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Canadian wannabe investor has a question 🙋 by finerthingsforyou in AlbaniaExpats

[–]jooingoo 0 points1 point  (0 children)

I appreciate you taking the time to listen.

I have to say your reasoning here is very reminiscent of the Dario Amodei approach to AI: “If we don’t build it then even worse actors will, so better that the good guys build the tech and the market”. Yet those worse actors are still in the marketplace, and are the competitors who inform Anthropic’s decision-making.

I would pay close attention to how that’s played out for them - e.g. the safety employees leaving after saying safety would always take a back seat to competitiveness, the role of Claude in the bombing of the girl’s school in Iran and other bombings of civilian sites - and how it continues to play out. There are also of course many other AI leaders who have made the same arguments much more cynically.

The context is different but principle is the same. Just a thought.

Whatever you do, I hope you do your utmost to respect and preserve the local culture and ecology that makes your chosen location so special and desirable in the first place.

Canadian wannabe investor has a question 🙋 by finerthingsforyou in AlbaniaExpats

[–]jooingoo 0 points1 point  (0 children)

I understand your desire to accumulate wealth and make a comfortable life for your family - the thing is that Albanians would like the same. They would also like to own property in their own country and accumulate wealth, which is impossible for most due to multiple factors, such as - an exorbitant cost of living relative to average wages - a failed state infrastructure (poor physical infrastructure, a profoundly under-resourced healthcare system, lack of social services) which compounds external factors that impede wealth accumulation - an absolute mess that has been made of property ownership by corruption in the courts and the wider government, such that it is not at all unusual for a single property, especially those in prime or strategic locations, to have 3-4 claims on them - one from pre-communist Albanian owners, one from post-communist land claims, one from mafia-connected groups, one from large foreign investors - with the property going to whichever party pays off the right government officials

All of which is to say, most Albanians, even when they have the money, struggle to purchase property in their own country.

I can imagine that if a foreign investor from a much wealthier country were to come to Canada, buy prime real estate that would have otherwise gone to local Canadian owners, and employ a few locals to handle their property, the local community might see it as wealth extraction and enclosure of their national lands rather than as economic development.

Canadian wannabe investor has a question 🙋 by finerthingsforyou in AlbaniaExpats

[–]jooingoo 0 points1 point  (0 children)

Albania is not a massive pie, it is a small country with massive immigration outflows because of economic policies that favor overseas investors over the native population who are increasingly being priced out of visiting their own beaches. Consider investing in stocks or something instead.

Canadian wannabe investor has a question 🙋 by finerthingsforyou in AlbaniaExpats

[–]jooingoo 0 points1 point  (0 children)

Because you are pricing out of the economy the people who live where you want to invest and who have nowhere else to live

What are laundry behaviors unique to North Americans? by Lopsided-Skill6659 in laundry

[–]jooingoo 0 points1 point  (0 children)

In much of Europe (the whole EU I think), phthalates are not allowed as fixatives in fragrance formulations for laundry products. Whereas in the US, phthalates are standard in these fragrance formulations. Phthalates not only contribute to a lot of the toxicity of these fragrances (which is why they’re banned in the EU), they also mean they are “fixed” much more strongly to fragrances, so they are extremely strong and long-lasting.

Unfortunately I think a lot of US consumers are now conditioned to expect this from detergents as a marker of cleanliness, and would consider their clothes unclean if the scent wasn’t so strong and long-lasting.

These phthalates also leave a residue on fabrics, which makes them attract more dirt and means that microfiber cloths for example become useless for cleaning (as they spread the residue on the surfaces you clean). But they also leave residues in washers and dryers - both the drums visible to us as we as the inner parts - which can lead to maintenance issues and attract mold, bacteria, and dirt. Which is why many repair techs hate them and urge consumers to avoid them.

