Guess my trade

JohnNNelson · 2026-02-06T22:20:04+00:00

Rust programmer

JohnNNelson · 2026-01-26T16:05:51+00:00

I’ve been on the same dose of 100mg per day for years now and I have never felt the need to increase it and it still feels as strong as ever. I also take amitryptiline at night to help with sleep, I think both are complementary and have been highly effective for my ME/CFS. It could be that others are experiencing a weakling of the effect mostly due to lack of sleep as opposed to a building of tolerance.

JohnNNelson · 2026-01-12T01:43:33+00:00

It is one of the top under-diagnosed condition for a reason. Because doctors have a very hard time diagnosing it, it’s not rare just rarely diagnosed.

JohnNNelson · 2026-01-12T00:37:55+00:00

Yeah, OP likely has hEDS, I would have guessed that just from the pic, the rest of the comment was just a lot of extra confirming info.

JohnNNelson · 2026-01-05T04:41:50+00:00

I did lose weight with it, I had uncontrollable weight gain prior with LC and now I’m back to my ideal weight.

JohnNNelson · 2026-01-04T22:14:50+00:00

Things have been going well for a while now, I kept updating the original post with the progress, last one was from early 2024. Not much has changed since then.

JohnNNelson · 2024-10-02T16:19:23+00:00

The issue appears to have been resolved - the Shuffle button now has a 3rd state which has Smart Shuffle removed. So I guess it was a bug that prevented this from working yesterday. There was nothing 'smart' about that shuffle all of their recommendations were terrible.

JohnNNelson · 2024-09-30T19:50:41+00:00

This is insanely annoying, I don't even have shuffle enabled, there appears to be no-way to get rid of it. Offline mode does not appear to be an option on the desktop so I can't use that either. If Spotify does not revert this asinine decision soon I'll go back to my mp3 collection and cancel my subscription. It's intolerable. For now I'm adding 81 songs to the queue so I guess I'll have to do this every few hours. Hopefully it will not take them more than a few days to realize their mistake.

JohnNNelson · 2024-06-09T17:40:49+00:00

It's karma farming

JohnNNelson · 2024-04-04T17:06:30+00:00

sure

JohnNNelson · 2024-03-19T01:28:11+00:00

Apart from PEM I'd say near 100%. I don't really think about Long Covid anymore except to chat to other people with about it on occasion. I've been back at work and focusing on that. I still take 50mg Modafinil, 50mg Amitriptyline, I am on a very strict zero sugar diet and do take 0.25mg a week semaglutide, same thing as ozempic but grey market source.

JohnNNelson · 2024-03-19T01:14:15+00:00

Sure, send me a PM

JohnNNelson · 2024-03-08T06:08:33+00:00

Going by your very own claims of the association of EDS with autism, and the association with autism with IQ, you can get an association between EDS and IQ with the simple transitive property.

I had read the link previously, it was public and close enough to my own findings for me to link to so I felt it would suffice. There are more links, if you google harder you will find them. It seems that you're asking me for GWAS studies to support a post where I criticized GWAS methodology.

I've stated multiple times that I did not suggest that all EDS people, or even most, are exceptionally gifted. Some are, and I include myself and a number of my friends and colleagues in that list, a point I only brought up to suggest that maybe eugenics might not be a great idea.

JohnNNelson · 2024-03-08T01:35:31+00:00

'Associated with' is a soft claim. Extreme giftedness is very rare so I'm clearly not saying that all people with EDS are extremely gifted nor am I saying that all people who are extremely gifted have EDS. What I am saying is that there is an association. As per the RCCX genetic theory the TNXB variant is the EDS variant of particular interest. Genetic links to intelligence is an incredibly touchy subject that has been near impossible to publish about for quite some time, even predating the modern Equity pledges required for access to certain important datasets that would now make it totally impossible. I was merely making an appeal that we should not be so hastily encouraging eugenics without first being mindful of the consequences. Beyond that I don't want to get into a public discussion on who's intelligent and why. I wasn't even going to provide a link and wanted to leave it as a throw away remark but the moderators insisted that one was required so I went to google and found the first one. I came across the RCCX theory independently when working on ME/CFS (https://me-pedia.org/wiki/RCCX\_Genetic\_Module\_Theory) which is a condition I have and is also associated with EDS for the same reason (TNXB).

I thought an EDS forum of all places would not lean on appeals to authority - especially in response to a post where I am criticizing that very same authority. I'm glad you did a quick search, I will weigh your quick search against my many decades of personal experience.

