BEST Overview of ME/CFS to date!

[sometexan84]

Pathological Mechanisms Underlying Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

From July 2019
By Daniel Missailidis, Sarah J. Annesley and Paul R. Fisher
Department of Physiology Anatomy and Microbiology, La Trobe University, VIC 3086, Australia

Conflicts of Interest: The authors declare no conflict of interest.

This is the best thing I've seen since I started my research 6 months ago!

This piece goes over all of the key pathological, physiological, and pathophysiological aspects of CFS including all the latest findings. And it does a great job putting it all together. Very up-to-date, non-presumptuous, 195 References (including many recent studies from 2019, 2018, and 2017).

Very comprehensive, very well-organized. I mean, Guys! they clearly put a ton of work into this!

I'm more than halfway through it, but had to go ahead and share for others. Needless to say, I'll be bookmarking it so I can dissect it further and dig deeper into all of it, especially some of their study references I didn't know about.

Keep in mind, this is very "sciency" stuff, so know that going in (but it's actually way less sciency than it could be, so another bonus). But if you're into that sort of thing, this is 100% for you!!

Again, I haven't finished yet, but just like some very quick highlights I noticed on 1st 1/2 read...

• They detail all the recent stuff about ATP synthesis, glycolysis, mitochondria dysfunction, and how all that stuff causes the energy stress signaling.
• The potential relationship between all that and the gut microbiota
• And of course, autonomic nervous dysregulation
• Best of all, the DON'T talk about any old-school BS stuff

I'll add more summaries once I've gone through it all.

 

[Nedge]

Thanks for sharing. I look forward to reading it with a bit more understanding when my brain reconstitutes (feels like cold porridge ATM), but from a quick glance it does look like an interesting summary - good one

 

[andyguitar]

Best of all, the DON'T talk about any old-school BS stuff

What stuff is that would you say?

 

[valentinelynx]

What stuff is that would you say?

Probably talking about the "biopsychosocial" stuff popular in the UK & at least some of Europe.

 

[Wishful]

I skimmed through it. It didn't actually come to any distinct conclusions. It's all inconclusive, contradictory, and "theoretically, this might cause that, but we can't find any evidence to support it". In short, nothing is really known about ME at this point.

Calling it the best overview just indicates how empty all the other overviews are.

I'm still amazed that with all the super-duper medical testing equipment available today, the researchers still can't find a definite marker. My guess is that they're looking in the wrong place (the body) because that's so much cheaper/easier than looking in specific locations in the brain. What if, for example, the cells in the hypothalamus work a bit differently from those elsewhere in the brain, and that there can be a fairly minor dysfunction in the glial cells or mitochondria just there and nowhere else? There might be a clear marker there, but you won't find it outside of the hypothalamus. To make it even more difficult, the specific dysfunction might only be during active function, so even if you suck a tiny sample of fluid from the correct part of the brain, the molecular evidence breaks down before you can actually process the sample. Autopsy samples might be useless. If that's the case, we'll have to wait for researchers to try PET, various flavours of MRI or other such expensive techniques for identifying molecular functions in live brains.

 

[Pearshaped]

thank you for sharing.
Now, the new challenge:
How to get your GP or ANY Doctor to read ALL this..
Gunpoint?( kidding!)

 

[sometexan84]

What stuff is that would you say?

Idk, like injury to the central nervous system, or that there's a single thing that causes CFS, I like that they avoided going in-depth w/ the different types of viruses involved, and instead focused more on the aftermath, like going over the actual dysfunctions in the body and how they can all correlate w/ one another.

 

[Hip]

You might like this research overview also.

 

[sometexan84]

It didn't actually come to any distinct conclusions.

I thought they did an excellent job of summarizing each element and demonstrating how interconnected everything is, and how important it is to not only understand how one element feeds off another element and vice-versa, but also for future studies to keep this in mind as we look for more direct "cause-effect relationships".

This line here I like a lot, and I thought it summed up a good portion of it...

