You are describing what has been happening to me for the past four years.

It has gotten particularly bad since a cold I got in early September. My Garmin's body battery hasn't been back to 100% since then -- typically waking up at 50% after ten hours in bed.

I blamed sleep apnea for these symptoms even though the stats from the CPAP machine look great, but after reading TFA I'm questioning it.

Any exercise more intense than walking means multiple days of recovery, which has led me to pretty much stop cycling these days -- down from 90 km/week just 18 months ago. It is a shitty experience.

There is some evidence that Omega 3s lower cardiac inflammation. If I was you I'd think about self experimenting with sauna & cold baths as well.

I think you'd want to eat an extremely clean diet to lower inflammation and get your immune system to turn off. I'm no expert, but that's the way I'd think about it

> Doctors have been next to useless in helping

With the current state of medical care basically anywhere you either have some cookie cutter ailment or you're more or less completely on your own. Nobody has time to spend looking into it nor wants any liability for suggesting the wrong treatment given that they have no idea what's wrong. Even with the common well researched stuff they're making educated guesses half the time.

I feel you. It’s long covid and it sucks. Try melatonin for sleep (the dosage and timing is very personal, I do 2.5mg at bedtime then read for about an hour). And ask about Metformin for the fatigue.

Garmin really gives a look into things I couldn't quantify otherwise. I had my first covid about 2 months ago, 1 month full infection cycle and now a month later I am happy to wake up at 50 body battery total. Also every day is a exhausting day now.

I’m n the club. Prioritizing sleep has been #1 for me and taking measures to reduce general inflammation. Recently completed an organic oats test and this has been by far the most revealing. I my case this has pointed the finger at gut dysbiosis (mold and c diff) that was probably there for more than a decade, but became a root cause of years of fatigue after a viral infection 5 years ago.

Too many details to go into but I highly recommend an OATS tests. And look into the bornfree.life (website) website for a wealth of information by people doing their best to solve these complex puzzles.

I've similarly been grasping at straws to find some way that makes the fatigue go away, at least a little (although not for myself). As doctors won't prescribe any medication off-label, I've mainly looked at other methods and nutritional supplements. Here's a list (which I've been meaning to braindump for a while now anyway):

- Like you already described, monitoring heart rate variability and associated 'body battery' with a smartwatch.

- Make a log of good and bad days, note the specific symptoms. See if there are any patterns to be found that you perhaps wouldn't notice otherwise.

- Read up about POTS / orthostatic intolerance and dysautonomia in general. The book / guide "The Dysautonomia Project" is a great read. Do a simple standing test [1] a few times (when you're feeling good and bad) to see if your heart rate increases and keeps increased, even if it does not meet the criteria for POTS.

- Do breathing exercises, humming / vocalization, ear massages and meditation to activate your vagus nerve. That might help with dysautonomia. There are lots of videos / guides to be found.

- Increase salt intake if that is not a risk factor for you. That might help with orthostatic intolerance. Find a good balance of different salts in the CFS community.

- Keep light walking and (if you can) light strength training as much as you can without triggering too much PEM.

- Be outdoors in the sunlight. There are many small studies showing a correlation between getting better from CFS and sunlight. An infrared lamp might help a bit as well, but don't buy into the fancy fads. I personally prefer a simple infrared bulb because of the warmth it gives which is great in winter on its own. It's also more similar to the sun with a continuous spectrum (although relatively low intensity). Many studies emphasize illuminating your brain.

- Be aware that food supplements will probably not help too much and cost quite a bit. But you might get lucky and find something that helps. It's hard to separate correlation from causation though. It might also feel rewarding that you're busy trying something. The placebo effect might help similarly.

- Get your ferritin levels checked, and a some other basic tests around CFS as well. See if your ferritin level has been recorded in the past as a baseline, because the one-level-fits-all approach is flawed (and especially for women). 15 (women) or 30 (men) µg / L is probably too low, even if that's considered 'normal'. Lactoferrin might help your body regulate iron levels and keep pathogens from using iron, but the scientific evidence is pretty weak.

- In case of deficiencies supplement with amino acid or organically bound metals, for example iron bisglycinate. Something like Thorne Basic Prenatal at 1/3 or the recommended dosage (1 pill per day) is quite cheap with many nutrients that might help a bit in a form that absorbs well.

- Creatine is widely used in sporting performance enhancement by facilitating ATP recyling and acting as buffer. Because it's so widely used it seems very low-risk and applicable to CFS. There are some very small scale studies reporting positive effects.