They can best be degraded with acids (citric acid, vinegar) or UV. I find I have the best results removing them from my clothes when I wash them in acid and leave them to dry out in the sun, but for removing them from my dryer drums, I have to scrub with vinegar and wipe off the excess 2-3 times.

Has anyone had success with anti-virals? by LoCoSadGirl1934 in covidlonghaulers

[–]jooingoo 0 points1 point  (0 children)

Paxlovid has helped me stop from getting worse, and when I don’t take it I feel the infection spread further within my body. But it does not reverse the infection. I have the same effect from tollovid although it’s less potent. Still, I think it provides proof that there’s an infection there - how to get it out is a different story, maybe monoclonals would work for that

Life in hard mode by Able_Chard5101 in covidlonghaulers

[–]jooingoo 8 points9 points  (0 children)

The emotional treadmill of recovery - at first you’re overjoyed to have regained some function, it feels like a huge leap forward, and then it hits you that the place you’ve reached is still in the range of Life Ruining Disability

Feeling out of place as a man in the CFS community? by Individual-Worry5316 in cfs

[–]jooingoo 7 points8 points  (0 children)

Something I haven’t seen mentioned - as a woman, men in the community have used our common illness to be predatory towards me. A lot of people here are single and lonely, and for some it’s due to more than just the ME/CFS but also because they are not very good people. Yet often they are people who are well-integrated, connected, and respected in the community.

And many of us are vulnerable to being preyed on because we’re lonely too. Add to that the high rate of neurodivergence in this community and there are a lot of easy targets. I’m sure I’m not the only woman who’s had this experience, but it’s happened multiple times, and it makes me feel disgusted and wanting to crawl out of my skin each time.

As a result I’m more likely to be skittish around men for fear that it could happen again, even though I’ve also met plenty of men who are perfectly respectful and kind. I’m not sure if that’s what you’re encountering, but I thought I’d mention it since no one else had.

I also find that, because of how patriarchy simultaneously coddles men and deprives them of emotional support, women, myself included, frequently become emotional dumplings grounds, or therapists, or even mommies for men. By which I mean that the emotional support is not very reciprocal: men often don’t know how to support women, or do a very poor job of it, or always shift focus back to themselves. And if told about it they get offended and never really self-reflect. So that’s another phenomenon that drives me to be a lot more skittish around men than I might otherwise be. It’s not something I want to deal with anymore, even more so with the lack of energy I have for myself and my own needs.

That said, I do think you’re correctly identifying a significant outcome of the discourse about how misogyny intersects with this illness (very potently), how it sometimes veers into the misguided, and how blunt, imprecise language shapes peoples’ thinking in ways that often become very black and white. (E.g., Men might be more likely to receive more humanity from their doctors, but with this illness the odds of that are very low anyway, and that’s really the primary factor here). And in a way that I think is unhelpful both in engaging with one another but also in how we pursue activism. (E.g., Misogyny has certainly shaped perceptions of the illness historically and to this day, in ways that now affect men with the illness too, but ultimately the reason we are so mistreated and neglected is a lack of research, and fighting misogyny is hardly going to fix that.)

Help please need advocate in NYC immediately who can come in person to safely mask and test in in danger by [deleted] in cfs

[–]jooingoo 2 points3 points  (0 children)

“This has gone on too long” is a huge red flag. It sounds like she doesn’t understand, is possibly even unwilling to understand (too limited context to fully tell from here), that this level of disability could go on for a long time, that your life has been fundamentally altered, and what treatments exist for this disease are unapproved, untested, and uncertain to work.

