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Biomarker for chronic fatigue syndrome identified

med.stanford.edu

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Re: Biomarker for chronic fatigue syndrome identified

#71

Post by ipunchghosts »

heavenlyblue wrote: post #67
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…

>> This folks is how science is supposed to unfold and it all happening right in front of our eyes for everyone to see in real time. Quite astonishing. So you imply that only scientists with money and direct personal interest in the research are supposed to work on the given topic?

Not at all. What i mean is that scientists discovered a problem and 1) pursued it regardless of what the major funding agencies thought of it 2) encouraged patients to get involved and 3) informed the public of their progress regularly allowing for open discussion and collaboration.

Re: Biomarker for chronic fatigue syndrome identified

#72

Post by jxramos »

Can anyone explain the idea of salt as a cell stressor?

> The idea is to stress the samples from both healthy and ill patients using salt, and then compare how each sample affects the flow of the electrical current.

Is this an osmotic pressure change that stresses the cytoskeleton or something? Does a cell under a hypertonic solution change its cell membrane channel’s behavior?

Re: Biomarker for chronic fatigue syndrome identified

#73

Post by [deleted] »

jxramos wrote: post #72

Can anyone explain the idea of salt as a cell stressor? > The idea is to stress the samples from both healthy and ill patients using salt, and then compare how each sample affects the flow of the electrical current. Is this an osmotic pressure change that stresses the cytoskeleton or something? Does a cell under a hypertonic solution change its cell membrane channel’s behavior?

[deleted]

Re: Biomarker for chronic fatigue syndrome identified

#74

Post by jdietrich »

erentz wrote: post #65
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…

> 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

Re: Biomarker for chronic fatigue syndrome identified

#75

Post by erentz »

cpncrunch wrote: post #70
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.

Those are all well known to be significantly influenced by stress, and all the evidence is pointing towards the stress system being central to CFS.

I disagree with your conclusion that it’s “the stress system”, but even if so, that’s not a mental illness then. Whatever is going on in CFS isn’t causing behavior or mood etc. changes. It’s causing physical changes, such as the measurable dysautonomia, measurable response on the 2day CPET, measurably response in the invasive CPET that Systrom has been doing, so on. Sure CFS patients do often get comorbid mental illness such as anxiety about their health and depression due to their illness, but you’ve got the direction inversed.

Re: Biomarker for chronic fatigue syndrome identified

#76

Post by cpncrunch »

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…

(I'm fully recovered from CFS, although I still have occasional mild IBS).

There is certainly an overlap between CFS, IBS, lymph nodes, pain, fatigue, sleep problems and tinnitus: they can all be caused by stress. The most likely explanation ("I can barely stay awake during meetings") is probably that you need a better job.

Having said that, you do need to rule out other explanations, such as cancer. Talk to your doctor and see what he/she thinks.

Re: Biomarker for chronic fatigue syndrome identified

#77

Post by [deleted] »

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

[deleted]

Re: Biomarker for chronic fatigue syndrome identified

#78

Post by jchw »

cpncrunch wrote: post #76
jchw wrote: post #54

Earlier quoted context omitted.

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…

(I'm fully recovered from CFS, although I still have occasional mild IBS). There is certainly an overlap between CFS, IBS, lymph nodes, pain, fatigue, sleep problems and tinnitus: they can all be caused by stress. The most likely explanation ("I can barely stay awake during meetings") is probably that you need a better job. Having said that, you do need to rule out other explanations, such as cancer. Talk to your doc…

Meetings were just an example; I can barely stay awake period. My job is great, and my work life balance is good.

And of course, we are watching for cancer. It’s very unlikely at my age, but I definitely can’t rule it out.

Re: Biomarker for chronic fatigue syndrome identified

#79

Post by erentz »

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

So your evidence that the leading hypothesis is mental illness is the debunked PACE trial which caused harm to a lot of patients in the form of contraindicated exercise and denial of benefits, among the emotional harm it created.

And then to go on to claim because there's lack of research into psychological factors that the absence of that research supports it being the leading hypothesis. Oh, and also it's the fault of these mean sick patients that this is the case.

https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome...

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

Re: Biomarker for chronic fatigue syndrome identified

#80

Post by GordonS »

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…

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 appointment of certain panel members has been viewed with hostility by some CFS patients, and it's far from clear whether the new guidance will actually change its stance on exercise.

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