Chronic fatigue syndrome may have a post-viral infection origin • Hacker News Board

Re: Chronic fatigue syndrome may have a post-viral infection origin

#241

Post by smearth » Mon, Sep 11, 2023, 7:25 PM UTC

nradov wrote: post #181

smearth wrote: post #96

Earlier quoted context omitted.

Why is the medical profession obsessed with biomarkers but not the next optimal step in patient treatment plans? Root cause analysis of dysfunction in complex dynamic systems is a waste of energy. Someone has the biomarker but they are a heroin addict which confers them a protective mechanism. What then? If you have 5 heroin addicts with similar symptoms you can just experiment with likely beneficial next treatment s…

Machine learning doesn't actually work very well for that. Attempts to apply it as you suggest in medical research have mostly not produced clinically useful results. More basic research into root causes is the only approach that is likely to lead to truly effective treatments.

Could you please explain it’s limitations/constraints for this use case.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#242

Post by whimsicalism » Mon, Sep 11, 2023, 7:25 PM UTC

Gibbon1 wrote: post #235

whimsicalism wrote: post #128

Earlier quoted context omitted.

While it may be true that CFS people have trouble getting doctors to take their symptoms seriously, it is also true that researchers who investigated psychosomatic origin of CFS had to to discontinue their research due to the number of death threats they were receiving.

An interesting thing is the number of conditions attributed to psychosomatic causes has been steadily shrinking over the last 100 years. 50 years ago if you had IBS or crohn's disease your doctor would send you to a psychiatrist

This is just not good reasoning. Just because some things have been mechanistically explained in the past 50 years doesn't mean that any arbitrary condition will eventually be non-somatically explained. In fact, the argument (vacuous as it is) could go the other way - anything that has left after we've shrunk the pool so considerably is considerably more likely to not have a non-somatic mechanistic explanation than anything in the original pool.

And FWIW, CBT is effective for IBS. But with the gut-brain connection, we really are pushing up against the bounds of mind-body dualism with stuff like this.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#243

Post by jacquesm » Mon, Sep 11, 2023, 7:26 PM UTC

whimsicalism wrote: post #166

AnimalMuppet wrote: post #144

Earlier quoted context omitted.

It's an issue when doctors deny it. For many years, for many doctors, that was the case with CFS.

There is still no identified viral mechanism for CFS. So yes, you will continue to find many doctors that deny that there is convincing evidence for viral causes of CFS because that is the reality of the current situation.

But: absence of evidence is not necessarily evidence of absence. The fact that we still haven't found convincing evidence (with the caveat that 'millions of people complain about certain symptoms' in my book counts as overwhelming evidence) doesn't mean that such a mechanism doesn't exist. It may merely mean that we are looking in the wrong places, may not be looking in the right way and in general still have a poor understanding of how our bodies really work.

GBS for instance:

https://www.who.int/news-room/fact-sheets/detail/guillain-ba...

Is linked to post viral or post bacterial infections, and even though here too there is a lack of complete understanding at least the symptoms are so clear (up to complete paralysis) that denying it seems pointless. It's also super rare, so there is no incentive to deny it.

But if COVID ends up putting a sizeable percentage of the workforce out of action that may well have serious implications for how we deal with chronic disease and post viral infections. Incidentally: this is one of the possible futures that various experts warned about during the early days of the pandemic, that it would be a decade or more before we would fully understand the impact and that by assuming the post infection consequences would be mild that we may have made a grave mistake.

Fortunately some of the more outrageous possibilities have so far not surfaced, this is one that we can deal with.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#244

Post by smearth » Mon, Sep 11, 2023, 7:28 PM UTC

jklinger410 wrote: post #207

smearth wrote: post #95

Earlier quoted context omitted.

You might think that but it doesn’t heal anyone. Recovery rates for cfs are abysmal, I’m surprised you aren’t ashamed of your profession’s performance in this area. You seem comfortable placing responsibility for the illness on your patients “avoidance”. Yet it is initiated by a virus and everyone has different levels of mitochondrial density, resilience and health and different inflammatory cascades. “Avoidance” of…

> You seem comfortable placing responsibility for the illness on your patients “avoidance”. You are misunderstanding this. Subconscious avoidance is not about responsibility. Think of the way rabies makes people hydrophobic. That is a psychosomatic response. A person is not in firm "control" of these responses, although they sometimes can be addressed with therapy.