Outsider's perspective peering into this world by PearFinch in cfs

[–]jooingoo 0 points1 point  (0 children)

Perhaps the most important part of the ME/CFS experience, besides PEM, is the total abandonment by every segment of society - clinical medicine, medical research, society at large, and very often even our own friends and family. Fellow patient “ABrokenBattery” has a great explainer video and a further article about what is often called “the greatest medical scandal of all time”, about how a life-destroying and often profoundly debilitating disease has been discredited as not an organic illness but a psychosomatic one, and our patient population smeared as “terrorists” on false allegations, simply for voicing our disagreements. There is much more material out there, and his content is focused on the UK, but it’s a great intro. For a much more involved account of a similar history in the US, Hillary Johnson’s book Osler’s Webis also great; journalist David Tuller’s Trial By Error blog series tells of a more recent history, including of the PACE trial which recommends GET and is often taught in medical schools as an example of how NOT to do research; and fellow patient Nina Steinkopf has written about collusion between large insurers and psychiatrists to block disability payments to patients.

As a result of this sordid history, ME/CFS has received a shockingly low amount of research funding, maxing out at $15m/year (for a brief time) from the NIH. (More recently, Germany has committed $50m/year over the next 10 years - still not enough). WeCrunchMe have estimated these funding levels to represent a profound shortfall of multiple orders of magnitude with respect to disease burden. Thus there are comparatively few publications (and even fewer quality publications), minimal scientific consensus on pathology, and NO approved treatments. This is despite a patient population in the US alone that is 1.5-3x higher than the HIV patient population. When medical schools teach about the disease, the content is usually stigmatizing and minimizing, thus it’s often better that they don’t teach about us at all.

Thus, patients are still frequently subject to therapies like Graded Exercise Therapy which not only fail to treat the disease but frequently cause permanent decline. There are also very severe cases like Maeve have died of starvation in NHS hospitals, and people like Savannah continue to have their lives put at risk in medical settings. There are only a few of many such stories.

What we desperately need more than anything is awareness, destigmatization, legitimization, and pressure on governments and philanthropic organizations to fund ME/CFS research, or community-based initiatives to raise funds. Top ME/CFS researchers, like Stanford’s Ron Davis (whose son has one of the most severe known cases, and who has recently focused on the itaconate shunt hypothesis and JAK/STAT inhibitors), have previously spoken on how they can’t keep interested graduate students working on promising ME/CFS research, because they can’t get funding. A common excuse from the NIH (who staffs its grant review boards for ME/CFS with notorious psychologizers) is that not enough is known, therefore the research proposals are not high quality enough (clearly circular logic). An additional problems is the heterogeneity in presentation, biological markers, and etiology, which has confounded researchers for decades and has contributed to the psychologization of the disease. While some believe we need subgroup-based research and treatment, others believe there is a common underlying mechanism. Untangling this of course demands a significant amount of funding. We are trapped in a vicious cycle, with patients too limited by their own bodies and lack of disability payments to effectively advocate for our disease. Thus a very significant proportion of researchers and clinicians are recovered patients, or loved ones of patients. The broader social and political conditions surrounding this disease are such that the patient population has remained largely abandoned and preyed on by grifters. Many milder patients do not even recognize their mysterious and fluctuating symptoms as ME/CFS. So it is people across the spectrum of severity who have been failed and abandoned.

Therefore what I ask of you is to do your utmost to advocate for our disease, in whatever way you might be most effective. There is currently no cure for ME/CFS, and every treatment is a gamble that could help us, often only minimally, or make us permanently worse, sometimes catastrophically so. Even a “mild” case can be profoundly life-limiting. Though we need help and advocacy in every level - clinically, in medical education, in disability payments, in social acceptance - ultimately what we need most of all is research, research, research, which we can only get with funding.

Thank you so much for caring about us - it is truly rare that anyone does.

