool.

With no less than the NIH imprimatur. Years of progress against BPS trash potentially undone. If so, unforgivable.

Agreed. Or bacteria as in your later post (and the mino and Vit D you referenced.) The thing is, there is conflicting evidence sometimes. Sometimes, too, none of the evidence on either side is really compelling. It becomes more of a camp thing. Cliques from which beliefs and even studies are...

I have seen so many failed attempts. I've also seen a few successes that didn't stick. I'd want real granular specifics before I'd participate.

The problem I have with all of this is it sounds too grand, too sweeping. If you only dealt with one third of the proposed triumvirate it would represent an enormous undertaking. Huge. We're talking proving or disproving persistence. If successful, it would be virtually unprecedented as a game...

Simple. If you get there, give me a call.

I hear you. Alternatively, there are people like me who view both their use in medicine as lazy. :) Yes. This is even more of a dilemma, for lack of a better word, where contested diseases are involved, and where inertia, indifference and even hostility characterize the better part on the...

A doctor told me I had CFS and forbade me from having any labs done. His office staff always referred to my fatigue and tiredness, as did he - although I never used the word tired to describe how I felt.He put me on an SSRI. Doctors, and yes, researchers, misuse their own language. It can be a...

Terms of art? Cool!

I cannot speak for the UK or any other part of the world for that matter, but I feel fairly comfortable predicting that in much of the US, if a patient walked into a clinic and pronounced "I am suffering from malaise" to most any medical professional, they'd likely be put on SSRIs or referred to...

Do you think, even for a moment, that malaise is any less onerous and injurious to the patient community than fatigue? Any less colloquial and laden with cultural baggage? And malaise is not? If you are searching for science speak, you'll not find it there. Science may be able to rise above...

Would malaise work better for you? As a scientific term?