26 ms·

Chronic fatigue syndrome may have a post-viral infection origin

228 points by wglb 3y ago

alexfromapex 3y ago
My money is on Epstein Barr causing it. Even acutely, many are faced with intense fatigue.
- rnk 3y ago
  There are lots of articles and probably studies that seem to find it a lot. I agree it's pretty likely it's causing some of it at least. Someone in my family has cfs, unrelated to covid afawct, but no one has figured out any cause.
- quickthrower2 3y ago
  If so, since 90% of people have it [1], avoid it is futile (a bit like avoiding COVID). So the question is how to avoid it causing CFS, or how to get the body out of the CFS state. [1] https://www.ncbi.nlm.nih.gov/books/NBK559285/#:~:text=Epstein%20Barr%20virus%20(EBV)%20is,rare%2C%20but%20important%20to%20recognize https://www.ncbi.nlm.nih.gov/books/NBK559285/#:~:text=Epstei.....
  - mschuster91 3y ago
    > If so, since 90% of people have it [1], avoid it is futile (a bit like avoiding COVID) It's not futile. Install proper HEPA air filters in trains and other public transit, provide actual ventilation in public buildings, mandate antiseptic (e.g. part copper) door handles, and especially: provide actual sick leave at work and mandate employers to send sick employees home (and while we're at it, the same for kindergartens and schools)... that would drastically cut down on all kinds of infectious diseases without forcing anyone to wear masks.
    - gmerc 3y ago
      EBS is called the kissing disease for a reason
      - mschuster91 3y ago
        I hope that mRNA technology will soon present a viable EBV vaccine candidate. EBV is implicated in a lot of immune-system-related diseases, but it's so incredibly infectious that it's impossible to get rid of.
      - hinkley 3y ago
        Unlacquered brass handles for all public spaces
- cstrahan 3y ago
  That’s my guess. Got EBV back in 2015, and spent about a year with debilitating photophobia, visibly bulging lymph nodes, along with a host of symptoms that still haven’t gone away: excruciating joint pain, muscle weakness, headache and brain fog, anhedonia, annihilated sex drive, etc. Trying to manage my symptoms, I got a hormone panel to compare pre-EBV. Testosterone and Estradiol dropped by about 65%, where it remained for 3 years until I convinced a doctor to take that delta seriously. I’m better on TRT now, but I’d say I’m at about a solid 65% of my former self. Joint and muscle pain is gone, but I don’t have the same drive and still struggle with anhedonia. Would love to try a cocktail of things — almost anything really — to feel more alive, but I don’t want to do antidepressants, and I don’t want to be branded “drug seeking”, so I just try to get by for now.
  - nick_ 3y ago
    If you haven't already, you could look into trying daily Valacyclovir. Epstein-Barr is one of the HHVs, and may be helped by that drug.
- mjhay 3y ago
  There's nearly incontrovertible evidence that EBV causes the great majority of multiple sclerosis cases, so it would track.
mchpow 3y ago
I was always under the impression that CFS was a non-specfic set of symptoms; a kind of catch-all categorical bucket for an unknown condition. If that's true, then that post-viral infection origin seems misleading.
- astrange 3y ago
  It could still be the other way round. (In fact, the other way around is definitely true.)
- nirse 3y ago
  Why would that be misleading? This seems to be just an attempt to better understand (some of the / potential) causes that unknown condition. Perhaps it doesn't help to diagnose it, as there might not be any direct evidence left in the body to point at the original cause, but in the longer term it certainly helps if you know where to look.
  - mchpow 3y ago
    Maybe. It's just that if CFS doesn't point to something real, then that non-real, non-specific thing, having an origin doesn't really make sense. But if it is actually real (and specific), as indicated by another commenter, the origin seems fine. Still seems like there's mixed views in medical community though.
- lindsaywaterman 3y ago
  MD here - I'd disagree. Although I've heard the same take from many other phsyicisans! Anyone who has worked with the condition (I've had 100s of CFSers by now) knows it's a pretty distinct syndrome. The CFS push-crash cycle especially is quite distinct.
  - onlyrealcuzzo 3y ago
    Isn't the push-crash cycle pretty common in people that don't have CFS also?
mjsweet 3y ago
