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Biomarker for chronic fatigue syndrome identified

med.stanford.edu

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Re: Biomarker for chronic fatigue syndrome identified

#141

Post by Knufen »

SonOfThePlower wrote: post #135
ipunchghosts wrote: post #57

Journalists, this is quite the story. Here you have a bunch of really sick patients with docs around the world saying it's in there head. Then a UK study comes out (PACE) saying patients should engage in activity to help themselves. This only makes the patients worse and eventually so bad that the study was pulled. In comes dr ron davis. His son acquired me cfs while traveling in india. Completely unsatisfied with th…

Best wishes to dr R.Davis and his team - great job! My uncle suffers from Guillaine-Barre Syndrom (GBS) (or rather A-CIDP, but that still needs to be determined). I'm trying to educate myself on GBS and research newest treatment methods, but most resources/articles are paywalled. That does not help.

There is a certain website that allows you to bypass paywalls, All you need is the doi number.

Re: Biomarker for chronic fatigue syndrome identified

#142

Post by perl4ever »

wavepruner wrote: post #129
GordonS wrote: post #55

Earlier quoted context omitted.

Keep in mind that CFS is a currently a diagnosis of exclusion - many people labelled with CFS may in fact have another, undiagnosed illness. For example, it's been found that a lot of CFS (and fibromyalgia) patients turn out to have small fiber neuropathy (damage to he nerve fibers that signal pain), and neurotoxins have been shown to cause general fatigue (I'm in mobile, so no references for now I'm afraid). The ski…

I found out last year the root cause of my CFS is life-long mercury toxicity (a well understood neurotoxin). I am responding very positively to treatment. I rarely talk about it because people get very upset when I tell them about the evidence of where the mercury came from.

I don't get angry like some people about "anti-vaxxers", but the reason I am not one, is because I think that if low levels of mercury were a major health issue, then it would be apparent in large populations that consume a relatively large amount of mercury-containing seafood. e.g. Japan. And in Japan, there have also, as it happens, been incidents of acute mercury poisoning with significant numbers of people, so the difference between toxic and non-toxic levels is clear.

Re: Biomarker for chronic fatigue syndrome identified

#143

Post by GordonS »

cpncrunch wrote: post #127
GordonS wrote: post #112

Earlier quoted context omitted.

Some evidence sure, not "the" evidence. Unfortunately I don't know any CFS patients that have recovered, or even gone into remission; for everyone I know, it's been a chronic condition.

>Some evidence sure, not "the" evidence. At least 4 studies that looked at it all found that it was triggered by stress or viral infection. If you're aware of any other contrary evidence, I'm interested. >Unfortunately I don't know any CFS patients that have recovered, or even gone into remission; for everyone I know, it's been a chronic condition. Here on HN there is myself and tomhoward for starters, and I know lot…

> viral infections (which are physiologically stressful)

There is evidence relating to viral infections, yes. But is it really necessary to refer to such infections being "physiologically stressful"? I just don't see the relevance of that.

> Here on HN there is myself and tomhoward for starters, and I know lots of other patients who have also recovered

Sorry, I didn't mean to imply recovery wasn't possible, but re-reading my comment I can see how it might have come across that way.

Re: Biomarker for chronic fatigue syndrome identified

#144

Post by [deleted] »

GordonS wrote: post #120
sagebird wrote: post #52

Earlier quoted context omitted.

I would like to see controls that make an attempt to differentiate psychogenic causes. IE if you paid 20 people who do not claim to have chronic fatigue syndrome but have depression to fake having chronic fatigue syndrome for two months- eg watch tv on a couch, then they were tested, I wonder if they would not have the biomarkers. Likewise, I would like to see how people who claim to have fibromyalgia would do on thi…

> fake having chronic fatigue syndrome for two months- eg watch tv on a couch If that's what you think CFS is like, you should do some reading before posting something so obviously insulting.

[deleted]

Re: Biomarker for chronic fatigue syndrome identified

#146

Post by zemvpferreira »

wavepruner wrote: post #129
GordonS wrote: post #55

Earlier quoted context omitted.

Keep in mind that CFS is a currently a diagnosis of exclusion - many people labelled with CFS may in fact have another, undiagnosed illness. For example, it's been found that a lot of CFS (and fibromyalgia) patients turn out to have small fiber neuropathy (damage to he nerve fibers that signal pain), and neurotoxins have been shown to cause general fatigue (I'm in mobile, so no references for now I'm afraid). The ski…

I found out last year the root cause of my CFS is life-long mercury toxicity (a well understood neurotoxin). I am responding very positively to treatment. I rarely talk about it because people get very upset when I tell them about the evidence of where the mercury came from.

Do tell please, it would be educating for all of us. Hopefully you’ll find a less negative reception in this thread.

Re: Biomarker for chronic fatigue syndrome identified

#147

Post by bpfrh »

nuclx wrote: post #114
GordonS wrote: post #80

Earlier quoted context omitted.

Many CFS patients have learned the hard way about the outcome of the PACE study, and many have found the methods of the study itself to be deeply questionable. Even today the NICE guidance and doctors both still recommend exercise - despite many CFS patients having found out the hard way about the damage it can cause. The NICE guidance is currently under review, with new guidance due to be issued in 2020. But appoint…

What kind of harm does exercise do? Can you refer to any sources?

It leads to worsening of the illness. A CFS patient who goes beyond the boundaries of his energy reservers shrinks these. That leads to smaller and smaller energy reservers, till you can't get out of the bed, sit upright, read longer text, type longer comments.

Re: Biomarker for chronic fatigue syndrome identified

#148

Post by bpfrh »

ufo wrote: post #119
nuclx wrote: post #114

Earlier quoted context omitted.

What kind of harm does exercise do? Can you refer to any sources?

It aggravates the symptoms of CFS (fatigue, pain, headaches, etc). It can last multiple days after exercise. (Source: I know a person who suffers from CFS)

not only days, it can be forever.

Re: Biomarker for chronic fatigue syndrome identified

#149

Post by SonOfThePlower »

Knufen wrote: post #141
SonOfThePlower wrote: post #135

Earlier quoted context omitted.

Best wishes to dr R.Davis and his team - great job! My uncle suffers from Guillaine-Barre Syndrom (GBS) (or rather A-CIDP, but that still needs to be determined). I'm trying to educate myself on GBS and research newest treatment methods, but most resources/articles are paywalled. That does not help.

There is a certain website that allows you to bypass paywalls, All you need is the doi number.

Thanks!

Re: Biomarker for chronic fatigue syndrome identified

#150

Post by rufus85 »

jdietrich wrote: post #74
erentz wrote: post #65

Earlier quoted context omitted.

> The leading hypothesis remains that chronic fatigue syndrome is a mental illness. According to who? At least in the USA I see no evidence of that. The research is all pointing towards dysautonomia, dysimmunity, and metabolic issues.

The literature published over the last decade or so gives a highly biased picture, because people keep threatening to kill psychiatrists who research CFS. Understandably, most psychiatrists have abandoned the field for their own safety. Lots of people are researching biomedical factors, but nobody has identified a plausible biomedical etiology. https://doi.org/10.1136/bmj.d3780

There is no dangerous CFS militant movement that threatens to kill psychiatrists. There are just some psychiatrists who can't handle criticism and get their journalist friends to write these smear articles in the hopes it will silence their critics.

https://me-pedia.org/wiki/PACE_trial#Allegations_of_harassme...

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