Chronic fatigue syndrome is more common than some past studies suggest, CDC says | Hacker News Reader

Chronic fatigue syndrome is more common than some past studies suggest, CDC says

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54 pointswebmaven36 comments

Chronic Fatigue Syndrome is very real, but it has also become a “garbage bin diagnosis” that gets applied to people with vague symptoms that are hard to diagnose.

I have some friends doing research in this space (CFS, POTS, and post-COVID symptoms) alongside clinical practice. One of the hard parts is separating out the patients who have CFS according to one of the official diagnostic criteria versus patients who really have some other condition that got labeled as CFS along the way.

To make matters worse, there are different criteria for CFS diagnosis depending on the source and they have evolved over time. Remarkably, few primary care doctors are interested in even learning the criteria, so they often refer people who are just tired as having CFS rather than making even a slight attempt at understanding some of the more specific criteria for CFS.

Patients are also a struggle, as many people self-diagnose as CFS in the process of denial that they have a mental or physical health issue. It’s not uncommon for self-diagnosed CFS people to have significant improvement after trialing mental health treatment or introducing basic physical activity into their lives. This has created a massive secondary problem wherein many doctors assume that all CFS patients are just struggling with mental health or physical deconditioning, further stigmatizing the disease.

What would be great at this point is if we could identify a blood test or diagnostic marker to separate classic CFS from look-alike conditions. Unfortunately this too is very difficult as many of the patients volunteering for CFS research don’t have classic CFS or may be self-diagnosed or improperly diagnosed by doctors who don’t know what they’re doing. This results in a lot of sample sets that are questionable and, unfortunately, a lot of studies that contradict each other as there isn’t a clear way to separate the groups in the first place.

A syndrome is defined as a group of symptoms that occur together. If one person has "classic CFS" and one person has "lookalike CFS" and there's no diagnostic differentiator (eg they both exhibit the same symptoms and no test will tell them apart) then by definition they both have the same syndrome. If sounds like you're defining CFS as a distinct illness which it is not, that's why it's called a syndrome.

> If sounds like you're defining CFS as a distinct illness which it is not

No, CFS has some distinctive markers that separate it from generic fatigue. Post exceptional malaise is a key differentiator.

My wife went through this for about a year (pre covid). She went from being extremely active to sleeping for 16 hours a day and still being exhausted. She got tested for just about everything, and all they could find were signs that her body had fought off a viral infection very recently. Eventually she recovered on her own.

I'll be honest, it was really scary. At various points they were checking for all sorts of cancers, even going so far as to do a bone marrow biopsy. Every time something was ruled out the specialist we were sent to would give up and send us to another specialist. We never got a real answer, other than the viral thing, and she eventually recovered on her own.

This was my wife's experience as well, back around 1997.

(Minus the extensive chain of specialist consultations.)

Yeah, after having covid in 2021 i was never the same. Feeling more tired, still exercising but not feeling "good" after it like before, my range of emotions has diminished...

Maybe its depression, maybe its me getting old, but something got messed up after having covid.

After seeing a bunch of doctors and getting some tests done, everything came back normal. So, I'm thinking it's just good old chronic fatigue from the viral infection

That sounds terrible. Best wishes internet stranger.

The first year I had brain fog - I'm sure my concentration just isn't the same as it was before COVID.

I'm convinced something in the language center of my brain was altered by covid. Words don't flow as smoothly as they used to. I don't know if its because the two-years of being shut in just kind of stunted me socially, I'm just getting older, or if covid actually gave me minor brain damage. Scary stuff.

You me both. I used to stumble over every other word wrong but still get them all out and make a point. Now I get caught even saying some words without the brain shutting down and failing and playing catch up.

I want to believe it’s psychologically spread fear but it feels real

Working out and not feeling good after, might be a sign that the body is already at it's limit and the workout is consuming even the last bit of energy. For me it was stress, bad diet, bad sleep and undiagnosed gut problem.

Yeah, after 2 years in a trial and error state. Im pretty sure its gut related. Just didn't find the right variables yet unfortunately...

https://www.cell.com/cell/pdf/S0092-8674(21)00754-6.pdf

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

Do you have gut symptoms?

Covid isolation is a compounding factor as well. Spending two years in social isolation with a precipitous decline in physical activity does quite a number on the body and brain.

The fact that many spent those years glued to dopamine mills like social media, video games, porn, etc. probably doesn't help with the concentration problems either.

Look up long Covid or post Covid condition.

I have, went to this lovelly rabbit hole with a lot of snake oil. And not one definitive answer, just like every other chronic disease

There's no known treatments but many exciting clinical trials to find some. Also more clearer answers every year.

Many long Covid researchers believe that if we can go all in to solve long Covid and its CFS manifestation, that we can likely solve other ones, especially if we find that it is caused by viral persistence. Dr. John Chia was ignored about his CFS research for decades.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1770761/

I hope that if we find a reversible cure through antivirals, gut modulation, monoclonal antibodies, etc, that Mr. Chia gets the recognition he deserves given his influence on these hypotheses.

https://www.sciencedirect.com/science/article/pii/S073567572...

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

I was struggling with something like this. The two things that helped me most were:

(1) Discontinuing or cutting back on medications that cause lymphedema. For me, this meant quitting Flonase (a corticosteroid) and limiting my use of NSAIDs. Birth control is also on this list, but didn’t apply to me.

(2) Manual lymphatic drainage massage. I just DIY this based on YouTube videos, but you can pay to have it done professionally.

I also take the supplement D-Ribose, but I’m not sure if it had any particular effect on my fatigue without the above.