- Other things that are doubtful to help, but perhaps worth trying: wide spectrum probiotics, NAD+, D-ribose, nattokinase / lumbrokinase (but be careful and use a small dose), NAC, ALC.

[1] https://www.standinguptopots.org/resources/diagnosing-pots

It's not just testosterone.

Viral infections and stress can cause multiple hormonal issues, from testosterone to insulin to thyroid, out of which a lot will be skipped or only a partial picture will be given during average blood test (i.e. just total test or TSH).

Unfortunately, most docs will just skimp over the results or tests to be done, so the things like "I'm tired a lot" just get handwaved away. (Un)Fortunately, a lot of friends brought their blood tests results to me since I've spent quite a long time biohacking, and nearly always it was the same: the doctor didnt do a full panel but just a partial one, said something is okay or mid, when it turned out that a full panel indicated a much bigger issue. Hell, one of them would even fall unconscious nearly once a month and multiple doctors said "it's just stress" when it turned out the person was hypoglycemic and their sugar and blood pressure would crash.

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I have chronic fatigue issues and after trying thousands of dollars' worth of supplements over the years what worked best for me were blood glutamate scavengers (N-acetyl cysteine for me, I take an unnaturally high dose of up to 8g a day), which seem to help other chronic fatigue people, as well as berberine & niacinamide.

Other things help me that are specific to me but those definitely had a rather dramatic impact on me (after an initial period of feeling like I'd been hit by a train -- it tended make me experience my fatigue up front instead of as PEMS and also reduce the symptoms of it somewhat)

Taurine is great too, there's also TUDCA which is somewhat legendary in some parts of the fatigue community, very good supplement.

Hope this helps! <3 Doing the personal work of letting go of emotional stressors and ceasing all stimulant use when possible (I know it sounds horrible) was also really hard and made a big impact over the years for me.

Still not perfect but so much more functional than I used to be. <3

> Most of times at work I'm looking at colleagues right in the eye and seemingly listening intently while they're talking but I'm not catching a word of it, I'm just wandering somewhere else

It is happening to me. I thought it was some late-onset extreme ADHD.

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This sounds like POTS (Postural Orthostatic Tachycardia Syndrome).

All these are common symptoms of POTS/dysautonomia, but the one that stands out for a potential POTS diagnosis is the persistent syncope.

You can confirm this diagnosis in 25 minutes with a simple home blood pressure cuff: https://www.amazon.com/Clinically-Validated-Unlimited-Pre-Fo...

Test instructions here: https://batemanhornecenter.org/wp-content/uploads/2016/09/NA...

There's no surefire cure, but POTS is very treatable. I made an account just to leave this comment.

I apparently have sarcoidosis. The last flareup was bad enough to get a diagnosis. But docs think based on my history that I've had it for 20 years.

What I think is viral infections can cause low grade immune system dysregulation. Nominally there isn't anything obviously wrong. But it shows up in feeling crappy and having stress intolerance. It's a problem because medicine doesn't have any tests or treatments for that.

It's totally ass. However some people do get better after a year or two.

If you havent tried melatonin, give it a shot; but critically, use a low dose, like 3mg sublingually. In my experience, people often take too much and have counterintuative results.

Time to try a graded exercise routine on days you feel better and mitochondrial supplements and cutting out gluten and eating more dark leafy greens and vegetables in general and organ meats and praying it works lol

also do whatever you can to sleep more that's probably part of a problem that makes itself worse

Something relatively easy you can try is to get your body into ketosis, where mental clarity and energy levels are greatly improved. While I don't think it's good for most people (it's a pretty antisocial diet) I'd jump right in in your situation.

about the appetite, have you tried weed? the munchies might bring you back some joy eating

In the UK a recent survey of medical staff has 35% of them suffering Long Covid, those are the ones still employed there are many who have been fired as their Long Covid is too severe to work. It's notable only 10% have been diagnosed by their colleagues, a substantially higher percentage the for non medical Long haulers.

We are at about 20% in the countries still bothering to count and the front line roles like teachers and medicine are getting hit faster. Most of this is since 2022 and overwhelming Omicron onwards. In the past year for example the number of kids with Long Covid doubled.

It's not just fatigue either despite what the BBC is presenting, it's completely systemic in every organ including the brain. PEM and the crashes it causes can permently reduce how much energy you have and if you keep doing that you can die as your gastrointestinal system looses the ability to digest food.

