• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Aperiomics: pathogen detection via next generation sequencing

Cheesus

Senior Member
Messages
1,292
Location
UK
I had a highly atypical onset to my ME and continue to have atypical symptoms. Whilst I am confident I share a common endpoint with most of you, I feel that my condition is sufficiently distinct that I might have a unique aetiology.

The recent paper from Hornig and Lipkin concluded:

The deficits identified here in CNS interleukin 1 signaling among subjects with atypical presentations of ME/CFS, along with our finding of strong associations of very low levels of two inflammatory mediators with the atypical phenotype, suggest the potential value of vigorous pursuit of alternate, nonimmune mechanisms of pathogenesis in more complex, atypical patients with ME/CFS. Careful attention to exposure histories preceding onset of illness and longitudinal surveillance for the development of unusual medical comorbidities may help to identify novel pathways underlying dysfunction in this highly debilitated patient population.


http://www.nature.com/tp/journal/v7/n4/full/tp201744a.html

Specifically, my condition deteriorated from chronic ill health to diagnosable ME when I had "die off" from the herbal antimicrobial oil of oregano, which has always made me suspicious that I may have a microbial aetiology. I have always wanted to thoroughly test for possible microbes, but the NHS is useless at investigating atypical chronic conditions. Hornig and Lipkin's new paper has given me fresh motivation to pursue this line of investigation myself, because if I don't then no one will.

I have recently discovered Aperiomics, which is a company that offers next generation sequencing (NGS) for infectious diseases. The advantage of NGS testing is that it can capture both known and unknown pathogens without needing to form a hypothesis about what those pathogens might be. It is the same technology that uBiome uses to sequence the gut microbiome.

I'd be interested in hearing other people's opinions about this line of testing (including @alicec). It is going to be very expensive, but to be honest I don't really care. If I were to spend thousands and get no where from it, then so be it.

What do you guys think?