Science - Understanding myalgic encephalomyelitis, Sonya Marshall-Gradisnik & Natalie Eaton-Fitch

Quote:

An important research challenge is the lack of a validated biomarker, laboratory-based test, and animal model, likely attributed to inconsistency in protocols, such as cell isolation, sample type, and technique. These challenges provide important lessons for research of Long Covid. By developing interdisciplinary and consistent research protocols, the pathomechanism of ME/CFS and Long Covid can be elucidated. The recent interest in the overlap that exists between ME/CFS and Long Covid poses several questions, such as whether Long Covid predisposes a person to ME/CFS, and whether an individual has Long Covid or ME/CFS. Research into the etiology of ME/CFS and Long Covid should simultaneously identify the mechanism and diagnostic approach to both. ME/CFS poses a substantial health concern and has recently been taken more seriously since the emergence of Long Covid, and renewed focus on diagnostic, research, and treatment practices is needed.

https://www.science.org/doi/10.1126/science.abo1261

 

Dr Topol seems easily pleased. The review seems to meander through everything and come to no very useful conclusion. There is a marked absence of reference to important negative findings.

 

I wish instead of stuff like this we had articles about e.g. trying to understand the mechanisms behind post-exertional malaise, which is actually what is needed.

This just seems wishywashy and contributes to a "medical mystery" narrative of ME/CFS as a cluster of non-specific symptoms and basically a mess to think about or deal with.

 

@Ariel

Another article on a different thread on the Forum (I can't locate the thread), questions whether the virus we had is still with us, albeit very hidden, or has it hit and run, leaving our immune systems in over drive?

I'm wondering if the first scenario is true. Especially as I sit here, after many hours of couch rest. A simple trip to town for groceries, my husband doing the driving, invariably leaves me weaker, more fatigued and flu-like for a day, or two, or three.

It feels like when I had a flu, pre ME, and went back to work too soon: just drained. Or even when resolving to go back to work, and getting ready for work was all it took to make me feel worse and exhausted. Given a few more days of rest, and I was fine.

But with ME, It's almost 38 years for me of revolving PEM. The breaks from PEM are only marginally better.

Early on, several positive acute EBV test results over several years, also add to my leaning towards wondering if I still have an active EBV infection. And or, maybe Cytomegalovirus. I've had both. Maybe other viruses as well.

For most of my life I've had recurring herpes simplex cold sores. This virus stays with us. EBV supposedly lays dormant for most. But, what if it's hidden from all the tests we can throw at it, but it's what's keeping us sick?

It's a simple basic view, but maybe there is something to it.

 

I haven't read the review but in terms of identifying the underlying cause/solving the "medical mystery" GWAS aims to do that --- e.g. the (too) small Norwegian study turned up TPPP gene (thread on this website). So yea forget the medical mystery bit and look at the available tools --- like GWAS