Yes sorry about that.

Avoidance is a part of healing.

If the body is not healing therapy won’t help it.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#245

Post by [deleted] » Mon, Sep 11, 2023, 7:31 PM UTC

jassyr wrote: post #156

doingtheiroming wrote: post #70

Earlier quoted context omitted.

Auto Immune Disorder (IBD in my case) sufferer here. I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body (GI in my case) where the immune system is causing most damage at a given moment who will ask questions about other symptoms that we now have a good idea are likely the result of the same inflammation (depression, joint pain, peripheral neuropathy, CFS, etc.…

>I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body . . . . at no point, is there a department of immunology that takes over or even contributes. As a person with Multiple Sclerosis seeing a neurologist I have been wondering this very thing since my diagnosis. I am on a B-cell depleting drug. It feels silly talking to my neurologist about my B cells. Lots of te…

[deleted]

Re: Chronic fatigue syndrome may have a post-viral infection origin

#246

Post by doingtheiroming » Mon, Sep 11, 2023, 7:43 PM UTC

pixl97 wrote: post #232

doingtheiroming wrote: post #70

Earlier quoted context omitted.

Auto Immune Disorder (IBD in my case) sufferer here. I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body (GI in my case) where the immune system is causing most damage at a given moment who will ask questions about other symptoms that we now have a good idea are likely the result of the same inflammation (depression, joint pain, peripheral neuropathy, CFS, etc.…

> is there a department of immunology that takes over or even contributes. Because we don't see the immune system as the organ it is. Which is odd that things like vaccines are effectively medicines for that organ. But at the end of the day we still don't know 'that much' about the immune system because of its extreme complexity. It's still very difficult or impossible to target a bad acting immune response in an ind…

The book that accompanies the Kurzgesacht series is very good. I bought it for my eldest who enjoyed it enormously. He's been complaining about his HS biology lessons being rubbish as a result.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#247

Post by doingtheiroming » Mon, Sep 11, 2023, 7:45 PM UTC

sgtnoodle wrote: post #183

doingtheiroming wrote: post #70

Earlier quoted context omitted.

Auto Immune Disorder (IBD in my case) sufferer here. I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body (GI in my case) where the immune system is causing most damage at a given moment who will ask questions about other symptoms that we now have a good idea are likely the result of the same inflammation (depression, joint pain, peripheral neuropathy, CFS, etc.…

I'm curious about the small fiber neuropathy in your toes you mentioned. I was diagnosed with severe sarcoidosis a few years ago, and am currently taking azathioprine along with adalimumab. As far as I know the suppression is working regarding the sarcoidosis, although I've been having trouble with viral infections lingering a long time. Recently I've been noticing some burning and numbness in my toes, and your post…

Neuropathy is not a serious issue for me, but like depression, eczema and the rest it's something that I get as either as a co-symptom in a flare or a signal that a flare is coming. The docs like to use c-reactive protein as a biomarker, but I tend to find it's a trailing indicator of problems. I start expecting a flare when the subsidiary symptoms appear (eczema etc.) as they tend to be leading indicators. The problem is that because my GIs are only really interested in GI symptoms, they see those things as unrelated until the GI symptoms appear.

Other folk I know with AI diseases have seen similar patterns and have for example seen improvements to things like PN when they went on anti-inflammatory drugs (5-ASA in the case of one friend) which were prescribed for UC.

I don't think the PN was caused by the Azathioprine. I have always felt it was a co-sypmption that I get as a "bonus" when the colitis flares.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#248

Post by doingtheiroming » Mon, Sep 11, 2023, 7:55 PM UTC

spondylosaurus wrote: post #141

doingtheiroming wrote: post #70

Earlier quoted context omitted.

