Discussion in 'General ME/CFS news' started by Sly Saint, Sep 1, 2021.
rest of article here
That's a lot like asking whether we will one day build machines that can fly before they were built. If you want results you have to do the work. The work hasn't been done, hence no results. Begin the work and results will be the outcome, this is a simple process, it literally always works out the same way:
Do the work: long, boring, works, cures sick people
Don't do the work: long, boring, doesn't work, leaves sick people worse off
Same algorithm with literally everything, the same process plays out with climate change. Will we reach 100% renewable energy? Sure, once people decide to do this. But fossil fuels continue to be subsidized by the billions, so it's not happening, because the effort hasn't reached escape velocity. Those subsidies play roughly the same role as the continued funding and propping up of psychosomatic ideology: more efforts invested in obstructing than solving on the problem.
Quit stalling and get to work, damnit.
That sounds difficult and expensive. Isn't it easier and more cost effective to listen to the experts who say that we can achieve flight if we just stop fearing gravity and try to jump a little higher each day?
The only difficulty is that there is a difference between ‘costing less’ and being more ‘cost effective’. It would certainly ‘cost less’ to develop your flying programme by will power and graded jumping programmes, indeed I have spent very little on my thirty year yogic levitation programme regularly practicing standing on one leg, which has so far got me 50% of the way there at just the cost of replacing some China ornaments from the mantle shelf.
The alternative of developing an aeronautical engineering solution costs substantially more, but because it actually will achieve flying which the graded jumping can never do means the substantially more expensive engineering approach could simultaneously be regarded as being infinitely more cost effective.
To paraphrase Jemaine Clement of Flight of the Conchords... "That's why I said 'Isn't it...?"
I know this technique for measuring PEM has been discussed before, but I am still somewhat skeptical that "gentle compressions" can induce "mild" PEM. The procedure may be altering microRNAs in some way, but how do they know that these changes are related to "a milder form of PEM?" Perhaps I need to re-read the paper.
My main question, however, is why not enlist a fairly large group of localized ME patients and give them a number to call when they are certain they are experiencing full blown PEM? Someone could then be sent to their location to collect blood. PEM goes on for hours, if not days, so getting a blood sample during the experience should not be that difficult. To get a control sample from the same person, have them call for another blood draw when they feel that their PEM has abated.
I appreciate that the researchers did not want to harm the patients by inducing full blown PEM, but, in a large enough group, some patients are going to come down with full blown PEM on their own.
There may be arguments against this, though. Perhaps too much goes wrong in the blood during full blown PEM, so there's no way to untangle what it all means. Seeing the consequences of a mild form might make it easier to deduce cause and effect.
Just some thoughts...
Any discussion/report that discusses biomarkers/tests that doesn't explicitly discuss sensitivity and specificity suggests they don't know what they are talking about.
They don't know. It's funny how anything measured is assumed to be pathogenic, rather than merely an adaptive response, or something due to random chance.
I know that blood glucose goes up when in PEM, even fairly mild PEM - of course being diabetic this info is of no use to anyone as who's to say why it happens, it could be a whole host of things that are related to PEM in my case.
I am fairly sure that almost every (non-random) finding so far is from the body having to deal with and adapt to the underlying primary pathology, not the primary pathology itself. Which is fine for clues, including for possible (non-curative) treatments.
But they are not explanatory.
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