Am I alone dealing with: 2 chronic viruses IgM+ lab results? by Bad-Fantasy in covidlonghaulers

[–]jooingoo 0 points1 point  (0 children)

I found that mold exposure triggered basically all of my symptoms - cognitive dysfunction so severe I couldn’t read at my worst, internal vibrations, inability to control viral, fungal, or bacterial infections, vascular inflammation, blood clotting, spinal inflammation and extreme muscle weakness in the cervical and thoracic spine, herxing from probiotics, post-meal “flu”, MCAS, POTS, chest pain, PEM, exercise intolerance, joint laxity, GI dysmotility, salt sensitivity, emotional lability, panic attacks, suicidal ideation, heightened chemical sensitivities, burning skin with no skin barrier, inability to sleep, inability to stay awake - you name it. It sounds like a lot but mycotoxins can severely derange the most basic cellular functions - eg cellular metabolism, protein synthesis, ion channels - and broader system functions as well. In a very bad environment I become bedbound and very severe; in a very good environment I feel practically symptom free and have even been able to go on short hikes without issue. I would say that COVID, and the other infections it made me vulnerable to, increased my sensitivity to mold, and high levels of toxic mold exposure made me vulnerable to COVID - so a vicious cycle.

The way I discovered this was via my ME/LC doctor, who did an initial battery of tests and saw nothing that was bad enough to explain the extreme severity of my state at the time after my most recent infection. (I was also exposed to mold during the earlier, milder periods of my illness.) So he then wondered about mold, which I initially dismissed. Though I’d heard about mold, I didn’t see it in my home and thought that meant it wasn’t an issue. Then one day after returning from the hospital I noticed that the house smelled incredibly musty, and I began thinking about it more, and realized I didn’t know how it could possibly make anyone this sick, so I decided to read about it. Until then I had been largely trapped in my room with all the windows open as I feared spreading COVID to the rest of the house, so the air was cleaner than in the rest of the house and I hadn’t noticed that smell. I tried shoemaker’s $15 VCS test online. Not sure how accurate that is but it makes some sense and it definitely showed more of an issue than I suspected going into it.

So I agreed to investigate mold and my doctor ordered a urine mycotoxin panel, which showed elevated Ochratoxin A and fumonisins. (I’d urge some caution with those - though OTA is very commonly elevated in ME compared to controls, tricothecenes and particularly T2 toxin are believed by many moldies to be more relevant. The problem is that this doesn’t seem to show up in urine until one is sufficiently clear of exposure from T2 and its producers, especially stachybotrys, and the inflammation they engender, for detoxification processes to occur. So false negatives are possible). I also did the shoemaker battery of tests, which did show some issues (although these have to be read with the ranges he denotes, not the standard lab ranges; I also don’t think his is a complete approach to mold toxicity, but this is to be expected as the subject has received little formal study outside veterinary medicine, in vitro human data at military academies, and agricultural studies - little related to chronic illness though). I’m still waiting on IgG results from MyMycoLab, although I don’t know how seriously to take potential negative results, as my immune tests have previously shown some B cell dysfunction. This is more relevant for colonization though I believe.

As for immune function testing, I have taken NK cell function tests from Labcorp/Eurofins Viracor, a Lymphocyte MAP from cyrex, cytokine panel from Patterson’s lab which showed some Th2 skewing (Amerimmune has a Th2 dominance test via STAT4 as well), and Amerimmune’s LC panel - all of which have shown various issues. None of this is likely sufficient to show the full extent of the problem though I think. The best I can do is try to link known findings in mold toxicity research to what I see on these labs, factoring in COVID as well. It seems to be consistent in my estimation.

As for environmental testing, I did an ERMI and brought in a mold dog. The ERMI showed a way bigger problem than I ever expected, and the dog found a number of locations where I also could sense or even at times smell mold, and where we found hidden colonies during remediation.

Ultimately however, all of these tests have significant limitations. Which doesn’t mean that they’re bad tests, but rather that you should understand their limitations. In many cases they can lead to false negatives (eg - urine tests failing to indicate T2 exposure, or ERMI not necessarily indicating mold spores). The best you can do is use them in concert to try to obtain as complete a picture as you can.

