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Biomarker for chronic fatigue syndrome identified

med.stanford.edu

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Re: Biomarker for chronic fatigue syndrome identified

#121

Post by rfugger »

jchw wrote: post #54
jaxgeller wrote: post #12

If you are living with CFS i recommend giving https://cfsremission.com/ a look.

Woah, I’m now wondering if CFS might be what’s been wrong with me for a while, but I’m not sure. I definitely have terrible sleep, I can barely stay awake during meetings, and I have some of the other symptoms sometimes associated with this (tender lymph nodes in neck, IBS, tinnitus.) I’ve been in and out of the doctor for a couple years, with weird pains, and most recently a lymph node that is a little enlarged in t…

The hallmark of CFS is post-exertional malaise, which is feeling terribly after exertion that is overly strenuous (for you). The onset of PEM can be a few hours, a day, or even a week or more after the exertion, so it can be very hard to pin down. The real way to tell is to cease exertions for a period and see if there is improvement in your symptoms. Contrast this with depression, where exercise will tend to improve your symptoms.

A second hallmark is unrefreshing sleep. Not necessarily that you don't sleep or don't sleep well, but that no matter how long or how well you sleep, you wake up feeling like you just ran a marathon. If you don't sleep well, see a sleep doctor. That may fix the issue.

Re: Biomarker for chronic fatigue syndrome identified

#123

Post by ipunchghosts »

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…

Wow, this really blew up. Thank you for your support.

Consider donating to the open medical foundation which funds a good portion of this research (i did).

https://www.omf.ngo/ways-to-donate/

Re: Biomarker for chronic fatigue syndrome identified

#124

Post by rfugger »

GordonS wrote: post #62
NautilusWave wrote: post #44

This biomarker seems incredibly general; I suspect people with certain presentations of a mitochondrial disease would have the same biomarker.

Agreed, but it's still great to have evidence of a physical condition, as many CFS patients have been made to feel like crackpots at some point, and indeed some doctors use it as a convenient label for people they believe to be mentally ill. Of course, this also raises a question about how those with mental illness are often treated.

To be fair, if someone is overly anxious and neurotic about minor physical symptoms, to the point that the anxiety is making things worse, often the best thing a doctor can do is reassure them that they are fine, to stop worrying, and send them home. Taking those patients' physical symptoms too seriously may be the worst thing to do. I can see that it must be hard for doctors, especially if they only really have about 12 minutes to make a determination...

Re: Biomarker for chronic fatigue syndrome identified

#126

Post by ipunchghosts »

danieltillett wrote: post #3
Smaug123 wrote: post #2

Paper at https://www.pnas.org/content/pnas/early/2019/04/24/190127411... Pleasantly surprised to discover that it was legally available! The test appears to be ridiculously good. Perfect separation of 40 subjects into those who have been diagnosed with CFS and those who are known to be healthy, from blood samples. I want to see this replicated, by people who are not the original authors; but if this test is anything…

I have to agree with you here - the separation is too good. You just never get anything in the real world that works this well with complex diseases.

Who care is the separation is "too good." It's a lead. This is what science is. You find leads and followup on them. Lots of dead ends in the process.

Re: Biomarker for chronic fatigue syndrome identified

#127

Post by cpncrunch »

GordonS wrote: post #112
cpncrunch wrote: post #68

Earlier quoted context omitted.

The evidence shows that CFS is triggered by stress or viral infections (which are physiologically stressful), and that it is associated with dysruptions to the HPA axis. Everyone I know who has recovered (including myself) has said that dealing with psychological issues is the most important factor in recovering.

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 lots of other patients who have also recovered. We tend not to post too much in CFS forums, though, due to the negativity and hostility towards recovered patients.

Re: Biomarker for chronic fatigue syndrome identified

#128

Post by nosianu »

olliej wrote: post #122

40 people isn’t a super large sample size. Given there are huge numbers of people who claim to have cfs I would have expected much larger.

This is a poor statement since you leave out important qualifiers that would give it some beef. you can't just auto-post "sample size too low" whenever you don't see a thousand people, you have to go deeper to justify your opinion. This sample size can be way to low or it can be very high, completely depends on the population and what you want to show and with what confidence. Summary here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2876926/

But a study like this one here, i.e. if one were to be made, would have plenty of power with a sample size of 40: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC300808/ (also consider the opposite, how many participants it would take before you believe the result, but that kind of study would not be permitted; how many does it take to be saved before you believe it) This study - or the lack thereof, which the paper is about - nicely shows that when there is confidence about the underlying mechanism you feel much less (here: no) need for statistics and an RCT.

Re: Biomarker for chronic fatigue syndrome identified

#129

Post by wavepruner »

GordonS wrote: post #55
Smaug123 wrote: post #2

Paper at https://www.pnas.org/content/pnas/early/2019/04/24/190127411... Pleasantly surprised to discover that it was legally available! The test appears to be ridiculously good. Perfect separation of 40 subjects into those who have been diagnosed with CFS and those who are known to be healthy, from blood samples. I want to see this replicated, by people who are not the original authors; but if this test is anything…

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.

Re: Biomarker for chronic fatigue syndrome identified

#130

Post by febeling »

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.

Nice curiosity gap there. Where did the mercury come from?
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