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Chronic fatigue syndrome may have a post-viral infection origin

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

#281

Post by ChatGTP »

tonyedgecombe wrote: post #155
thenerdhead wrote: post #115

Isn't it pretty well-known that many diseases/disorders are likely from post-viral infection? Howard Bloom who famously had CFS for decades talked about how he had a bad flu that never got better and his long recovery from it. https://medicalerrorinterviews.podbean.com/e/howard-bloom-pa... Michael J Fox who famously has Parkinson's mentioned being sick in his documentary "Still" while filming "Leo and Me" where other…

>It is beyond me how people can deny post viral syndromes. I feel part of the problem is we don't really have any good treatments for it. I know my doctor put it down as post viral tiredness but when I asked how long it might last or what I could do about it he just shrugged his shoulders.

I think it’s because we live in a world where you can’t recover. It’s all about being productive. Your doctor is saying , just get back to it.

If you got a virus and could take some time to rest then it probably wouldn’t be an issue. But I think we’re worried about viral recovery times because it affects GDP figures.

After I have a virus I like to go slow, but I’m not allowed because I have to keep up with my job.

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

#282

Post by hinkley »

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

30 years ago if you had an ulcer they'd send you to a psychiatrist.

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

#283

Post by hinkley »

gmerc wrote: post #43
mschuster91 wrote: post #33

Earlier quoted context omitted.

> If so, since 90% of people have it [1], avoid it is futile (a bit like avoiding COVID) It's not futile. Install proper HEPA air filters in trains and other public transit, provide actual ventilation in public buildings, mandate antiseptic (e.g. part copper) door handles, and especially: provide actual sick leave at work and mandate employers to send sick employees home (and while we're at it, the same for kindergar…

EBS is called the kissing disease for a reason

Unlacquered brass handles for all public spaces

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

#284

Post by hinkley »

growingkittens wrote: post #120
DrThunder wrote: post #105

Earlier quoted context omitted.

It's not a offensive to portray objective reality. People can and often do overreact and fake symptoms. This is just how it is. Why would that offend anyone? The alternative to this is burying your head in the sand and saying we should take everyone at their word. This would result in a WORSE outcome for people that actually have the issues you're so worried about because the data would be skewed. Maybe you ought to…

Let's do some thinking: collectively, we don't know enough about CFS or the human brain to make definitive statements like 'a large number are faking it.' You've confused your emotions for logic.

... while accusing others of confusing their emotions for logic.

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

#285

Post by mxmilkiib »

DoreenMichele wrote: post #267
mxmilkiib wrote: post #266

Also, in the last decade or so, it turns out like 20% of CFS folk actually have PoTS aka Postural orthostatic Tachycardia Syndrome. I finally got a PoTS diagnosis last year (along with ASD and ADHD), at 39. Lying down for 5 minutes then standing up for 10 - if the pulse gets and remains high but with a low blood pressure, that's the main diagnostic criteria. Symptoms include head rushes, gray outs, brain fog, faintin…

Things that help are certain postures, staying hydrated, increasing salt intake by x8 to help the body retain water, leggings or compression socks. That's a lot of salt. Do you also get a lot of respiratory infections?

"Intravascular volume expansion by salt and water intake: It is suggested that patients with POTS should be encouraged to have a daily oral fluid intake of up to 3 L/day and sodium chloride of up to 8 to 12 g"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10065129/#REF63 -65

Yeah, I have allergic rhinitis that is arguably chronic, though I'm managing it much better with fexofenadine these past couple of years. Dust from cleaning/being in a space that I haven't had the head to keep properly clean most of the time (ASD/PDA), pollen, and most both cats and dogs :( Some apples can make my mouth tingle in pain for hours.

My colds used to always go down to become a chest infection, like 15-+10 years ago. I've the steroid inhaler I've been more consistently taking, again more recently.

I don't smoke anymore, but I vape weed (Dynavap).

I can have an asthma attack after running 40/50m for the bus, but I can dance sober for several hours on end, so IDK.

Edit: oh yeah, I just had nasal septoplasty and turbinate reduction the other weekend, and I get the anti-scar stints out this coming Sunday, which will be fun..!

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

#286

Post by DoreenMichele »

mxmilkiib wrote: post #285
DoreenMichele wrote: post #267

Earlier quoted context omitted.