I've battled with CFS/ME multiple times in my life, each triggered by different ailments. First, it was Epstein-Barr at the end of my tenth grade, leading to two solid years of chronic CFS. Then, at 31, Chicken Pox knocked me out for roughly 18 to 24 months. More recently, from January to August 2021, I experienced "Long Covid," and this July, a bout with RSV left me grappling with CFS once again. My symptoms include daytime fatigue, necessitating frequent 40 to 120 minute naps. The brain fog is especially frustrating, causing confusion and lack of focus. This recurring condition has undoubtedly impacted my professional trajectory. Interestingly, the only regimen offering relief has been consuming two crushed garlic cloves daily, which I started two weeks ago. I have hypotheses about why this is effective — possibly related to garlic's blood-thinning properties, but no concrete clinical evidence to back it up.
- spuz 3y ago
  To what extent does your regimen relieve your symptoms?
  - mjsweet 3y ago
    I feel clear headed, no longer require naps in the day time and just seem to have higher energy levels. I got out this weekend and completed some long overdue garden maintenance.
- cl3misch 3y ago
  Garlic is commonly seen as (strongly) stimulating metabolism, right?
  - mjsweet 3y ago
    Look I think so, curious to know if the blood thinning properties of alician would enable to body to better repair itself, improve important metabolic processes?
  - Tao3300 3y ago
    It also wards off vampires. Which cause fatigue. Of course I'm joking, but also wondering if there isn't a fragmented memory of a folk remedy buried in that bit of lore, alongside the "people with <disease> hated the smell" explanations.
atleastoptimal 3y ago
[flagged]
- tudorw 3y ago
  Please think before you write, this is extremely offensive.
  - atleastoptimal 3y ago
    I didn't say all or even a majority were exaggerating symptoms, I simply said that many were. Part of my justification was a number of studies which have found psychological distress over catching COVID as a strong predictor of long Covid: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9825049/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9825049/
    - DoreenMichele 3y ago
      That isn't necessarily evidence of psychosomatic cause. I have a genetic disorder that was diagnosed late in life but I knew well before I had a proper diagnosis that I had frail health. I'm cautious and worry about things that others don't worry about because history proves it's a real problem for me, more than average.
    - tauberian77 3y ago
      Thank you for your concern. When I was 17, I developed acute neuropathy after covid which was diagnosed via a biopsy. It manifested as orthostatic intolerance caused by insufficient blood flow to my brain. I have been bedridden for around two years now. I was certainly distressed when I got COVID, largely because of a burning pain emanating from my extremities. My uncle died from autoimmune scleroderma. He also developed Lymphoma, whose pathology we believe began with Epstein-Barr. The prevailing hypothesis is a cross reactive species of auto antibodies to the Angiotensin II Type 1 receptor. I unfortunately have not been able to receive a test for this antibody; however, I did test positive for Alpha and Beta adrenergic autoantibodies along with Muscarinic M2 and M4 autoantibodies targeting the hippocampus of my brain. I managed a borderline positive titer for anti TSHDS antibodies, which are correlated with small fiber neuropathy. Normally, I do not comment, and I specifically made an account to type this message while holding a laptop over my head, a difficult task as you can imagine. The medical community is moving too slow in response to post Covid syndromes. I and all the other people affected with neurologic complications would be most appreciative if you all helped review literature on the immune system. It is an awful lot like debugging code! Right now, I read a section about Janus Kinase and TNF alpha. I believe a medication like baracitinib would do a wonderful job mediating mthe inflammatory response. ICU covid patients typically died from TNF alpha, Interleukin 6, and Cysteinyl Leukotriene 1 mediated by 5 lipoxygenase synthesis from arachidonic acid. All of these biomarkers are elevated in long covid patients. Lastly, covid can actually cause a reactivation of Epstein-Barr and HSV1. Telemisartan is an Angiotensin receptor blocker that can downregulate ACE2 levels in the body and demonstrates a prophylactic effect against covid. If you read this far, I am deeply appreciative. More so than monetary donations, I would be grateful if could spread the message about this disorder.
xbmcuser 3y ago
I did not get covid but did get the vaccines + 2 boosters. I have been feeling tired etc for the last 6+ months turns out because of the work at home etc and my lifestyle I was not getting enough sunlight and had very low vitamin D levels. I am not white so need to spend longer time in sunlight according to my doctor.
- harry8 3y ago
  Please ask your doctor if supplements are right for you and how much.
  - ljf 3y ago
    While supplements can help, nothing been sun on your skin for vitamin D and also for other help benefits - in moderation of course. If someone's doctor has told them to get outside more and they find it is helping, I would not personally recommend someone stays in and just take supplements as an alternative.
