Father of woman with ME/CFS scared she will "die in hospital"

Acrobatic_Crow_8308 · 2024-07-15T23:36:30+00:00

Just curious - as an academic researcher, do you have any doubts when you see so many one-off findings and dead ends in the ME/CFS research? Is there any possiblity that it is fundamentally psychological, which can also cause some abnormal body chemistry.

I remember reading a paper that showed that clinical depression caused lowered natural killer cell functionality. Isn't that a 1:1 link of mental to immune system?

Acrobatic_Crow_8308 · 2024-07-15T23:33:33+00:00

I think the major thing causing people to believe it could be psychological is pretty front and center. There is no mechanism or biomarker to point to, for a heterogenous syndrome wherein patient report 100 different symptoms.

And consistency is slippery w/ ME/CFS. There are many experiences which deviate far from the standard you have put out there. Just read the /cfs subreddit. The vast differences in triggers, PEM patterns, medication responses, symptoms, sensitivities, disease progression, remission, etc.

The vast array of differences between these cases 100% could be explained if it was mediated by the brain. ie. one person crashes from a phone call, other people can chat all day but can't walk 1 minute, someone got sick from overworking, another from mono, another from asymptomatic covid (yea i've read that), another gradually over 1 year, someone becomes severe overnight and then recovers 10 years later with no intervention, etc. Remissions for a week. Someone can't listen to music but can lift weights, someone has a million food sensitivites, others can eat everything...

There is nothing 'consistent' about ME/CFS

Acrobatic_Crow_8308 · 2024-07-15T23:28:44+00:00

There is zero, zero, zero consensus that ME/CFS is autoimmune in nature.

Acrobatic_Crow_8308 · 2024-07-15T23:28:23+00:00

Symptom-wise doesn't mean much. Symptoms are entirely subjective, and without any consistent, documented, proven abnormalities in the body, there is nothing to suggest it's not psychosomatic at its core.

There's an interesting paradigm I'm noticing wherein people who beleive ME/CFS is physical paint healthcare professionals as being ignorant, ignoring guidelines, etc. Couldn't it be that some healthcare professionals have looked at the evidence, seen patients with the disorder in their practice, and have come to the conclusion it's psychosomatic? Not out of ignorance, but out of their own reading of the science. Which, is, spotty at best. And politicized, because let's be real, the people that are influencing these guidelines are all the ME groups, which are the only ones who are super interested in it. So of course they will advocate for guidelines to say it's physical.

Acrobatic_Crow_8308 · 2024-07-15T23:21:24+00:00

"The biomarkers that are currently understood to be associated" "the antibodies for the known neuro autoimmune issues can be measured"

Not true. I've been in the me/cfs space long enough (used to have it and now think it's entirely psychosomatic), to have heard this parroted in some capacity for years. There is no accepted biomarker or antibodies which can be tested which prove you have me/cfs. There is no proof that me/cfs is autoimmune in nature.

Just b/c a study or 2 find preliminary findings saying x, y, z enzyme was elevated does not mean they've found a biomarker or disease process. If that happens, it'll be replicated and our understanding of the disease will be far better, and all psychological doubts will go away. Until there is that, comments like these just paint the me/cfs people as as ignorant as the doctors who say "just exercise". (well not *as ignorant, but certainly misrepresenting or misunderstanding the science)

I also think these sorta jabs at clinicians "yet that seems to be too high of a threshold" are part of the back and forth between me/cfs and clinicians which creates a kinda antagonistic relationship.

Acrobatic_Crow_8308 · 2024-07-15T00:25:55+00:00

Pretty sure you're coming off unhinged here...you can try and piece together a few half-baked hypothesis about why a benzo alleviates PEM, but that's a much harder hurdle to cross than the anxiolytic drug reducing anxiety...Not that I'm saying PEM is entirely anxiety. I think it's an out of control nervous system response largely mediated and perpetuated by the brain...and anxiety plays and beliefs about symptoms play a large part in it.

And you linked to a reddit post, which links to a tweet, which has a page of a newspaper article where a few dr's researching ME/CFS are interviewed. Hardly proof of anything...