Things that help are certain postures, staying hydrated, increasing salt intake by x8 to help the body retain water, leggings or compression socks. That's a lot of salt. Do you also get a lot of respiratory infections?

"Intravascular volume expansion by salt and water intake: It is suggested that patients with POTS should be encouraged to have a daily oral fluid intake of up to 3 L/day and sodium chloride of up to 8 to 12 g" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10065129/#REF63 -65 Yeah, I have allergic rhinitis that is arguably chronic, though I'm managing it much better with fexofenadine these past couple of years. Dust fr…

Thank you.

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

#287

Post by smearth »

nradov wrote: post #272
smearth wrote: post #241

Earlier quoted context omitted.

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

The data is crap. Patient reported data is notoriously unreliable. Even data reported by clinicians is highly inconsistent between organizations so it takes a huge cleansing and normalization effort to get anything usable for clinical research. Applying ML to it tends to find a bunch of spurious correlations that aren't clinically actionable.

Thank you.

I would use fitbits with daily step count, sleep duration and heart rate variability and breaths per minute and resting heartrate and body temperature to monitor patient progress.

I can ask the questions that would partition the useful dopplegangers. If you ask great questions you get the great answers. Then you just need to group the data intelligently.

What I can’t do is be a machine learning expert and database/sys admin and front end developer and negotiator with a public health system.

I’d let the patients vote on their next steps initially. I’d also have psych questionaires to measure their personalities. That would form part of the sympton /genetics doppleganger groupings. As would genetic profiles.

For CFS there aren’t that many logical next best steps. Most things have been tried, there is a sensible order to try things.

This is the case with most chronic illnesses.

However subsets within cfs are better off trying certain treatments before others.

The better a subset responds to a next treatment then the tighter the coupling of their doppleganger to that treatment. Then when any new people match that doppleganger you can reccomend they try that treatment. You’d shift there next best treatment orders around.

As you get more and more data the treatment recommendations get more and more granular and effective.

I could hire a naturopathic md to assign the treatment steps initially.

If anyone wants to do a start up - reach out, I can find funding. Just need a team. I’m going to do it.

I appreciate you sharing your knowledge. But I think you’re assessment of the situation is wrong. I think the general consensus is wrong and I have enough energy now to fafo. Given what I feel I know it feels immoral not to.

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

#288

Post by smearth »

InSteady wrote: post #279
smearth wrote: post #241

Earlier quoted context omitted.

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

If you gave me a 300 question health questionnaire on 15 occasions, spaced by several weeks each, you would likely get at least 3,000 unique answers.

If you ask great questions you get great answers.

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

#289

Post by thereare5lights »

ChatGTP wrote: post #281
tonyedgecombe wrote: post #155

Earlier quoted context omitted.

>It is beyond me how people can deny post viral syndromes. I feel part of the problem is we don't really have any good treatments for it. I know my doctor put it down as post viral tiredness but when I asked how long it might last or what I could do about it he just shrugged his shoulders.

I think it’s because we live in a world where you can’t recover. It’s all about being productive. Your doctor is saying , just get back to it. If you got a virus and could take some time to rest then it probably wouldn’t be an issue. But I think we’re worried about viral recovery times because it affects GDP figures. After I have a virus I like to go slow, but I’m not allowed because I have to keep up with my job.

It's bizarre how your comment is being downvoted when it's a very accurate description of many modern capitalistic societies.

Especially if we're talking about America, where companies literally try to fire you if you're sick or using up too much health care because of their bottom line. It doesn't even matter if it's illegal because unless they get caught there are no consequences and even if they do get caught, the consequences are often times so pathetic that it's worth taking the hit because the savings exceed the punishment.

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

#290

Post by t0bia_s »

RoyTyrell wrote: post #176
hirako2000 wrote: post #131

Earlier quoted context omitted.

Why is it such an issue that people deny it? Viruses can cause organ tissue damages, that's enough for me to believe a virus can cause all sort of "syndromes" I'm not on the denier side but harass me with fear, threats, and free movement mandates and I will deny that syndromes even exist.

My girlfriend's sister suffers from Long Covid for going on 2yrs now. Some of the problems she had early on is that most doctors wrote her off as either lying or anxiety. More than one ER doc said there's no way that Covid could ever cause lasting symptoms other than lung damage, which she didn't have, so it's likely just anxiety. There was one DO she saw, during an admit for tachycardia, who said that he believed th…

Is she vaccinated with mRNA?
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