It is likely that the inflammation and immune dysfunction classically studied in ME/CFS are entangled with dysfunctional energetics, gut health, or autonomic and adrenal dysregulation.

This is just a guide, to help better understand things. And it's not aimed at just one person. Not all elements discussed in the article are going to resonate w/ a single individual.

I'm still amazed that with all the super-duper medical testing equipment available today, the researchers still can't find a definite marker.

There are a ton of verified biomarkers: lactulose to mannitol ratio (L:M), Prostaglandin E2, HRV RMSSD, Protein Kinase R (PKR), TORC1, excessive IFN-I (Interferon Type I) signaling, etc etc

I doubt there will ever be one single ME/CFS biomarker though, where they say "100% of ME/CFS patients tested positive for marker ????, while 0% of HC were positive." That's not likely.

 

[sometexan84]

You might like this research overview also.

Indeed I do, thank you for sharing!

 

[valentinelynx]

like injury to the central nervous system

And why exactly would that be "old school BS"?

 

[Rufous McKinney]

Best of all, the DON'T talk about any old-school BS stuff

Great news!

My single biggest objection to many of the overview type- articles (for instance) or news announcements or what have you ALWAYS go off on: the history of our abandonment, the psychological stuff. Even if they are saying its not true, it reinforces the beliefs of those who think its true.

this continually provides an escape route to continue to: view our illness as something for the Lazies and Unmotivated.

I want to distribute some good overview info to people to increase ME awarenss but it like always comes with this crap.

Or : the British problem with PACE-

Can we ever move past 1986?

 

[Rufous McKinney]

You might like this research overview also.

That one is pretty Excellent!

It stays focused in a good way.

I am printing out several copies.

I will hand it to my doctor, but chances are he won't read it- cause he has other things he does after work. At least I received an SEID diagnosis from him- he does care.

When do: they do what we would consider- this extra work?

 

[Nedge]

My single biggest objection to many of the overview type- articles (for instance) or news announcements or what have you ALWAYS go off on: the history of our abandonment, the psychological stuff. Even if they are saying its not true, it reinforces the beliefs of those who think its true.

I may be very new to all this but I don't see why it isn't possible that childhood trauma can affect neurological and/or other system development in a cohort of CFS sufferers. That is not to say it has a psychological basis for this (or any) group, but that trauma can have a physiological impact which when paired with other factors can lead to this condition. This is an idea that interests me. I don't mean to be argumentative or to hijack the thread, I'm just curious to know of any research post the ACE study that explores the effects of childhood trauma on developing physiology.

 

[Wishful]

but that trauma can have a physiological impact which when paired with other factors can lead to this condition.

Certainly possible, but the same applies to eating too much licorice (or whatever) at a certain point in development. I'd put psychological factors as one of millions of other possibilities for influencing later health. It's not that the idea is wrong, it's just that it doesn't seem worth pursuing. Once we get a proper diagnostic test for ME, and build up a large enough database for ME patients, then we can look for common factors that lead to a higher chance of developing ME.

 

[Nedge]

Good point. I definitely may have had licorice exposure when I was young...

 

[valentinelynx]

I may be very new to all this but I don't see why it isn't possible that childhood trauma can affect neurological and/or other system development in a cohort of CFS sufferers.

As you say, it could be a factor. The problem is that it's an easy way out for people who don't want to face the challenge of understanding this complex and devastating illness. They hear or read that it's the result of (or even may be the result of) childhood trauma and that's it, case closed. And if you object, then you MUST have childhood trauma and have "repressed" it.

 

[dreamydays]

I agree, both this and the ME action overview and good documents and we would be in such a better place if these were widespread within the medical community. Obviously we are not at the stage of root causes and blood tests (biomarkers). From all I have read, we will sadly getting an influx of new cohorts from Covid. These patients will get more sympathy but ultimately they need to understand pacing and not GET.

 

[Marylib]

You might also be interested in this one published by the same editors in 2020. I think the article cited by @sometexan84 is part of the one attached below?