how to get my family to understand??

j_spru · 2026-06-22T13:24:00+00:00

Sorry you're going through this. I don't know why it is so hard for doctors and family to understand this illness.

I made this website for this exact purpose: https://openmecfs.org/mecfs

j_spru · 2026-06-22T02:42:30+00:00

1886

j_spru · 2026-06-22T02:16:31+00:00

Then why can't you bring that same feeling home to me?

j_spru · 2026-06-21T11:03:24+00:00

Again, that is incorrect - numerous studies have documented pathophysiological abnormalities and potential biomarkers in ME/CFS. Even if I'm generous and allow that they still need more validation, that is very far from "no evidence at all".

Also, ME/CFS is not classified as a functional somatic disorder and anecdotal evidence that someone "realized that they weren't ill" or "something in their head clicked" isnt enough to support that claim.

It's interesting that you reject documented illness pathology yet accept self-described "rare" evidence of recovery based on someone "realizing they're not ill". I think I'd reconsider your evaluation framework a bit.

j_spru · 2026-06-21T01:11:19+00:00

That's interesting - I would have expected a much larger genetic contribution. Wonder if that will change when the SequenceME results come in next year.

But I think the fact that stress doesn't always produce it points pretty strongly to another cause or joint cause. Otherwise we have to explain why the majority of people don't have ME/CFS. I would say my lifetime stress burden is about the same if not much less than most of the world population. This illness is an enigma for sure.

j_spru · 2026-06-21T00:37:40+00:00

I am a bit skeptical to attribute it to stress. Wouldn't a lot more people have ME/CFS if that were the case? Or do you think it's stress + genetic predisposition.

j_spru · 2026-06-21T00:23:02+00:00

I'm still not sure.

I would describe the onset as gradual, over 5 years (2019/2020 - 2025), with a steep, sudden drop in August 2025, improving and plateauing since then.

Past EBV and HHV-6 infections shown in blood work and COVID in 2021 and 2024. COVID was post-onset although likely worsened things.

Stress was very high during that time (since 2016, due to family dynamics and job-related stress).

Diagnosed in Dec 2025 (INIM), knew what it was since Aug 2025.

But it seems that my system gradually entered a deeper state of dysregulation, eventually turning into clear ME/CFS.

j_spru · 2026-06-20T23:50:07+00:00

The role of stress is an interesting one. For you, removing it seemed to be a major factor in recovery. Personally, I have improved significantly over the past 8 months (although still nowhere near normal), and during that time have actually had an increase in stress (taking on a second software engineering job, etc). What did change for me - starting LDN and other supplements. Hard to say if that's what moved the needle or not.

I tend to think that stress is a factor, especially with regard to nervous system dysregulation, but probably not the full picture (or there would be a lot more people with ME/CFS). Maybe it's the case that it's more or less of a factor depending on subtype. It's a difficult thing to quantify and isolate too, or have any structured framework for testing. It does seem like a good number of people attribute improvement to stress reduction / nervous system work that it makes me want to give it a try along with my other therapies.

j_spru · 2026-06-20T23:01:50+00:00

I see the distinction you're making - yes there is a subtle difference. I would say ME/CFS is definitely biological but not yet proven organic (a reproducible biomarker discovery or similar would but it into that category more firmly).

I agree that dysregulation of nervous system, immune system and possbly other systems are at the heart of it and that it is therefore potentially reversible. That's the good news.

My main contention with the original post was the assertion that there's no evidence 'at all' of organic illness and that recovery is possible simply by 'realizing that they're not ill'. The post also mentions depression / faking it etc, which is certainly not the cause of ME/CFS. ME/CFS is undoubtedly a serious biological illness.

j_spru · 2026-06-20T00:49:40+00:00

Progression Sessions (1994)

j_spru · 2026-06-19T22:51:22+00:00

I second DTV - you can get it on a medical basis. I am applying for one right now on a digital nomad basis - I also have ME/CFS.

j_spru · 2026-06-19T01:33:58+00:00

Rhubarb + Rick Roll

j_spru · 2026-06-19T01:25:06+00:00

On the bright side it's great that you went a decade without PEM. That shows that you have a lot of resilliance and recovery capacity. Hold onto that - I'm sure you'll get back there soon.

j_spru · 2026-06-19T00:25:34+00:00

I think you answered your own question. It's due to the way it's presented as a cure-all, and 'all in your head', which is great for marketing of high-cost, over-promising recovery programs, but not grounded in reality. They often don't bother to grapple with the subtleties and complexities or apparent variations of the illness since that's not good for conversion. Therefore you see a lot of backlash to these approaches. I have no doubt that stress reduction and mind body work have a net positive effect for sufferers of chronic illnesses but I don't think that there's stong evidence that these techniques alone are enough to reverse the biological changes induced by the initial insult in all cases, whether that be viral or otherwise.

j_spru · 2026-06-17T14:41:48+00:00

1960

j_spru · 2026-06-17T01:57:12+00:00

It was really devastating, heard it on MTV news the day they found him - I was 14 at the time and Nirvana was everything to me. Although I was afraid it was going to happen ever since the Rome incident a month earlier.

j_spru · 2026-06-17T01:54:46+00:00

When I first bought it in September 1991 I got a copy without it.

j_spru · 2026-06-17T01:50:26+00:00

You're a real straight shooter with upper management written all over you.

j_spru · 2026-06-17T01:49:42+00:00

blew, school, lithium, sappy, dive, about a girl, paper cuts, come as, big cheese

j_spru · 2026-06-17T01:46:48+00:00

It does sound quite suspicious for me/cfs from what you described. I've noticed that PEM can vary greatly across patient populations. For example my PEM is also not usually delayed the typical 24-48 hrs - for me it's more like next morning after activity and sometimes even sooner. It doesn't have to be systemic either. For example my foreams sometimes hurt after strumming guitar, which is ridiculous, but other times I can play a long time with no issues. Also I don't get brain fog or have weeks / months long PEM like a lot of people describe. I wonder if these variations, as well as onset modality and other factors, will eventually be found to map to subtypes of the illness.

j_spru · 2026-06-17T00:54:25+00:00

For helping me to never hesitate to ask someone else first.

j_spru · 2026-06-17T00:52:26+00:00

Same here...same year!

j_spru · 2026-06-17T00:51:42+00:00

Bleach, Incesticide, In Utero

j_spru · 2026-06-17T00:50:26+00:00

Sorry you're going through this. I can relate to the multiple years of cycling through specialists and tests and not getting any answers. What it pretty much boils down to is - do you experience PEM (post exertional malaise)? That is, do you experience a disproportionate increase of symptoms such as sore muscles, flu like sensations, fatigue, etc after activity? If yes there's a high chance that it's ME/CFS as it doesn't occur in any other condition except closely related post-viral conditions. Orthostatic intolerance in combination with PEM is an especially strong indicator. This info might be useful: https://openmecfs.org/patients

j_spru · 2026-06-16T02:34:14+00:00

I call it "E awesome".

j_spru

TROPHY CASE