    - k_roy 3y ago
      And your statement here is part of the problem. Too many doctors are quick to look at a person and their lifestyle and just say "welp, get outside, get more active, lose some weight, get some sun" There are cases where supplements or medication are completely valid. How many (primarily women, but some men), have hypothyrodism. I know of at least 3 other women in my life who, instead of the doctor listening to their symptoms, just kept recommending "eat better, exercise more, lose weight". No. There was a serious problem. And a problem which literally makes those three things almost impossible. And can be detected with a simple blood draw. One of my friends finally went to an urgent care, they did the test, prescribed levo with a "follow up with her doctor", and the doctor wouldn't renew the prescription because she was just "inactive and retaining water". Of course at this point she switched doctors to one that wasn't a misogynist. Same thing with vitamin D. If you live above 37 degrees of latitude, chances are you are taking vitamin D most of the year because "sun on your skin" just ain't happening.
lindsaywaterman 3y ago
Physician here. Imo CFS is best understood as the endpoint of an evolution within the nervous system that is increasingly called "central sensitization syndrome." (CSS) This syndrome is caused by a chronic dissociative or avoidant stress response, usually having it's origin in early childhood adversity. Prior to developing CFS, most individuals have other manifestations of CSS, such as IBS, chronic pain, TMD, etc. Every new stress, be it a viral syndrome, a grief event, a difficult move of house, what-have-you, can cause CSS to further evolve, eventually arriving at CFS. The average CFSer has 5 other CSS syndromes. Treatment is pacing and mindfulness. This treats the underlying issue of chronic avoidance/dissociation. See cfsselfhelp.org.
- akdor1154 3y ago
  You could be completely right in some cases, but the way you present this is completely disregarding a professional researcher, peer reviewed and published paper, and honestly quite decent pop sci writeup. I don't think that level of dismissal is fair or respectful unless you accompany it with a relevant criticism of the research itself.
  - lindsaywaterman 3y ago
    Ouch, you're coming at me red hot there! To be clear, I think post-viral syndromes are a common "proximal" cause of CFS. If a patient doesn't have an underlying dynamic of chronic dissociation, and doesn't already have a few other CSS syndromes, then I think it's unlikely they will develop CFS as a post-viral syndrome. Cheers.
    - fatfingerd 3y ago
      To me this seems suspiciously like confusing heightened awareness of a problem, or inability to treat it early, with cause. People who seem likely to be diagnosed seem less likely to happily sleep for 12 hours a day for a few weeks after a viral infection, more likely to blame themselves for their state and more stressed by awareness that something is wrong. Naturally, if a rich layabout has the problem anyway, then we can look to their childhood and find at least one trauma.
b800h 3y ago
Largely unrelated, but the thing which leaves me feeling most wiped-out is playing (modern) computer games. I've cut them out completely, as they have no positive benefits and leave me listless and unmotivated.
- prawn 3y ago
  I wonder if it's because they're so stimulating with minimal physical effort. So, after playing, you hit the real world where achieving anything useful takes mental or physical energy and the contrast is significant.
- plugin-baby 3y ago
  Any particular class of game? Are we talking AAA console games or casual mobile games, or everything?
  - b800h 3y ago
    I was particularly fond of grand strategy.
- lindsaywaterman 3y ago
  Interesting - yes my take on this is that gaming is a dissociative activity, so typically the symptoms will resolve during the activity, but afterwards will make CSS/CSS worse.
  - spinningD20 3y ago
    Serious question: Why would this be any different than reading a book? Is the implied suggestion, that, anything that is not "real" is bad? Does watching a tv show, movie or youtube video, reading a novel, or listening to podcasts of people discussing things (either fictional or "real world") have the same supposed impact? What about listening to a co-worker tell me about their weekend? How do we define a disassociative activity?
    - lindsaywaterman 3y ago
solresol 3y ago
