How to connect all the ME/CFS studies?

[Chips]

Does anyone know of a diagram/website etc where someone has pieced together the findings from various ME/CFS studies at all?

I’d love to see them all connected up like a jigsaw so we could try to trace the symptoms back to their origins, since it’s so hard to know what’s cause and effect in this illness. And perhaps noted with what findings are concrete (eIe. numerous studies agree) and what are possibilities.

If I had more energy and understanding of the science I’d try this but I just don’t unfortunately (severe and 95% bedbound)… I’m hoping someone will tell me this already exists though! Thanks for any help and apologies if I don’t reply quickly or am unable to!

 

[Ken Lassesen]

Tracing back to bacteria associations at the genus level is available at:

Citizen Science Symptoms To Genus Special Studies

So, any such diagram will likely have over 10000 lines... possibly 100,000 lines with.
Every one of the hundreds of different symptoms and lab results will make it even worse/

 

[Laura S]

Does anyone know of a diagram/website etc where someone has pieced together the findings from various ME/CFS studies at all?

I’d love to see them all connected up like a jigsaw so we could try to trace the symptoms back to their origins, since it’s so hard to know what’s cause and effect in this illness. And perhaps noted with what findings are concrete (eIe. numerous studies agree) and what are possibilities.

If I had more energy and understanding of the science I’d try this but I just don’t unfortunately (severe and 95% bedbound)… I’m hoping someone will tell me this already exists though! Thanks for any help and apologies if I don’t reply quickly or am unable to!

I agree this would be helpful...and massively time consuming! Hopefully someone will have the energy and funding to do so!

 

[Creekside]

Does anyone know of a diagram/website etc where someone has pieced together the findings from various ME/CFS studies at all?

How to determine reliability of the findings? There are a lot of poorly done studies out there. Many seem to have the goal of gaining citations, not actually increasing the knowledge about ME. Garbage in, garbage out.

I’d love to see them all connected up like a jigsaw so we could try to trace the symptoms back to their origins, since it’s so hard to know what’s cause and effect in this illness.

I can't offhand think of any studies so far that answer the question of "What is causing this symptom?" There are theories, but they seem to be supported by very weak evidence (if any), and often countered by a similar study showing opposite results (factor x is elevated in one study, depressed in another).

We're still waiting for a reliable biomarker. So, at present, your challenge is easy: there are no useful findings to piece together yet.

 

[SarahTee]

@Creekside, good point. It’s shocking to me that there still aren’t any decent studies, although this one that Cort wrote about recently seemed promising:

A Potential Blood Test for Chronic Fatigue Syndrome (ME/CFS)? - Health Rising

Using a tool called Raman spectroscopy UK researchers state they have gotten closer to producing a long-sought diagnostic biomarker for chronic fatigue syndrome (ME/CFS)

www.healthrising.org

Did you think it looked reasonable, pending duplication and further work?

 

[spark_matter]

Watch the itaconate shunt videos! There's flowcharts 🙂
It's my favorite hypothesis because with a bit of logical reasoning and biochemistry knowledge you can link it to most studies.

 

[Creekside]

Did you think it looked reasonable, pending duplication and further work?

I wasn't excited by it. The findings and theories contradicted my personal observations of my ME. Increased TRP in my brain made my ME symptoms worse, while 5-HTP (intermediary in the serotonin pathway) had no effect.

I think it's likely that ME's core dysfunction may not produce a significant marker in serum. ME might involve highly localized abnormalities in chemicals in parts of the brain, and those chemicals might not travel far or last long (some might vanish in less than a cell diameter). So, I generally don't get too excited about blood tests or even CSF tests for ME. I'd rather support neurological studies, such as brain scans for specific chemical activities.

A recent study about the complements system being involved in long-covid seems more likely to provide some answers. The complements part of the immune system seems poorly understood, so there's more potential for new discoveries. Maybe ME involves some specific protein that no one has bothered studying before, so no one has bothered to measure it in PWME.

 

[Chips]

Thanks everyone! I was hoping to try and understand how the more stand-out hypotheses and findings like the Itaconate shunt, Naviaux’s cell danger response, Kell & Pretorious’ clotting hypothesis, Wirth & Scheibenbogen’s theories, Lipkin from a while back… etc, as well as other findings like the recent WASF3 one all fit together. For instance, I realised that hypoxia seems to link a lot and saw that HIF1a regulates WASF3, but I know it’s so much more complex - I just really want to try and understand what’s happening in my own body.

I like the itaconate shunt hypothesis too - I wonder if it’s somehow a protective mechanism and if coming out of the loop it’s stuck in might be problematic, I guess we’ll know more in time.

I found these brilliant but massively overwhelming (for me at least) diagrams - I’m not sure I can actually use them as they’re so complicated but maybe someone else will find them useful so the links are below. Definitely shows what a complex web the researchers have to unpick - they’re my heroes!

Roche BCP

biochemical-pathways.com

Roche BCP

biochemical-pathways.com