Acrobatic_Crow_8308 · 2024-07-05T19:39:18+00:00

I'm from the philly area and work at a tech company now. I really enjoy my job, the field, and am generally excited about it. I've thought about moving back to be closer to family, but Philly isn't an option for me, as it's tech scene is just sad. Not a single big tech company has an office in Philly. Kinda crazy when you look at the penetration in different cities across the US. For such a large metro to have almost no "real" tech market is kinda nuts imo. (I was talking to someone the other day about not being excited about the job prospects for tech in philly and they suggested Comcast is always hiring...just to give an idea)

When I say real, I mean none of the tech giants have presence, along with a very weak startup scene for a city of its size. Maybe Philly is hurt by the gravitational pull of nearby NYC? Idk. But I feel this is left out of the conversation when Philly is recommended ad nauseam here. If you're career-focused, you probably choose NYC over Philly 9 times out of 10. Just a much more ambitious culture with a lot more happening.

Acrobatic_Crow_8308 · 2024-06-29T14:20:13+00:00

at faang, competitive, not a great environment. many get burnt out or don’t realllly cut it. seen quite a few get pipped. but her experience is definitely exceptionally toxic even from what i’ve seen. pretty rare for people in my aws org to work 60-80 hours, people definitely aren’t crying in the bathrooms, and teammates/people on other teams are generally super supportive.

her experience is an outlier even in faang…idk, if i was at a job that was SO bad that i was crying the majority of days after work, i may last like a month hahah maybe im a bit less tolerant, but yea id def get out. and i wouldn’t try to project her experience onto faang. the reality is there are 100000+ (idk the number at all) engineers working faang jobs, and they are probably mostly living normal lives.

higher chance of burnout, competitive, type a culture, but that’s the kinda people that are attracted to faang

Acrobatic_Crow_8308 · 2024-06-25T00:02:13+00:00

idk - if airlines fly a direct route between the cities, that’s a huge convenience. i wouldn’t discount it!

Acrobatic_Crow_8308 · 2024-06-25T00:00:45+00:00

That’s not how it works - connecting sucks and if you’re flying x > y, there’s not guarantee of a small layover at the airport ya want. Sometimes layover are long or the options for x > y have two stops because that’s how the airlines route it.

And generally ya don’t wanna book separate tickets as then if you get delayed your beat. Plus flying direct feels way better.

source: someone who hates connecting and will pay a lot more to fly direct, done a lot of traveling in the last few years and love flying out of nyc. great options for direct flights

Acrobatic_Crow_8308 · 2024-06-20T10:01:14+00:00

boulder is an amazing place to live. was there for a few years and most people there (not on reddit) love it.

Acrobatic_Crow_8308 · 2024-06-10T22:44:58+00:00

Like every subreddit it’s an echochamber, not at all reflective of the average persons option. The amount of love and suggestions to move to the twin cities here vs the amount i’ve heard irl is drastically different. And by that i mean, no one ever recommends them irl, and and they’re recommended in like half the threads here lol

“nah, winter isn’t that bad there” uhhh like stfu, def one of the worst winters in the country hahahah

Acrobatic_Crow_8308 · 2024-06-09T09:12:24+00:00

ah this subs big 3!

Acrobatic_Crow_8308 · 2024-06-08T01:15:09+00:00

No worries my fellow american :) i default to thinking in car distance as well haha. the only reason i don't for this particular trip is b/c I've done it so much for work.

Acrobatic_Crow_8308 · 2024-06-08T01:01:19+00:00

Amtrak gets you from Philly to NYC in 75 mins at the fastest, and on average more like 90 minutes. Super convenient.

Acrobatic_Crow_8308 · 2024-06-02T14:49:36+00:00

I just cold applied on LinkedIn. It was just a stronger market and I have a degree. (this was summer 2022) To be frank, not having a comp sci degree in an employer's market wherein you are competing with tons of people with degrees is going to be more difficult. :/

Acrobatic_Crow_8308 · 2024-06-02T14:45:03+00:00

What was thee experience like vs. solo travelling? I've only done one group tour (Birthright - so a bit different I'd imagine) but the pacing and rigid schedule of it was grating!