Occasionally I think the medical world has a communication problem. In 1989 I had some blood work done which checked for Epstein-Barr (it wasn't present) for reasons that made sense at the time. Then I got ME/CFS a few weeks later, and blood work showed that it was present this time. That's not a slam-dunk for Epstein-Barr as a cause, of course, but I thought it was interesting enough to have the data that I talked to my immunologist about cowriting a paper on it. She demurred, saying that quite a few such papers (where patients by chance had had before-and-after tests) had been published and there wasn't any value in adding another one, since it was pretty common to see the same pattern of Epstein-Barr virus not being there beforehand, and then appearing after in blood work after the onset of symptoms. Fast forward to 2023 and now there's a paper saying that ME/CFS might have a post-viral infection origin.
- whimsicalism 3y ago
  People have been saying this about post-viral sequelae and EBV and CFS for a long time, but the evidence is just not there. EBV is incredibly common, it is not surprising that many who have had ME/CFS would have it. The medical world does not know how to communicate about problems that are likely coproductive of psychological and physical causes, especially in a post-AIDS patient advocacy world, simply because patients do not like hearing that there is anything psychological involved at all.
  - kortex 3y ago
    It's looking like <some stressful assault on the body's immune system> is a necessary but not sufficient condition to developing CFS. Further, there are many events which can serve as triggers. But in the cases where the other prerequisite conditions are met, EBV is usually the causal trigger.
funnym0nk3y 3y ago
I saw a hypothesis (which is older than I thought) about CFS being related to the vagus nerve. At the time I read it, it made sense to me. Basically, an residual infection close to the vagus nerve signals the brain that the body is fighting a serious infection. https://pubmed.ncbi.nlm.nih.gov/23790471/ https://pubmed.ncbi.nlm.nih.gov/23790471/
- IAmGraydon 3y ago
  That's very interesting, and not an explanation I've heard before.
thenerdhead 3y ago
Isn't it pretty well-known that many diseases/disorders are likely from post-viral infection? Howard Bloom who famously had CFS for decades talked about how he had a bad flu that never got better and his long recovery from it. https://medicalerrorinterviews.podbean.com/e/howard-bloom-part-2-einstein-michael-jackson-and-mecfs-how-howard-beat-chronic-fatigue-syndrome/ https://medicalerrorinterviews.podbean.com/e/howard-bloom-pa... Michael J Fox who famously has Parkinson's mentioned being sick in his documentary "Still" while filming "Leo and Me" where other crew members also have Parkinsons: https://en.wikipedia.org/wiki/Leo_and_Me https://en.wikipedia.org/wiki/Leo_and_Me https://www.michaeljfox.org/grant/h5n1-influenza-virus-etiological-agent-parkinsons-disease https://www.michaeljfox.org/grant/h5n1-influenza-virus-etiol... Many people who are suffering with Long Covid CFS are more obvious though. The significant event from their pre/post covid life was a covid infection. It is beyond me how people can deny post viral syndromes. Just about every major virus has documented literature of people suffering. Long covid is putting a flashlight on a real problem. For those more interested in the journey, see https://www.youtube.com/watch?v=VYNMzaZk_iU https://www.youtube.com/watch?v=VYNMzaZk_iU for a great overview.
- downWidOutaFite 3y ago
  It wasn't that well known until the people that have been trying to minimize covid since day 1 started talking about it.
- hirako2000 3y ago
  Why is it such an issue that people deny it? Viruses can cause organ tissue damages, that's enough for me to believe a virus can cause all sort of "syndromes" I'm not on the denier side but harass me with fear, threats, and free movement mandates and I will deny that syndromes even exist.
  - AnimalMuppet 3y ago
    It's an issue when doctors deny it. For many years, for many doctors, that was the case with CFS.
confidantlake 3y ago
Can chronic fatigue type syndrome that only effects you mentally, not physically? I have zero energy to do things that take mental energy unless I take ADD meds and even then it is a struggle. But doing things physically I have no problems. Like to the point I would rather walk a mile somewhere than figure out how to buy a bus ticket in an unfamiliar city.
- IAmGraydon 3y ago
  That sounds like depression.
- tootie 3y ago
  Mental and physical aren't separate. Your brain is part of your body.
- rmorey 3y ago
  That just sounds like ADHD
- kortex 3y ago
  > Like to the point I would rather walk a mile somewhere than figure out how to buy a bus ticket in an unfamiliar city. Sounds like textbook ADHD. Walking a mile is a straightforward task with a known outcome and predictable risk/reward scheme. Figuring out bus ticketing is a novel challenge requiring a certain amount of executive thinking, planning ahead, holding multiple things in working memory, all things which can feel aversive to the ADHD brain.
