Biomarker for chronic fatigue syndrome identified • Hacker News Board

Re: Biomarker for chronic fatigue syndrome identified

#91

Post by GordonS » Sun, May 05, 2019, 5:50 PM UTC

soulofmischief wrote: post #59

Medicine is a must for any empathetic society. However I wonder if the dawn of modern medicine was the end of natural human evolution. Now that people with diseases such as CFS and diabetes can receive help, we are no longer breeding these diseases out of the gene pool. As a result, we are actually spreading them epigenetically over time. We will be forced to turn to science, such as vaccines and pre- and post-birth…

I was diagnosed with CFS after being prescribed an immunosuppressant. I reacted badly to it, developing chronic pain and fatigue, so it's possible that's a vector (I say possible as CFS is a diagnosis of exclusion, and it's highly likely thatany people diagnosed with CFS have some other, undiagnosed condition of which fatigue and pain are a symptom).

Re: Biomarker for chronic fatigue syndrome identified

#92

Post by Geimfari » Sun, May 05, 2019, 5:51 PM UTC

ufo wrote: post #5

DiseasedBadger wrote: post #4

But which is the cause? Perhaps someone convinced they're ill, weakens their own immune system - either through some psychosomatic mechanism, or through associated behaviors.

No one knows the cause yet, which is why studies like this are important. Please don't idly suggest that CFS is just something psychosomatic or behavioral. The disease is much more debilitating than that, and this very common psychological misdiagnosis most often leads to dangerous advice. For example, CFS patients are often told by doctors to excercise, which actually only makes the symptoms even worse.

I have severe CFS, but I personally don't take it badly when someone suggests it's psychosomatic. Since everything I know and everything I feel is a hallucination of the mind, I have no way of knowing what my subconsciousness is influencing. "Psychosomatic" also doesn't mean "it's your imagination", but that it may be an interplay between mind and body. The mind does control many responses and hormonal activity.

Re: Biomarker for chronic fatigue syndrome identified

#93

Post by DanBC » Sun, May 05, 2019, 5:56 PM UTC

GordonS wrote: post #89

DanBC wrote: post #38

Earlier quoted context omitted.

It's also irresponsible to suggest, as you do here, that "psychosomatic" means "they're making it up". Even if CFs is a somatoform disorder the sufferers aren't making it up, they genuinely feel fatigued.

That's a bit of an uncharitable reading of the parent's comment - they do specific call out some doctors as making patients feel this way, rather than assert that as their own opinion.

Read their other comments. They're clearly saying that CFS isn't mental illness, it's "real" physical illness, and this is a common trope in the CFS community.

Re: Biomarker for chronic fatigue syndrome identified

#94

Post by erentz » Sun, May 05, 2019, 5:59 PM UTC

cpncrunch wrote: post #81

erentz wrote: post #75

Earlier quoted context omitted.

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 illn…

If you look at the evidence, all the studies so far show that CFS is triggered by stress and/or viral infections, and that the HPA axis is dysrupted. So it isn't my "conclusion", it's just what the evidence is showing. Also, mental health is intrinsically linked to the stress system. Mental stress causes depression. https://link.springer.com/article/10.1007/s00213-016-4218-9 If you talk to patients who have severe CF…

I know the HPA axis has been an interesting line of investigation, but not everyone with CFS is showing up with HPA axis issues. I still disagree with the direction that the illness is primarily a mental illness simply because it can result in some mental symptoms. If primarily it is physical in nature, as measured on various tests, and in your case may be caused by an endocrinological dysfunction, and secondarily it causes changes in mood or behavior that doesn't make it a mental illness. (I'm familiar with PEM myself but do not have any severe mood change during it myself.)

Take for example African sleeping sickness. After initial infection the patients have a number of mood and behavior changes, excessive sleepiness, confusion, etc. that might appear mental. But it would be absurd to classify it as a mental illness. It sounds very similar to the logic people are applying to ME/CFS in trying to label it mental.