There are no treatments, there is no research money now either. You get Long Covid you are on your own there is no medical help to be had and no government acknowledgement there is a problem and your chance of a diagnosis from healthcare is very small.

I probably have a milder version of post-infection fatigue, it's not as bad as mentioned in the article (like having run a marathon), but it means that I never feel fully well slept no matter how many hours I've slept, maybe once or twice a month. Those days I almost cry from joy and don't really want to waste them by working, just want to exist and take in the moment. I can still work fairly well when I'm tired and I'm not physically exhausted, but this is enough to have essentially caused my divorce, because I don't have the mental energy to put into fixing and maintaining our relationship after a workday, and on top of taking care of our kid.

It's sad to see my productivity drop as well compared to my past self, and I'm very worried that I won't be able to handle the grueling interviewing process when I need a new job. Self conscious that they will see the dark rings under my eyes and realize I won't be able to pull the hours they need.

If you like thinking about those things, I recommend reading about CMV.

https://denovo.substack.com/p/cytomegalovirus-the-worst-herp...

These non-fatal (or even close to unoticeable at all without statistics) diseases that still have massive world-wide effects are fascinating

We will be grappling with the impacts for at least a generation. To name a few:

1. For a time we had the largest impact seen on reducing poverty than we've seen in decades [1] but it was temporary. This goes against particularly American dogma against a social safety net. Another example of this was Bolsa Familia [2]. So we can no longer ignore that we, as a society, are choosing for people to be poor with all the negative externalities that comes from that;

2. Over a million Americans died from Covid yet we have a significant percentage of the population who think that Covid isn't real;

3. mRNA vaccines are a medical miracle that have been in the works for decades [3] and quite literally saved tens of millions of lives worldwide [4] yet antivaxxer sentiment persists [5], even with people who have a college science education;

4. We essentially returned to work to make the wealthy even wealthier and ditched our masks, which cost lives particularly for those who are immunocompromised and/or cannot take a vaccine for medical reasons. This starkly highlights how we, as a society, make a calculation as to how much inconvenience we're willing to tolerate over people dying.. This isn't new. For example, tens of thousands of Americans die every year in road accidents, many of which are preventable (eg excessive speeding, DUIs) and we just accept that's going to happen; and

5. Additionally, and this goes to your point, Covid was a mass disabling event. How our society treats the disabled was already disgraceful and it doesn't get much attention. A disability largely means society wants to discard you, or at least sweep you under the rug so other people don't have to think about you. I am of course talking about the so-called "ugly laws" [6]. While we largely don't have them now, it still exemplifies how we treat disabled people.

[1]: https://www.cbpp.org/research/poverty-and-inequality/expirat...

[2]: https://www.worldbank.org/en/news/feature/2010/05/27/br-bols...

[3]: https://www.nature.com/articles/d41586-021-02483-w

[4]: https://www.thelancet.com/journals/laninf/article/PIIS1473-3...

[5]: https://www.cidrap.umn.edu/anti-science/us-survey-reveals-gr...

[6]: https://www.nationalgeographic.com/history/article/history-o...

Sadly I'm in the same boat, for years now. Fatigue is such an inadequate term. Can't even sit up for long without getting exhausted. Still trying treatments but to no avail so far. The impact of Long Covid seems to be drawing a lot of eyeballs to this though so I'm hopeful something will be found.

It's taught me patience and empathy. I used to teach others how to program and when people couldn't get something I presumed they weren't trying hard enough. I get it now. Now I read the requirements or exercise or puzzle or whatever and there's just nothing where once there was a bubbling and filtering of ideas or whatever we call thinking.

There was a recent survey paper in Nature covering this syndrome that can triggered by various infections https://www.nature.com/articles/s41591-022-01810-6

Be well, and get your own Illness Benefit Insurance policy

Epstein-Barr is widespread - it sits latent in the human body, occasionally and opportunistically reactivating. It's detectable in 90% of humans, though most people don't have symptoms. According to functional medicine doctors I've talked to, it's a significant factor in a lot of what is understood to be long covid. I've had two reactivations in the past 3 years, each of which lasted ~6 weeks. The immune system does eventually get on top of it (assuming no other conditions keeping your immune system under siege) but while it's running rampant, you really are operating at just a fraction of your capabilities.

Epstein-Barr infection has also been found as a trigger for multiple sclerosis.

https://med.stanford.edu/news/all-news/2022/01/epstein-barr-...

fuck that's heartbreaking. that's a fate worse than death