leetcodesucks 3y ago
[dead]
nradov 3y ago
This is nothing really new. There has been research pointing to this since at least 1988. https://pubmed.ncbi.nlm.nih.gov/3063394/ https://pubmed.ncbi.nlm.nih.gov/3063394/
mxmilkiib 3y ago
Also, in the last decade or so, it turns out like 20% of CFS folk actually have PoTS aka Postural orthostatic Tachycardia Syndrome. I finally got a PoTS diagnosis last year (along with ASD and ADHD), at 39. Lying down for 5 minutes then standing up for 10 - if the pulse gets and remains high but with a low blood pressure, that's the main diagnostic criteria. Symptoms include head rushes, gray outs, brain fog, fainting in like 8%, fatigue, temprature intolerance to hot and cold, cold exteremities, bladder issues e.g. needing to pee more than average ("PoTS bladder"), palpitations as in feeling your pulse (not aythmia) and maybe even rocking/stimming to it (I got great muscle control from trying to cover it up for so long, great for dancing). Things that help are certain postures, staying hydrated, increasing salt intake by x8 to help the body retain water, leggings or compression socks. Apparently there are other drugs, but you will be explaining it to most medical folk you meet. I'm waiting for a cardio referral in the UK, though ultimatly it's an autonomic system issue so I would have thought neurology, but we will live and learn. Possibly maybe I had EDS; zebras keep saying I have such smooth skin and move in a hypermobile way, though I don't pass the standard over-stretch tests, but praying upward behind my back is no problem what-so-ever. https://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome https://en.wikipedia.org/wiki/Postural_orthostatic_tachycard... I've just realised I might have "amplified musculoskeletal pain syndrome" also, which is something I had been planning bringing up. I didn't know how to factor the chronic "unable to ever relax" pain underlying everything in.
- DoreenMichele 3y ago
  Things that help are certain postures, staying hydrated, increasing salt intake by x8 to help the body retain water, leggings or compression socks. That's a lot of salt. Do you also get a lot of respiratory infections?
  - mxmilkiib 3y ago
    "Intravascular volume expansion by salt and water intake: It is suggested that patients with POTS should be encouraged to have a daily oral fluid intake of up to 3 L/day and sodium chloride of up to 8 to 12 g" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10065129/#REF63 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10065129/#REF63 -65 Yeah, I have allergic rhinitis that is arguably chronic, though I'm managing it much better with fexofenadine these past couple of years. Dust from cleaning/being in a space that I haven't had the head to keep properly clean most of the time (ASD/PDA), pollen, and most both cats and dogs :( Some apples can make my mouth tingle in pain for hours. My colds used to always go down to become a chest infection, like 15-+10 years ago. I've the steroid inhaler I've been more consistently taking, again more recently. I don't smoke anymore, but I vape weed (Dynavap). I can have an asthma attack after running 40/50m for the bus, but I can dance sober for several hours on end, so IDK. Edit: oh yeah, I just had nasal septoplasty and turbinate reduction the other weekend, and I get the anti-scar stints out this coming Sunday, which will be fun..!
roody15 3y ago
Epstein Barr Virus and CFS have been linked I believe. The Epstein Barr virus can trigger false positives for mononucleosis and has been shown in some cases to linger and cause chronic symptoms for years.
kortex 3y ago
Also relevant: https://www.sciencealert.com/new-blood-test-for-chronic-fatigue-syndrome-has-91-accuracy https://www.sciencealert.com/new-blood-test-for-chronic-fati... Let's hope this can be replicated and put into practice.
moonlitzxspec 3y ago
Itaconate Shunt Hypothesis is currently being focused on by Robert Phair and Christopher Armstrong in collaboration with Professor Ron Davis's team at Stanford. We have all experienced our Itaconate Shunt pathway being switched on at some point because it is the tiredness feeling of coming down with a flu or bug. The body switches over to amino acids for fuel instead of fat and sugars. You run out of amino acids to burn, quickly, and feel the need to lay down and rest. You cancel that marathon you were about to run, and you even have to give up on walking to the shop for groceries. Itaconate Shunt Hypothesis (PART 1) https://youtu.be/RiVDNhg4l48?t=1816 https://youtu.be/RiVDNhg4l48?t=1816 A metabolic trap could mean people with Chronic Fatigue Syndromes never switch the Itaconate Shunt mechanism off. Or enough cells in their body stay shunted for many years, reducing their daily physical activity and mental concentration levels well below normal functional expectations.