I am about 90% recovered now after years of extreme struggle that almost ended my career. But my health situation is unusual overall, so I have no idea whether any of the above might apply to others.

My mother had chronic fatigue syndrome. I used to have it for over 10 years.

For my experience, I can tell you it is a genetic/nutritional problem. I’m was helping researcher at Stanford With parts of a study and they are looking at the metabolics of this from a point of nutrition and genetics. Specifically Manganese and a gene called GCH1. But I have a feeling other nutrient deficiencies and genes can causes it as well, such as possibly zinc, B6, as well as iron.

As engineers, we're used to a clean separation between cause and effect. In medicine, the separation between symptom and disease is far more grey.

There's a push to call CFS "Myalgic Encephalomyelitis".

I know two people with ME/CFS which have several clear indications that it is post-viral (but years before COVID).

As an engineer, I model it in my head as "ME is the disease, and CFS is the symptoms". I'd say that you had CFS as the symptoms with a different cause than my friends.

But the medical field doesn't think like I do as an engineer, mostly because the line between symptom and disease is much more grey and unknwon.

I have been dealing with something like this, I think depression or burnout or overtraining but I don’t feel depressed or burnt out. I went from running 50 miles a week doing 10+ mile runs 3x a week to barely being able to run 3 miles to nothing and I feel exhausted and like my brain isn’t working. My smart watch is saying that I’m not recovering well. I’ve never had Covid as far as I know. I just had a physical and they didn’t find anything.

My doctor is pushing me to buy some ring-shaped sleep apnea monitor.

I don't think I have CFS or sleep apnea (I'm tired because I sleep like shit because I drink way too much caffeine before bed), but it's a possibility not explored in physicals.

I hope you find some answers soon!

FWIW, I have a similar athletic history & am about 9 years into chronic fatigue syndrome. Mine’s likely post viral, but I can also remember a 24 hour race where I finished not feeling like myself anymore. I’ve had extreme exercise intolerance and all of the typical CFS symptoms. I’ve been to dozens of doctors and several top institutions with no answers yet.

3 years into it, I was diagnosed with mild sleep apnea — even though I’m not overweight.

I’m finally feeling somewhat better after eliminating all caffeine (I only had 1 8oz cup every morning), plus 4 months off of any exercise, work, and as much stress as possible. Some of my mysterious and long-lasting symptoms, such as various food intolerances & dizziness, suddenly resolved.

I stopped drinking alcohol a long while ago too, thinking even my occasional drinking could impact my sleep and recovery.

I still experience post-exertional malaise if I go above zone 2, but I can now tolerate zone 2 workouts without the typical crashes that would occur 24-48 hours after exercise and would last for days.

I’ll likely be on a nice e-bike soon, so that I can keep my heart rate more stable and low over hilly terrain.

Are you treating the apnea? How did you start to identify the other triggers and level of exercise you can tolerate?

I also have mild sleep apnea and am not overweight. Although weight gain can directly cause apnea, it isn't the only cause.

Treating the apnea improved my quality of life an immeasurable amount. I started actually being able to have a life rather than a series of responsibilities to get through between naps. I still struggle with energy levels though.

I had symptoms for 10-15 years before getting diagnosed. I've heard doctors have become a lot more diligent about identifying it over the past 5 years or so.

I think something like 80% of people with it were undiagnosed as of 2016ish (as per a study done by surgeons).

The article attributes CFS to an immune response. I think that's over-simplifying it. Certainly for long covid, it appears to be multiple different things all acting together, and that's probably true for CFS too. Yes, there's probably an immune system involvement, but it's probably also other things, and it might be a different mixture of things for each different person. I think this is one of the things that makes the condition so complicated and hard to treat.

I caught covid in May 2022. I mostly recovered after a month, but it was about 6 months later that I started feeling really tired and having brain fog. It's getting a little better now, slowly.

So a simple and therefore wrong hypothesis: does anyone know if doctors test glycogen generating capacity when diagnosing this? Impaired liver function, in some of its many duties, would show at least some of the symptoms listed in the wikipedia article for CFS.

1. https://en.wikipedia.org/wiki/Glycogen#Functions

2. https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome#Signs...

You are lucky if they even take you seriously enough to do a simple lab test...

It's particularly frustrating because the doctors don't know how to deal with this and tend to be dismissive

I didn't see a single mention of Epstein-Barr in the article. I thought the prevailing theory was that CFS is a sequela of the cytokine storm in response to EBV infection?

In the early 80's I was diagnosed with CFS's Thanksgiving uncle, Epstein-Barr virus.

I blame it on my choice to cozy up to another teenager, who was recovering from mono. High school with chronic brain fog was like you'd expect but I did enjoy scaring the school nurses with 70/45 bp. I used risky behavior as a coping stimulant.

Adderall made everything life-chagingly better. Not until my 40s unfortunately - to which my now (adult kids) can attest.

Biased article that completely ignore side effects of massive mRNA vaccination and blame everything for covid.

Could the lower oxygen content of the air, the lower nutrient content of the food or the antidepressants in the water have anything to do with it?

No (no significant difference in atmospheric oxygen, but individual indoor environments may be a concern)

Maybe (nutritional content of food varies widely, examine diet)

Unlikely (specifically antidepressants, but may be worth evaluating water quality)

During the past 100 years atmospheric oxygen has declined by 0.1%

Fruits, vegetables, and grains grown today carry less protein, calcium, phosphorus, iron, riboflavin, and vitamin C than those that were grown decades ago.

Low-level exposure to a common class of antidepressants found in streams and ponds delays both development in fish and metamorphosis in frogs.

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