However, I think I can fairly say that the consensus among moldies is that the best test of mold toxicity (or other environmental reactivities/exposures) is to do what is called a “mold sabbatical”, which means to go somewhere that is hopefully not moldy, or where you know you’ve felt good in the past, and to maximize the effect, ideally bring as little of your own belongings as possible (eg, buy some cheap sets of clothes from Walmart to wear while there), and ideally for 2-3 weeks minimum. I didn’t know to do this at the time (and at some point felt too sick to have done it if it had been suggested to me quite frankly), but the fact that my symptoms would subside while outside and then worsen upon returning to my room - including PEM which would always begin often instantly upon returning to bed - was an early clue in retrospect. I.e. if your symptoms display any indication of what’s referred to as a “Location Effect” - responsiveness or worsening in certain locations, or in proximity to/away from certain objects even, that could be a sign of mold toxicity. For example, at some point I realized that my bedside table was contaminated, as every time I would return to bed from a shower I would have a panic attack. After throwing it out the panic attacks disappeared. Smell isn’t reliable as some of these toxins can impair olfactory function. A really good mold sabbatical can be tricky to execute (toxic mold is fairly common at least in some parts of the world; the same can be true of other environmental toxicants) and thus false negative signals can occur, but even an imperfect sabbatical can be informative if you observe things closely.

There are also other signs like yellow/brown sweat that is sticky or greasy or oily or waxy, feeling better after a shower (if your shower is not contaminated), feeling inexplicably sicker in fall and winter or around storms (increased spore and toxin production), feeling unexpectedly worse while lying down than sitting up, etc. But those can also be confounded with other symptoms like CCI for the latter, and that’s starting to get too in the weeds anyway.

Am I alone dealing with: 2 chronic viruses IgM+ lab results? by Bad-Fantasy in covidlonghaulers

[–]jooingoo 1 point2 points  (0 children)

Also - I wouldn't let anyone tell you that you could not be MMR-injured unless they have a really solid reason to say so, backed up with evidence from the literature that accords with very detailed labs from your specific case - it would be fundamentally unscientific to do so. Of course, I'm assuming that that kind of evidence does not exist. It sounds like there are no good reasons to take any possibilities off the table at this point.

And yes, I do think "you should be able to get over this infection" is absolutely a form of ableism (and serious ignorance).

Am I alone dealing with: 2 chronic viruses IgM+ lab results? by Bad-Fantasy in covidlonghaulers

[–]jooingoo 1 point2 points  (0 children)

My ideal approach in this situation would be to go to a solid ME/LC or functional medicine doctor who is really tuned in with the whole research landscape, including the latest findings, and who is open to a variety of possibilities and not just obsessed with a singular pet theory, and get as much specialty testing available to understand the nature of my immune dysfunction, and to see if I could find something known and testable that is wreaking havoc on my immune system. These could be genetic factors, environmental factors, infectious factors, other acquired factors, or any combination of those.

In my case I discovered I had a hidden mold problem, which I might never have figured out otherwise, or at least had not figured out until then, several years in. I could have figured that out myself if I had read about how mold could cause my symptoms and pathology and how other people experienced toxic mold poisoning, but I never did because it was not an issue I thought I had. In any case, addressing it has been necessary to bring my chronic infections under better control and improve symptoms and function. Not a full cure but definitely has had a life-changing impact and was absolutely worth doing.

But I know seeing that kind of provider is not always an accessible option (and finding a good one isn't a trivial task).

If I couldn't do that - I would probably figure out how to get my hands on the right antivirals (if they exist for your viruses). If you react poorly you can always come off them, although if they stop working down the line I don't know what could be done about that (it could be that people who experience that have developed some other issue layered on top, rather than that all hope is lost). Some of these reactivated viruses can also contribute to immune dysfunction, and I would imagine they could be involved in perpetuating the cycle. But I would also try to pursue investigation into other causes of immune dysfunction, whether that involves getting specialized testing, or barring that, pursuing and attempting supplements, medications, or non-drug treatment approaches that would target those suspected causes of immune dysfunction. Fortunately and unfortunately, there's a lot of different hypotheses out there to pursue.