228 points by wglb 3y ago

alexfromapex 3y ago

My money is on Epstein Barr causing it. Even acutely, many are faced with intense fatigue.

rnk 3y ago
There are lots of articles and probably studies that seem to find it a lot. I agree it's pretty likely it's causing some of it at least. Someone in my family has cfs, unrelated to covid afawct, but no one has figured out any cause.
quickthrower2 3y ago
If so, since 90% of people have it [1], avoid it is futile (a bit like avoiding COVID). So the question is how to avoid it causing CFS, or how to get the body out of the CFS state. [1] https://www.ncbi.nlm.nih.gov/books/NBK559285/#:~:text=Epstein%20Barr%20virus%20(EBV)%20is,rare%2C%20but%20important%20to%20recognize https://www.ncbi.nlm.nih.gov/books/NBK559285/#:~:text=Epstei.....
- mschuster91 3y ago
  > If so, since 90% of people have it [1], avoid it is futile (a bit like avoiding COVID) It's not futile. Install proper HEPA air filters in trains and other public transit, provide actual ventilation in public buildings, mandate antiseptic (e.g. part copper) door handles, and especially: provide actual sick leave at work and mandate employers to send sick employees home (and while we're at it, the same for kindergartens and schools)... that would drastically cut down on all kinds of infectious diseases without forcing anyone to wear masks.
  - gmerc 3y ago
    EBS is called the kissing disease for a reason
    - mschuster91 3y ago
      I hope that mRNA technology will soon present a viable EBV vaccine candidate. EBV is implicated in a lot of immune-system-related diseases, but it's so incredibly infectious that it's impossible to get rid of.
    - hinkley 3y ago
      Unlacquered brass handles for all public spaces
cstrahan 3y ago
That’s my guess. Got EBV back in 2015, and spent about a year with debilitating photophobia, visibly bulging lymph nodes, along with a host of symptoms that still haven’t gone away: excruciating joint pain, muscle weakness, headache and brain fog, anhedonia, annihilated sex drive, etc. Trying to manage my symptoms, I got a hormone panel to compare pre-EBV. Testosterone and Estradiol dropped by about 65%, where it remained for 3 years until I convinced a doctor to take that delta seriously. I’m better on TRT now, but I’d say I’m at about a solid 65% of my former self. Joint and muscle pain is gone, but I don’t have the same drive and still struggle with anhedonia. Would love to try a cocktail of things — almost anything really — to feel more alive, but I don’t want to do antidepressants, and I don’t want to be branded “drug seeking”, so I just try to get by for now.
- nick_ 3y ago
  If you haven't already, you could look into trying daily Valacyclovir. Epstein-Barr is one of the HHVs, and may be helped by that drug.
mjhay 3y ago
There's nearly incontrovertible evidence that EBV causes the great majority of multiple sclerosis cases, so it would track.

