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Biomarker for chronic fatigue syndrome identified

med.stanford.edu

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Re: Biomarker for chronic fatigue syndrome identified

#111

Post by GordonS »

DanBC wrote: post #93
GordonS wrote: post #89

Earlier quoted context omitted.

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.

Sorry, but I disagree with your interpretation. It's quite possible to want your illness accurately diagnosed and described, while still being vehemently against the stigma of mental illness.

Re: Biomarker for chronic fatigue syndrome identified

#112

Post by GordonS »

cpncrunch wrote: post #68
GordonS wrote: post #53

Earlier quoted context omitted.

I don't think CFS is a mental illness, and I haven't seen evidence that that's the "leading hypothesis" (I've been diagnosed with CFS, although that was before I was later diagnosed with nerve damage), so this is something I've read deeply on. CFS can absolutely cause mental illness though - constant fatigue, and sometimes pain, can take a terrible toll.

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.

Re: Biomarker for chronic fatigue syndrome identified

#113

Post by rfugger »

Someone wrote: post #86
kurthr wrote: post #29

Earlier quoted context omitted.

AIDS was once considered a very complex disease, but it has a very accurate (HIV) test today. My big concern would be if, like cancer, there are really many diseases and Chronic Fatigue symptoms are common, not differentiating.

AIDS, like CFS, was never considered a disease in the medical sense. They both are called “syndrome”, which is medical short-hand for “interesting enough to study further, but frankly, we don’t know shit about what’s causing this”. https://en.wikipedia.org/wiki/Syndrome : ”A syndrome is a set of medical signs and symptoms that are correlated with each other and, often, with a particular disease or disorder.” That’s w…

On the other hand, there are times when blaming people for their misfortune is appropriate, and serves a social purpose. The hard part is telling when it is appropriate. It does seem pretty clear though that we tend to both give ourselves too much credit for our successes, and too much blame for our failures, overall.

Re: Biomarker for chronic fatigue syndrome identified

#114

Post by nuclx »

GordonS wrote: post #80
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 appoint…

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

Re: Biomarker for chronic fatigue syndrome identified

#115

Post by tempguy9999 »

jdietrich wrote: post #97
tempguy9999 wrote: post #87

Earlier quoted context omitted.

> 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

Studies: now that's a commendable rebuttal. I like that.

OK, I've skimmed these, let's take some quotes.

"People with lived experience of a mental illness commonly report feeling devalued, dismissed, and dehumanized by many of the health professionals with whom they come into contact"

People who have such problems too easily perceive slights that may not be there. I know this, I have to compensate for it. It's too easy to get hurt.

"On the other, they [people with serious mental illness] are challenged by the stereotypes and prejudice that result from misconceptions about mental illness"

And I just don't find this. Bar a few idiots, never have. I find people kind and considerate.

"As a result of both, people with mental illness are robbed of the opportunities that define a quality life: good jobs, safe housing, satisfactory health care, and affiliation with a diverse group of people"

Quite, but that loss in my case is not down to stigma or discrimination by others but my own shortcomings caused by the problems:

I don't have a good job, I haven't been able to work for months. That's not discrimination, that's because I'm unwell and just couldn't.

A while back I got so far behind with the rent (because I couldn't work) the landlord had every right to throw me out. That he didn't only reflected on his decency and trust in me, but for that I'd quite likely be on the streets.

This "affiliation with a diverse group of people" - I don't have that because, fuck, guess why? And loneliness is a terrible thing. I've had few partners in my life, guess again why? It's not because they discriminated against me, it's because I'm not 'normal' to be around (though getting better, thanks for asking). It's not discrimination, it's them picking the more suitable partner. And I just can't blame them!

Does that make sense?

Anyway, since I've read yours, please read mine. You sound like you do actual research, but unfortunately this nastiness is my life.

https://news.ycombinator.com/item?id=19767632

https://news.ycombinator.com/item?id=19767742

https://news.ycombinator.com/item?id=19767906

Re: Biomarker for chronic fatigue syndrome identified

#116

Post by GordonS »

daegloe wrote: post #88

Off topic, but does anyone know why this post didn’t match up with my submission from last week [0]? I know scheme and querystring can throw it off. But in this case the links appear to be the same? Not sore about it, genuinely curious what the matching rules look like! [0] https://news.ycombinator.com/item?id=19783668

Sometimes the mods let dupes through, if they feel it's an important story that didn't get any/enough attention last time round.

Re: Biomarker for chronic fatigue syndrome identified

#117

Post by GordonS »

erentz wrote: post #99
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…

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…

For anyone reading this that doesn't know what a "sed-rate test" is, it's an erythrocyte sedimentation test[0]

[0] https://en.wikipedia.org/wiki/Erythrocyte_sedimentation_rate

Re: Biomarker for chronic fatigue syndrome identified

#118

Post by rfugger »

not_a_moth wrote: post #107

Since poor sleep quality is a core symptom of CFS I can't help wonder if sleep is the underlying component. I think we've all underestimated the critical nature of sleep in immune, metabolic, stress, cognitive aspects, etc. It's also hard to self-assess the quality of your sleep, eg. clock-time at each phase, central apnea events, 02 saturation, noise/ light/ movement disturbances while you are asleep, etc.

A sleep study is critical to ruling out sleep issues before getting a proper diagnosis of ME/CFS. No good doctor would diagnose CFS without a sleep study.

Re: Biomarker for chronic fatigue syndrome identified

#119

Post by ufo »

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 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)

Re: Biomarker for chronic fatigue syndrome identified

#120

Post by GordonS »

sagebird wrote: post #52
whalabi wrote: post #31

I'm just astonished by this. 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. It'll shift the thinking of everyone in the profession, of their families and friends and colleagues, and of themselves. It's a huge, huge breakthrough.

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.

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