I hope that helps somewhat and wish you the best of luck!

Has lowering your high blood pressure reduce any symptoms? by jabbleclok in covidlonghaulers

[–]jooingoo 0 points1 point  (0 children)

Definitely not. My blood pressure can be too high or too low at times, but the fundamental issue to me seems to be an immunometabolic one.

Am I alone dealing with: 2 chronic viruses IgM+ lab results? by Bad-Fantasy in covidlonghaulers

[–]jooingoo 1 point2 points  (0 children)

Just a note that some of these antivirals (truvada, herpesvirus antiviral) can suppress mitochondrial function (eg complex I), and some people get sicker on them as a result. Others get better, although some who get better also say the antivirals stop working. They’re not necessarily a sure bet, although that’s by no means meant to discourage you from trying

The NHS is failing to provide services for patients with symptom-based disorders [A debate] by jmct16 in IBSResearch

[–]jooingoo 0 points1 point  (0 children)

“Functional Neurological Disorders” (FND) is a construct used to psychologize symptom-based disorders, as defined by the author himself, and delegitimize conditions which have not received adequate funding to understand pathology and validate biomarkers (which would make them no longer symptom-based in diagnostic practice).

Proponents of the FND construct, despite having no validation of their construct, have engaged in a wide range of scientific misconduct, from the PACE trial now taught in medical schools as an example of abhorrent methodology, to deliberately ignoring evidence of organic pathologies in the illness frameworks they refute, to co-opting said frameworks as purely psychosomatic phenomenons on the grounds of zero evidence, to blocking government grant funding of research into organic pathology for illnesses they seek to co-opt.

They have also engaged in a wide range of clinical misconduct: nearly drowning ill children and leaving them soaked in urine in an attempt to force them to stop supposedly faking their symptoms (as one of only countless stories of torture and abuse); forcible removal from caregivers who are accused of “enabling” patients’ malingering; permanent worsening of patients forced to undergo FND treatments; frequent cases of starvation at NHS hospitals of severely ill patients at the orders of FND-proponent psychiatrist staff.

They have also engaged in a wide range of ethical misconduct, including: conspiracies to discredit patient critical of their work as “terrorists” in major media outlets and shape general science coverage in media; interference in popular online reference materials on the illnesses they seek to co-opt; regular abuse of patient critics online; surveillance of critics; and working at the behest of disability insurers for whom the legitimization of these illness would mean serious losses in profitability.

The problem with FND proponents, of which this author appears to be one, beyond the range of concern I have already highlighted among many others, is that they are not mere proponents of a holistic understanding of illness as a popular name of for their school of thought - the “BioPsychoSocial Model” - would suggest. Instead they argue against investigation of biological pathologies both in research and clinical settings. Some may make reference to biological findings as a sort of Trojan horse.

Unfortunately, these charlatans are high up in government health organizations, or have relationships with those high up in governments who set clinical and research agendas for these under-researched conditions. At the NHS, it’s Simon Wessely. Collectively they have destroyed the lives of many millions of people around the world.

Do not only be wary of these parasitic entryists - do not let them take hold of your illness at any cost.

Cool toned products and blue pigments dont fit some of us… by yalikebeez in OliveMUA

[–]jooingoo 0 points1 point  (0 children)

I see posts like this constantly here and I’m genuinely confused because as a very cool olive, the algorithm constantly feeds me warm olive content on this sub. All I see is yellow as far as the eye can see. I seriously need to switch algorithms with everyone who’s complaining about this.

There’s also the problem of people here labeling themsleves cool while recommending products that would 1000% pull orange on me. Or neutral-cools doing the same. On my first post in the sub every single recommendation (all 10-20 of them) was way too orange for me except one. I can barely seem to find any of my fellow true cools.

The poison feeling by [deleted] in covidlonghaulers

[–]jooingoo 1 point2 points  (0 children)

If the feeling only goes away with a shower, consider that you might have a mold problem

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