mchpow 3y ago

I was always under the impression that CFS was a non-specfic set of symptoms; a kind of catch-all categorical bucket for an unknown condition. If that's true, then that post-viral infection origin seems misleading.

astrange 3y ago
It could still be the other way round. (In fact, the other way around is definitely true.)
nirse 3y ago
Why would that be misleading? This seems to be just an attempt to better understand (some of the / potential) causes that unknown condition. Perhaps it doesn't help to diagnose it, as there might not be any direct evidence left in the body to point at the original cause, but in the longer term it certainly helps if you know where to look.
- mchpow 3y ago
  Maybe. It's just that if CFS doesn't point to something real, then that non-real, non-specific thing, having an origin doesn't really make sense. But if it is actually real (and specific), as indicated by another commenter, the origin seems fine. Still seems like there's mixed views in medical community though.
lindsaywaterman 3y ago
MD here - I'd disagree. Although I've heard the same take from many other phsyicisans! Anyone who has worked with the condition (I've had 100s of CFSers by now) knows it's a pretty distinct syndrome. The CFS push-crash cycle especially is quite distinct.
- onlyrealcuzzo 3y ago
  Isn't the push-crash cycle pretty common in people that don't have CFS also?

mjsweet 3y ago

I've battled with CFS/ME multiple times in my life, each triggered by different ailments. First, it was Epstein-Barr at the end of my tenth grade, leading to two solid years of chronic CFS. Then, at 31, Chicken Pox knocked me out for roughly 18 to 24 months. More recently, from January to August 2021, I experienced "Long Covid," and this July, a bout with RSV left me grappling with CFS once again. My symptoms include daytime fatigue, necessitating frequent 40 to 120 minute naps. The brain fog is especially frustrating, causing confusion and lack of focus. This recurring condition has undoubtedly impacted my professional trajectory. Interestingly, the only regimen offering relief has been consuming two crushed garlic cloves daily, which I started two weeks ago. I have hypotheses about why this is effective — possibly related to garlic's blood-thinning properties, but no concrete clinical evidence to back it up.

spuz 3y ago
To what extent does your regimen relieve your symptoms?
- mjsweet 3y ago
  I feel clear headed, no longer require naps in the day time and just seem to have higher energy levels. I got out this weekend and completed some long overdue garden maintenance.
cl3misch 3y ago
Garlic is commonly seen as (strongly) stimulating metabolism, right?
- mjsweet 3y ago
  Look I think so, curious to know if the blood thinning properties of alician would enable to body to better repair itself, improve important metabolic processes?
- Tao3300 3y ago
  It also wards off vampires. Which cause fatigue. Of course I'm joking, but also wondering if there isn't a fragmented memory of a folk remedy buried in that bit of lore, alongside the "people with <disease> hated the smell" explanations.

atleastoptimal 3y ago

[flagged]

tudorw 3y ago
Please think before you write, this is extremely offensive.
- atleastoptimal 3y ago
  I didn't say all or even a majority were exaggerating symptoms, I simply said that many were. Part of my justification was a number of studies which have found psychological distress over catching COVID as a strong predictor of long Covid: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9825049/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9825049/
  - DoreenMichele 3y ago
    That isn't necessarily evidence of psychosomatic cause. I have a genetic disorder that was diagnosed late in life but I knew well before I had a proper diagnosis that I had frail health. I'm cautious and worry about things that others don't worry about because history proves it's a real problem for me, more than average.
  - tauberian77 3y ago
    Thank you for your concern. When I was 17, I developed acute neuropathy after covid which was diagnosed via a biopsy. It manifested as orthostatic intolerance caused by insufficient blood flow to my brain. I have been bedridden for around two years now. I was certainly distressed when I got COVID, largely because of a burning pain emanating from my extremities. My uncle died from autoimmune scleroderma. He also developed Lymphoma, whose pathology we believe began with Epstein-Barr. The prevailing hypothesis is a cross reactive species of auto antibodies to the Angiotensin II Type 1 receptor. I unfortunately have not been able to receive a test for this antibody; however, I did test positive for Alpha and Beta adrenergic autoantibodies along with Muscarinic M2 and M4 autoantibodies targeting the hippocampus of my brain. I managed a borderline positive titer for anti TSHDS antibodies, which are correlated with small fiber neuropathy. Normally, I do not comment, and I specifically made an account to type this message while holding a laptop over my head, a difficult task as you can imagine. The medical community is moving too slow in response to post Covid syndromes. I and all the other people affected with neurologic complications would be most appreciative if you all helped review literature on the immune system. It is an awful lot like debugging code! Right now, I read a section about Janus Kinase and TNF alpha. I believe a medication like baracitinib would do a wonderful job mediating mthe inflammatory response. ICU covid patients typically died from TNF alpha, Interleukin 6, and Cysteinyl Leukotriene 1 mediated by 5 lipoxygenase synthesis from arachidonic acid. All of these biomarkers are elevated in long covid patients. Lastly, covid can actually cause a reactivation of Epstein-Barr and HSV1. Telemisartan is an Angiotensin receptor blocker that can downregulate ACE2 levels in the body and demonstrates a prophylactic effect against covid. If you read this far, I am deeply appreciative. More so than monetary donations, I would be grateful if could spread the message about this disorder.