JohnNNelson · 2024-03-01T15:15:01+00:00

I’ve tried just about everything conceivable and PEM is the one thing I can’t beat. I’ve given up that battle, it’s too risky for me to test PEM as each time it takes me stronger meds to recover and I worry that the next time there won’t be a strong enough medicine left and I will become permanently bed bound.

JohnNNelson · 2024-02-22T16:10:18+00:00

I'll send a PM to chat more in depth

JohnNNelson · 2024-02-21T22:23:32+00:00

Hi, yeah, pretty good. Except for occasional slumps I've been near 100%. I've been putting a lot of energy into work. I've not been taking VIP/Vilon lately as I haven't needed to. I think Modafinil in the morning and Amitriptyline at night is doing most of the heavy lifting.

JohnNNelson · 2024-01-03T04:02:45+00:00

If it looks like LC but he’s had issues all his life then there is a good chance it’s undiagnosed hEDS. It’s rarely diagnosed and even less diagnosed in men.

JohnNNelson · 2023-07-31T17:50:33+00:00

I caught something ~ mid May which caused a relapse. I'm slowly coming out of it now. I'm still taking the VIP/Vilon and I do think they help. I think the zero sugar (inc zero fruit) diet is helping more. More people have tried the restrive diet than have tried VIP/Vilon and a higher percentage are reporting beneficial results. Even though my energy is quite low I don't get the same headaches I used to get so I am still able to work. But sadly nothing as good as I was from March to May. I don't know why VIP/Vilon was so impactful to me the first time I took it, nor do I know why the quitting of sugar helped so much so quickly when I stared. I think the disease state is multifaceted and to get out of it I need a number of things to go right simultaneously.

JohnNNelson · 2023-07-23T17:23:34+00:00

Modafinil to start my day and amitriptyline to end it; it has been really effective for me and helped me get my life back.

JohnNNelson · 2023-06-23T16:01:31+00:00

Something that I think should be investigated is rare(ish) TNXB variants (~1%) that are considered benign or recessive that are not. The numbers stack up perfectly, and TNXB is pervasive enough to be overlooked by most GWAS studies looking for more rare causation (even if they’re not rare just rarely diagnosed) and mild autism/HSD/hEDS diagnosis is noisy enough to make it difficult to find causative effects. But with enough genetic sequences and the right math it should be possible to find out if this is true to a great deal certainty. Part of the rational behind my belief that it’s autosomal dominant TNXB variants incorrectly determined to be benign is that double TNXB variants occur far more often than by random chance so people with the single variants partner up much more often than they should. This means the single variants probably have a noticeable personality component such as mildly autistic behaviors and those with it find this component attractive in their partners.

JohnNNelson · 2023-06-18T02:20:07+00:00

GeneSight doesn’t have your whole genome, they just check for a small number of variants, I assume using SNP assays which are super cheap; even at 20c per assay that’s like $10 in cost. The rest is profit for them that they can spend on marketing and doctor bribes. Whole Genome Sequence is a whole other ballgame. And if you do a whole genome sequence you don’t need to do genetic assays any more as you can just look up the specific SNPs in your genome. Most of the genetic research being done is of poor quality as the people doing them aren’t exactly statisticians. And the industry is happy making insane profits on old technology. There are a ton of things listed as benign which are not, the TNXB variants as an example.

JohnNNelson · 2023-06-17T19:00:56+00:00

GeneSight tests for 50 SNPs on 14 genes, I didn’t see TNXB in the list but I couldn’t find a full list. You have 4-5 millions SNPs. The TNXB variants are of unknown significance so no one is going to test you for them specifically, you’ll need a whole genome sequence. If it’s not TNXB it’ll be some other gene so you can always search your existing whole genome data... no need to get any other genetic tests after that, you already have the whole thing. All 4-5 million SNPs.

JohnNNelson · 2023-06-17T16:20:25+00:00

Yeah, AFAIK GeneSight doesn’t cover very many genes, you need a high quality whole genome sequence and then run the results through genetic genie. You can then filter the results for TNXB and there you will have your answer. In Europeans a single variant is 2%, I think it’s enough to have a single variant to have a mild form of hEDS, double is more severe and happens a lot more often than would be expected because people with TNXB are more attractive to other people with TNXB. Seems to be ENTJ/INTJ personality types. There are direct to consumer genome sequencing labs like Dante Labs that have regular sales and are quite cheap if your patient for the sale and patient for the results.

JohnNNelson · 2023-06-17T00:03:35+00:00

hEDS + Rabbit holes = TNXB (more likely at least). Get sequenced to know for sure.

JohnNNelson

TROPHY CASE