Auto Immune Disorder (IBD in my case) sufferer here. I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body (GI in my case) where the immune system is causing most damage at a given moment who will ask questions about other symptoms that we now have a good idea are likely the result of the same inflammation (depression, joint pain, peripheral neuropathy, CFS, etc.…

Hey, fellow IBD/autoimmune sufferer here! By chance, have you seen a rheumatologist? I got diagnosed with spondylitis first and Crohn's second, so I took the rheumatologist > gastroenterologist path, and a rheumatologist sort of does what you describe about systemic immune monitoring. Not perfectly, to be fair. And rheumatology is a criminally overlooked and understaffed specialty. But my rheumatologist has been real…

I've never seen a rhematologist. It does feel like the specialism that's closest to immunology. My docs always ask about joint pain and there's certainly overlap between arthritis and other inflammatory diseases like UC. My grandmother had terrible arthritis and as it tends to be more common in women, it seems likely that's the reason rheumatology in general is overlooked and understaffed. Biologics like Infliximab started out as arthritis treatements and were re-purposed as IBD treatmetns (generally more useful for UC than Crohns).

A friend who was recently diagnosed with UC (but with many other obviously AI symptoms / conditions) has managed to get himself referred to a Rheumatologist which is almost certainly a good thing.

But regardless of how good a rheumatologist might be at dealing with it, it isn't a fix for the issue that the immune system isn't treated as a first class citizen in medicine.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#249

Post by incangold » Mon, Sep 11, 2023, 7:59 PM UTC

whimsicalism wrote: post #133

andreareina wrote: post #88

Earlier quoted context omitted.

This sounds like "it's all in their head" with extra steps and disregards findings of actual physiological differences in people with ME/CFS.

The mind-body dualism is not real and mind & body symptoms can be co-productive. That said, the evidence of 'actual physiological differences in people with ME/CFS' is not very strong at all (relative to the amount of scrutiny this problem has received) and research on other hypotheses has been halted numerous times due to death threats.

This is just hand waving. There is no evidence that this thinking helps with ME. The studies have been debunked and in the UK guidelines have been updated, and clinicians are slowly catching up. The research is used as a textbook example of bad science in some universities.

You can watch the primary researchers fail to defend their work here:

https://journals.sagepub.com/toc/hpq/22/9

Funding levels for biomedical research on ME/CFS compared to biopsychosocial has been a drop in the ocean. Funding overall is absurdly low relative to disease burden https://pubmed.ncbi.nlm.nih.gov/32568148/

Regardless, there are hundreds of studies showing biological abnormalities in ME/CFS patients- dysfunctional mitochondria, changes in white/grey matter volume, hypoperfusion in the brain, SPECT scan abnormalities, VO2 max going down after exercise, whatever’s going on with Ron Davis’s nano needle study. You could go on and on- just type ME/CFS in to google scholar and skip past anything written by a UK psychiatrist.

You might be confused regarding the lack of a biomarker that’s specific enough for diagnosis. This doesn’t mean that we don’t have pathological findings, just that none of them are found in _every_ patient and also not found in patients suffering from other illnesses. This may well be because ME/CFS isn’t even a single thing.

Long Covid researchers are steadily replicating the same findings we have seen in ME/CFS, but faster because they have more funding.

Death threats do not tell us anything about whether the science is true. The allegations are often used by researchers to distract from scientific discussion of their work. Still, more on the details of those allegations here:

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

Re: Chronic fatigue syndrome may have a post-viral infection origin

#250

Post by skinkestek » Mon, Sep 11, 2023, 8:04 PM UTC

flagged24 wrote: post #94

skinkestek wrote: post #16

Earlier quoted context omitted.

Some has families that have suffered under people who faked. I cannot say the ratio, but I am sure I have seen with my own eyes how it drains parents and siblings.

Be very careful in judging if someone is faking CFS. You often only see someone when they are on a (social induced) high. Not when the crash comes 24h or even days later. The added suffering from not having a support network, or worse being accused of faking is just unreal.

It was not only this.

It was more what looks to me like psychopathic tendencies:

Eventually she was caught in all kinds of lies, because she lied so much about so many other things as well that once her sisters started talking with each others they realized it quickly.

As far as I understand she had been telling different stories to each of them and to her parents.