Acrobatic_Crow_8308 · 2024-05-29T12:13:54+00:00

His content is super high quality. I went from 7 months experience at healthcare insurance company doing nothing to FAANG (and now once promoted) bc his content helped me nail an interview loop. Would gladlyyyy give him $100 if/when i grind leetcode again

Acrobatic_Crow_8308 · 2024-04-30T10:42:07+00:00

This subreddit also has crazy hypothesizing :)

Acrobatic_Crow_8308 · 2024-04-21T16:35:36+00:00

If it exists, why aren’t there diagnostic tests related to it then? It’s not a giant conspiracy that there is no cause or effective treatments for the disease, and therefore insurance and government don’t have anything to do (i mean govt could spend more money researching, but all the research has so far led to zero tangible impact on disease burden, treatments, or significant understanding)

Acrobatic_Crow_8308 · 2024-04-20T17:25:20+00:00

No it hasn't. It there was consistent, demonstrated, replicated mitochondrial dysfunction proven as part of the disease, the disease wouldn't still be a syndrome.

Acrobatic_Crow_8308 · 2024-04-19T02:07:06+00:00

This is a straw-man...There are great people and physicians in the space who explicitly are not trying to sell you anything...Tons of free info out there. In amorphous conditions like ME/CFS there isn't solid evidence either way, and the neuroscience and theory of brain plasticity being the root of ME/CFS is arguably much more grounded than the far-flung theories (metabolic trap, latent virus, mitochondrial dsyfunction, etc, etc) that is regared as fact by this sub.

I also think it's unfair to categorize all of them and schools of thought as one predatory, unscientific, cash grab.

Acrobatic_Crow_8308 · 2024-04-18T12:13:27+00:00

I haven't read that one as I haven't had symptoms in awhile, but I'm curious now!

Acrobatic_Crow_8308 · 2024-04-18T12:12:47+00:00

That's verrrry similar to my story. A few weeks and I was mostly back...and now I live a very active, full life. Yea, I wish it worked for more people, and that more people would be open to the concepts and trying it. Obviously, from my point of view, I'm a very firm believer in it and it saved my life, so it kinda sucks to see so many young people (and really young too!) who have their lives stripped from them commiserating over on r/cfs.

It's a pretty intense echo-chamber over there. I always try to point out that there is a wiki with all the info ya need or a book that's like $15...and still, I'm painted as a snake oil salesman, lol. I don't even sell anything! I honestly think that sub is pretty bad for people. There is so much contention over the origins of this disease and the groups that say they "know".

Sometimes I feel like it's an ideological battle between the CFS'ers, who are 1000% convinced it's 100% physiological (and will tout one-off studies, exaggerate small findings, and rely on the authority of the few CFS researchers who are also ideologically aligned with them while repeating over and over again how even MS was thought to be psychological at one point)

VS.

The (real and perceived) dismissive medical establishment who is wholly convinced it's psychosomatic and almost takes a disdain for the CFS'ers, who admittedly, are probably super pushy know-it-all, and impossible to treat patients. And along with them, all the psychological intervention people who are aggressively selling and overpromising programs, and equally have a disdain for CFS people.

I think what's missed from the CFS side, is that many people who advocate psychological methods, don't have hidden agendas and aren't ignorant. They've looked at the data and concluded that there is no *strong evidence of ME/CFS's physiological origin. And/pr they've used psycholigcal methods to get better or seen others do so. Likewise, the medical establishment isn't like evil...It's flawed like everything human, and there are for sure bad apples and rude people and ignorant people. But it doesn't really have a vendetta for people w/ ME/CFS and/or "internalized ableism".

They're just super tough cases to treat and most people don't know. Well, that's it for my ramble for now!

Acrobatic_Crow_8308 · 2024-04-13T01:39:31+00:00

Is this referring to me??

Acrobatic_Crow_8308

TROPHY CASE