Re: Biomarker for chronic fatigue syndrome identified

#95

Post by Geimfari » Sun, May 05, 2019, 6:00 PM UTC

soulofmischief wrote: post #59

Medicine is a must for any empathetic society. However I wonder if the dawn of modern medicine was the end of natural human evolution. Now that people with diseases such as CFS and diabetes can receive help, we are no longer breeding these diseases out of the gene pool. As a result, we are actually spreading them epigenetically over time. We will be forced to turn to science, such as vaccines and pre- and post-birth…

Yes, CFS does often comes as a result of a mononucleosis, about 22% of adult mono cases have CFS after 6 months, and You don't get "tested" for CFS yet, it's currently a diagnosis given when all other explanations have been tried.

Re: Biomarker for chronic fatigue syndrome identified

#96

Post by cpach » Sun, May 05, 2019, 6:07 PM UTC

ipunchghosts wrote: post #71

heavenlyblue wrote: post #67

Earlier quoted context omitted.

>> 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.

Amazing!

Re: Biomarker for chronic fatigue syndrome identified

#97

Post by jdietrich » Sun, May 05, 2019, 6:10 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…

https://doi.org/10.1111/acps.12610

https://doi.org/10.1177/0840470416679413

https://www.ncbi.nlm.nih.gov/pubmed/16946807

Re: Biomarker for chronic fatigue syndrome identified

#98

Post by cpncrunch » Sun, May 05, 2019, 6:10 PM UTC

erentz wrote: post #94

cpncrunch wrote: post #81

Earlier quoted context omitted.

If you look at the evidence, all the studies so far show that CFS is triggered by stress and/or viral infections, and that the HPA axis is dysrupted. So it isn't my "conclusion", it's just what the evidence is showing. Also, mental health is intrinsically linked to the stress system. Mental stress causes depression. https://link.springer.com/article/10.1007/s00213-016-4218-9 If you talk to patients who have severe CF…

I know the HPA axis has been an interesting line of investigation, but not everyone with CFS is showing up with HPA axis issues. I still disagree with the direction that the illness is primarily a mental illness simply because it can result in some mental symptoms. If primarily it is physical in nature, as measured on various tests, and in your case may be caused by an endocrinological dysfunction, and secondarily it…

The difference is that an organic cause has been found for sleeping sickness. Also, patients don't recover after psychological therapies, as they do with CFS. It's important to be open-minded to all etiologies.

And I never said it was "primarily mental". I think it is primarily stress, which can cause mental symptoms (but not always).

Re: Biomarker for chronic fatigue syndrome identified

#99

Post by erentz » Sun, May 05, 2019, 6:11 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…

Create a spreadsheet of possible illnesses that cause the symptoms you have, and start working through what testing needs to be done to exclude them. A number you may be able to exclude off the bat because they don't fit well or you have recent testing from a physical that would exclude them (e.g. common cancers). Then working with your doctor to get tests to exclude the rest. Have you done a sed-rate test? (Often it is low <3 for ME/CFS, but normally nobody looks at it in that direction, they only look for it being a marker of inflammation if its high.) Have you had a sleep study to rule out sleep apnea for example? Have you checked yourself for orthostatic intolerance or POTS? (Easy to do with a pulse oximeter at home before worrying about official tests.) And so on. You'll find plenty of information at me-pedia to help you along the path of a differential diagnosis.

Re: Biomarker for chronic fatigue syndrome identified

#100

Post by kens » Sun, May 05, 2019, 6:22 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…

As a cautionary note, consider the Whittemore Peterson Institute for Neuro-Immune Disease. It was founded by parents of a CFS patient to research CFS. In 2006, this institute found the XMRV virus in CFS patients, showing a physical basis for CFS and the potential for a cure. Unfortunately, XMRV turned out to be a lab contaminant, leading to retracted publications, people being fired, and a big mess.

Of course, this indicates nothing about the current result, which hopefully pans out.