• 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.

A paper Under Review: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Me/Cfs): The Biology of a Neglected Disease

SWAlexander

Senior Member
Messages
1,944

Abstract​

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic disease with debilitating symptoms that impact all aspects of life. The diverse symptom presentation indicates that ME/CFS is likely to have a multifactorial origin. However, it is an extremely understudied disease with no standardised diagnostic criteria or proven treatment avenues. It is hypothesised that environmental insults (such as acute infection, mainly viral) or stress in genetically susceptible individuals may trigger the development of ME/CFS. These insults result in acute inflammatory responses, along with aberrant immune activation. A spiralling disruption of homeostasis promotes subsequent patho-mechanisms including gut dysbiosis and systemic inflammation, and eventually a pathological clotting system, chronic endothelialitis, vasoconstriction, and hypoxia. Additionally, dysfunctional energy metabolism including oxidative stressis also present in the development of ME/CFS. Since the exact pathophysiology of ME/CFS remains unclear, additional research is required to reveal further insight into this “neglected” disease.

https://papers.ssrn.com/sol3/papers.cfm?abstract_id=4622074
1699987035948.jpeg

1699987065262.jpeg
 

Wishful

Senior Member
Messages
5,751
Location
Alberta
In summary: "It's a disease. We don't know much about it, and what we do "know" is mostly unsubstantiated guesswork. More research is needed".

I like the start of the paper, giving a clear "this is a real disease" signal. That's the sort of information that should be required reading for anyone dealing with PWME. However, the body of the paper seems like a lot of speculation, giving too much weight to what are merely guesses about what is involved in ME. I noticed several instances of information stated as unequivocal fact, when it's just guesswork based on some small study. I think it would have been better if they presented the speculation with more emphasis on it being just speculation.

The recommended treatments section is also given too much weight. If you include lists of treatments, people will assume that there's some solid evidence for them working, while it's actually just some treatments maybe undergoing trials (no results yet), or some anecdotal reports about it working for a few people. It gives the opposite of the reality of "a few treatments work for a few people, with no way of knowing which treatments might work for someone else".