Biomarker for chronic fatigue syndrome identified • Hacker News Board

Re: Biomarker for chronic fatigue syndrome identified

#131

Post by jm__87 » Sun, May 05, 2019, 7:34 PM UTC

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.

Where did the mercury come from?

Re: Biomarker for chronic fatigue syndrome identified

#132

Post by skinnyarms » Sun, May 05, 2019, 7:36 PM UTC

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?

A quick google of "CFS exercise" lead me to few articles, this is the one I'm reading now: https://www.npr.org/sections/health-shots/2017/10/02/5543693...

The information is sourced from the official CDC guidelines on ME/CFS: https://www.cdc.gov/me-cfs/index.html

Re: Biomarker for chronic fatigue syndrome identified

#133

Post by thom » Sun, May 05, 2019, 7:41 PM UTC

febeling wrote: post #130

wavepruner wrote: post #129

Earlier quoted context omitted.

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?

Going to assume given the way this is phrased that the poster means a vaccination.

Re: Biomarker for chronic fatigue syndrome identified

#134

Post by everly » Sun, May 05, 2019, 7:44 PM UTC

febeling wrote: post #130

wavepruner wrote: post #129

Earlier quoted context omitted.

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?

IMO he is clearly implying it came from a vaccine(s) but he is trying to do it without being seen as an anti-vaxxer.

Re: Biomarker for chronic fatigue syndrome identified

#135

Post by SonOfThePlower » Sun, May 05, 2019, 7:46 PM UTC

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.

Re: Biomarker for chronic fatigue syndrome identified

#136

Post by thom » Sun, May 05, 2019, 7:52 PM UTC

tempguy9999 wrote: post #87

jdietrich wrote: post #48

Earlier quoted context omitted.

>Millions of people (in the US alone!) suffer from this illness and I think everyone has wondered, or heard it wondered, if it's imaginary. For all these people to know there's something actually physically wrong with them is massive. IMO the broader issue is the stigma against mental illness. The leading hypothesis remains that chronic fatigue syndrome is a mental illness. Both your comment and the linked article im…

> IMO the broader issue is the stigma against mental illness Yeah yeah that rubbish again. I have mental illness (see my posts for boring details) and I've always been open about it, except when it's so obvious that people pick up on it without my assistance. I've never had a problem. Stop saying there is a stigma. Any stigma may be down much more to the individual's anticipation of stigma which might cause them to n…

Surely the 'sad manifestations' are the whole point. If you have never been unable to work because of mental illness, or if you have been signed off but otherwise fairly treated by your employer, then I think you have dodged a bullet that many others haven't.

Re: Biomarker for chronic fatigue syndrome identified

#137

Post by kens » Sun, May 05, 2019, 7:58 PM UTC

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…

Thanks for the paper link. I read the paper and it's really a semiconductor sensor engineering paper, not a biology paper. The paper seems very preliminary; it shows that CFS and non-CFS sample have widely different impedances under osmotic stress, but the mechanism behind this is entirely hand-waving.

If I'm reading the paper correctly, the samples were peripheral blood mononuclear cells (i.e. lots of different cell types) in their own plasma. It would be nice to have samples that weren't so heterogeneous, since it's unclear what type of cell is causing the effect, or if it is something in the plasma.

It would be nice if the paper gave the actual measured resistances, rather than % deviation from normalized impedance which is an unusual unit. The paper's use of machine learning seems entirely pointless, basically drawing the obvious line between the two sets of points.

The discussion section didn't seem to have anything concrete. It reminded me of a patent application where you try to list everything that might possibly turn out to be vaguely related.

I apologize for the negativity; the paper's result is very exciting so I hope it pans out, but I found the paper itself disappointing.

Re: Biomarker for chronic fatigue syndrome identified

#138

Post by Erik816 » Sun, May 05, 2019, 8:01 PM UTC

rfugger wrote: post #125

viburnum wrote: post #63

That you can measure stress response in blood cells doesn’t rule out that the disease is psychological in origin (although I doubt CFS is).

At this point, I don't care about the origin nearly as much as finding an effective treatment :)

Agreed, people are very hung up on the mind/body problem. It's a pretty interesting philosophical question, but not that relevant to helping truly sick people get better.

Re: Biomarker for chronic fatigue syndrome identified

#139

Post by throwaway34241 » Sun, May 05, 2019, 8:09 PM UTC

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…

You say you've seen the doctor, hopefully that included seeing a sleep specialist and having a sleep study done? Sleep apnea is very common, and people can have it even if they do not snore and are not overweight (although gaining weight is a major risk factor). And in earlier stages patients may not even have apneas, they just move out of deep sleep.

Maybe you've already been checked but I just thought I'd mention it since it's a very commonly overlooked diagnosis (an estimated 80% of cases are not diagnosed), and declining sleep quality and falling asleep during the day are major symptoms of it. I have a relative that eventually got treated and it made a major difference for them.

Re: Biomarker for chronic fatigue syndrome identified

#140

Post by GordonS » Sun, May 05, 2019, 8:15 PM UTC

rfugger wrote: post #124

GordonS wrote: post #62

Earlier quoted context omitted.

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 abou…

Hypochondriasis is real, sure.

But I'm not talking about cases like that, I'm talking about patients behaving perfectly rationally, but insistently.