If you felt improvements with semiglutide only after many months, how long did the other trials last? It sounds like you went through hundreds of trials. Did they all went on for many months? When did you determine that a drug wasn't effective and abort the trial? How come you didn't abort the semiglutide trial earlier?
Because I started at such low dose 0.025mg and ramped slowly I didn’t expect to see much of an effect until I got to more normal doses so I was unusually patient with it. Additionally extended water fasting (>5 days) was the only thing helping my headaches so I was focusing on ways to emulate this effect without an unmaintainable amount of fasting. I also had uncontrollable weight gain so I figured that was either related, or if not it would still help to lose weight anyway.
Most of the stuff I’ve tried that worked usually has an immediate or overnight effect. Notably Low Dose Naltrexone was overnight, Low Dose Abilify was near immediate. I believe this is due to their immunomodulator properties. So I studied psychopharmacology and focused in on finding weaker ligands than typical as a way to try and safely modulate my immune system. I landed on Modafinil in the morning and Amitryptiline at night, both off label treatments for the probably related dysautonomia.
The N of 1 with many overlapping signals and medications was of course very noisy but I treated it like a ML optimization problem. I could tell it was likely beneficial within the first week even with the small dose. I probably could have statistically determined it was working within a few months but I was distracted by work so it took a little longer to be sure.
I'm pretty sure there is no diagnostic test for ME/CFS. What are you referring to?
Also I don't understand how semaglutide did help you while you're at the same time part of a minority risk group with a hypersensitivity to it. Isn't that a contradiction?
Yes, sensitivity at over 10x normal, so I just took 10x less. I’m taking a more normal dose now after 4 years and I believe I have become desensitized as my body normalized. Other seemingly unrelated aspects also normalized such as thyroid, testosterone, and neutrophils also improved. I was taking medication for these and have been able to stop taking them. I am assuming a lack of GLP1-As to begin with caused the receptors become more sensitive to it. When I started there was no anecdotal information available just theory, in the 4 years since many people have now had very similar experiences including hypersensitivity. (https://www.healthrising.org/blog/2025/11/03/glp-1-agonist-m...)
There are now a number of very definitive tests, most related to immune system profiling. Prof. Ron Davis has some good research and has shown that plasma from someone with ME/CFS when combined with normal red blood cells will greatly diminish the ability for red blood cells to handle stress (pumping out salt).
I think I would need to see testing on a control group of housebound patients with other conditions to believe this. It's easy for ME testing to pick up markers for being housebound and limited exercise for an extended period of time.
You sound exactly like the tens of doctors that misdiagnosed my aunt (who passed away through euthanasia after her symptoms got too bad to live with late last year).
I understand that the symptoms of ME/CFS might be similar to being obese/depressed or housebound, but the problem is that doctors often jump to that conclusion too quickly and don’t take efforts to diagnose ME/CFS leading to situations like my aunt’s. She was also obese and depressed and has been struggling with those symptoms for about 30 years and has constantly been misdiagnosed the entire time because doctors didn’t figure out that those were symptoms of ME/CFS and not two unrelated conditions coming from two different diagnoses.
Thanks to long-covid putting the symptoms of ME/CFS on the forefront lately, there’s finally been some much needed research into the disease and people like my aunt finally get the diagnosis they should have been getting many years ago.
Sorry to hear about your aunt. My condolences. I think your misinterpreted my intent, I would dearly love a good diagnostic test for ME/CFS and agree research has been hugely underfunded.
I have followed closely the research for many years and there has been false promise of good diagnostic tests previously. What I'm arguing for is that we need a test that is specific for ME/CFS. E.g. it will test positive for a patient with ME/CFS regardless of they are obese or not, but more importantly it will not test positive for everyone who is obese. This is known as the sensitivity and specificity of the test.
What I've seen in the past is some previous ME/CFS tests show positive for groups with related symptoms but who don't have ME/CFS. This then becomes a worthless diagnostic tool. For example this would not have helped your aunt.
Well, reading the study, I'm not sure more patients could rescue it from methodological bias. They assumed the premise basically -- we should find a biomarker, which is kind of what this thread is discussing. Then they went trawling for biomarker in a sea of millions of biomarkers. They did this by training an model that produced the desired result, using a grid search for hyper parameters that even further expanded the available degrees of freedom here beyond what they had from the biology. No pre-registration; There are millions of places where the researchers could have made a different decision -- would they still have gotten a publishable result? Oh plus the authors mostly work for the company whose data they use, which is hoping to sell a diagnostic test.
I'm giving you a thorough response because I'm detecting a cavalier anti scientism which I think is sadly becoming more common. This stuff is hard; are you sure you understand it enough to have an informed opinion?
