The severely ill…..They are the most baffling, disturbing and potentially illuminating subset of ME/CFS patients found.
It’s hard to even read some of their stories. Their degree of debilitation can be mind-boggling. At their worst they can be totally bedbound, shuttered in darkness and almost completely removed from the world. The smallest stimulus can send them into a relapse. It’s as if their nervous systems have collapsed on themselves.
The medical profession rarely encounters such complete debility. Consider that people in the last stage of heart failure can get around better than many of the most severely ill patients.
How formerly healthy and productive people ended up like this is a complete mystery. No findings in ME/CFS can explain this kind of debilitation.
It’s time someone tried.
They’re too weak to see doctors and most doctors will not make house calls. They’re far beyond the help of primary doctors anyway. They need ME/CFS experts and even with them there are no guarantees, no protocols on fixing this kind of damage. They’re basically at the mercy of whatever process is eating away at them.
They’re the most difficult patients to find and to study. Most can’t go to hospitals. They can’t go to labs. Everything – testing equipment, researchers, doctors – has to come to them.
They’re maybe also chronic fatigue syndrome’s lodestone. Lodestones are stones with magnetic minerals that sailors used for hundreds of years to find their way. These severely ill patients may be ME/CFS’s true north.
Their very debility makes them valuable. ME/CFS, after all, has almost completely taken over. It’s signal is burning brighter in them than anyone else.
They’ve never gotten into research studies, though. Their signal, as bright as it is, is still obscured. They are mysteries waiting to be probed.
ME/CFS research is moving forward. Much of it, however, is like the guy who lost his car keys who’s searching under the streetlight because that’s the only place he can see. We’re searching where we know and we’re making progress, but the key probably lies elsewhere. It almost has to. Nothing thus far, after all, can even remotely explain how to turn a healthy active individual into a bed bound shell of themselves. We need to look everywhere we can at least once.
My guess is that when we look in the right place the key to ME/CFS is going to light up like a candelabra. Crippled genes, broken cells, bizarre proteins, hidden infections – they’re there waiting to be found.
When they are it’ll be the biggest moment in ME/CFS history.
And the Least Shall Be First
The Open Medicine Foundation’s ME/CFS Severely Ill Big Data Study proposes to go on a massive search for the molecular core of this disease in the most severely ill of us.
There’s something very right about employing the severely ill. When this massive project is done, the most invisible group of this invisible illness will be better known than any other.
It won’t come cheap though. About twenty-five thousand dollars of tests per patient will get you virtually every molecular test* under the sun.
What will illuminating the darkest corners of ME/CFS – the severely ill – show us? Nobody knows. There are no certainties, there never are – but it could show us the way home. It’s the kind of bold project we need. It urgently needs funding.
Support the Severely Ill Big Data Study Project here.
Find out more about it here.
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*Mitchondrial DNA, exome DNA, cell-free RNA and DNA, DNA methylation of all immune cells, metabolomics, proteomics, gene expression, individual immune cell analysis, KIR and HLA DNA analysis, flow cytometry, pathogens, fungi, heavy metals, toxins in the blood, sweat, saliva, tears and fecal analysis and more.
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