That’s definitely not my point, what I meant was it’s not unreasonable for someone who’s older - maybe children have grown, at our nearing retirement, etc. - why not take a risk to fly to space?
Historically, around 60% of all astronauts were from the military which is a high-risk occupation.
In the 50s, there was something like a handful of test pilots dying every single month. A subset of the ones who survived became the first astronauts. My understanding is that there are still a significant number of astronauts who were test pilots first.
If you don't have massive risk tolerance, you don't sign up for a moon mission.
Each and every one of them is fully aware that it’s a massive risk and has made their peace with that. You’re getting strapped to a giant rocket. It’s inherently dangerous
...no? It's the same as when you say you'd 'die for somebody'. I don't want to die, but if I had to die to save my family I would. That's not being suicidal. Similarly, if space is important enough to you to take this risk (which realistically is a pretty low risk!) I wouldn't call that suicidal either. I take the risk of death driving in my car every day; that's the nature of life.
Could you please name a couple persons who matter in their professional domain, who post on LinkedIn, and who you benefited from by engaging with them on LinkedIn?
Already exists, it's what people refer to as "male olympics". As far as I know, females aren't banned from competing. It is just that they don't stand a chance in most disciplines. The whole point of female olympics is to keep males out.
Confidently incorrect. As an example - a banned Thomas salto had been developed and performed by a male gymnast first, and afterwards women starting trying to do it too. This is an anecdote example, but it shows that gymnastics is not some women dominated sport. As another example - four out of four named jumps in the figure skating are all named by male athletes who performed them first.
Maybe they should accept that they simply aren't competitive if they can't compete against their own sex. There's no shame in it, most people aren't competitive, certainly so at this level.
Why not ignore gender labels and go by chromosomal configuration? There could be XY and XX [1] olympics. And then there should be X, XYY, XXX, XXXY, XXYY, and all the other possibilities [2].
There is more complexity than the binary in the expression of sex in humans.
All biological categories are fuzzy around the edges. Those fuzzy edges do not invalidate the category. The existence of small #'s of people with actual physical intersex conditions (not "I feel like <x>") in no way conflicts with humans being sexually dimorphic.
That is what they do.
Male, female, man, woman, boy, girl are sex categories, not gender categories, that is they predate the very idea of gender as distinct from sex.
Sports categories never had anything to do with gender.
The other difference of sexual development are different sexes
I agree with you in general, but I think it would be fair to let XY individuals with CAIS compete on the female side - their bodies do not respond to testosterone.
Because then trans men will dominate the "women"'s category. What's frustrating about this entire subject is that many of these things were tried. After finding that too many cis athletes were being disqualified they switched to the current rules that in most cases split things based on testerone levels. You can choose to do it some other way, but all of them come with some problems that people won't like
Really, there should be separate categories for people with more than the regular amount of arm hair. Also separate categories for short people, tall people, lazy people, people who wear glasses, people with blue trousers, and of course, for sketch artists and quantitative traders.
Didn't get around to reporting it (huge backlog of tasks). Luckily I am working on a project that _has_ to support SQLite, so if I run into the bug again, I'll report it.
I don't believe that I can tell you the name of the company (they made me sign some NDAs, before the interview, and I have no clue how enforceable those are). Also, this was in 2019, so I would be shocked if they did not fix the problem by now -- especially after I interviewed there (plus I can't be the only one to have noticed this, since).
That said, you have a few data-points if you want to try to triangulate them yourself: physical vm-hosting and storage product, existed since at least 2019, used linux kernel as hypervisor, custom FS, international customers across 2 continents. All of those data-points are my recollection from 2019.
This sounds like a very odd and very lonely job to me. Reading your description I pictured a comically tiny room with only one opening for incoming requests and another one for outgoing responses. Obviously silly, but in an abstract sense maybe not that far from the truth?
It also sounds like you were overworked and when you started to use LLMs you've stripped yourself of the chance to work with a colleague.
I really love my job and I much more love helping people with the work I do. I also much more prefer talking to people directly than writing emails answering, but it is still part of what I do, when you are an expert at something you want to share and multiply this expertise. You can write it down in a book, or at corporations you write documentation, but people prefer contacting someone, because they have always something the docs don’t tell. So people do so by asking questions. A lot by mail. So in was spending my time explaining stuff but in the context the person who needs it. This took a lot of time and I could not share it with enough colleagues ( a couple of hundred contact me regularly ) and the more you know the more people come to ask. They of course do call or meet with me as well, but then they look for discussion or developing new ideas. So today I can talk and enjoy discussing with them, while my knowledge can continue to be spread, helping the once that just seek to understand to do their job. Since I implemented this loop I get so much good feedback, because when it needs to be fast they send a mail, knowing it will be answered fast. If it is important to interact, they call. The best from all of it. Best time ever :)
reply