xbmcuser 3y ago

I did not get covid but did get the vaccines + 2 boosters. I have been feeling tired etc for the last 6+ months turns out because of the work at home etc and my lifestyle I was not getting enough sunlight and had very low vitamin D levels. I am not white so need to spend longer time in sunlight according to my doctor.

harry8 3y ago
Please ask your doctor if supplements are right for you and how much.
- ljf 3y ago
  While supplements can help, nothing been sun on your skin for vitamin D and also for other help benefits - in moderation of course. If someone's doctor has told them to get outside more and they find it is helping, I would not personally recommend someone stays in and just take supplements as an alternative.
  - k_roy 3y ago
    And your statement here is part of the problem. Too many doctors are quick to look at a person and their lifestyle and just say "welp, get outside, get more active, lose some weight, get some sun" There are cases where supplements or medication are completely valid. How many (primarily women, but some men), have hypothyrodism. I know of at least 3 other women in my life who, instead of the doctor listening to their symptoms, just kept recommending "eat better, exercise more, lose weight". No. There was a serious problem. And a problem which literally makes those three things almost impossible. And can be detected with a simple blood draw. One of my friends finally went to an urgent care, they did the test, prescribed levo with a "follow up with her doctor", and the doctor wouldn't renew the prescription because she was just "inactive and retaining water". Of course at this point she switched doctors to one that wasn't a misogynist. Same thing with vitamin D. If you live above 37 degrees of latitude, chances are you are taking vitamin D most of the year because "sun on your skin" just ain't happening.

lindsaywaterman 3y ago

Physician here. Imo CFS is best understood as the endpoint of an evolution within the nervous system that is increasingly called "central sensitization syndrome." (CSS) This syndrome is caused by a chronic dissociative or avoidant stress response, usually having it's origin in early childhood adversity. Prior to developing CFS, most individuals have other manifestations of CSS, such as IBS, chronic pain, TMD, etc. Every new stress, be it a viral syndrome, a grief event, a difficult move of house, what-have-you, can cause CSS to further evolve, eventually arriving at CFS. The average CFSer has 5 other CSS syndromes. Treatment is pacing and mindfulness. This treats the underlying issue of chronic avoidance/dissociation. See cfsselfhelp.org.

akdor1154 3y ago
You could be completely right in some cases, but the way you present this is completely disregarding a professional researcher, peer reviewed and published paper, and honestly quite decent pop sci writeup. I don't think that level of dismissal is fair or respectful unless you accompany it with a relevant criticism of the research itself.
- lindsaywaterman 3y ago
  Ouch, you're coming at me red hot there! To be clear, I think post-viral syndromes are a common "proximal" cause of CFS. If a patient doesn't have an underlying dynamic of chronic dissociation, and doesn't already have a few other CSS syndromes, then I think it's unlikely they will develop CFS as a post-viral syndrome. Cheers.
  - fatfingerd 3y ago
    To me this seems suspiciously like confusing heightened awareness of a problem, or inability to treat it early, with cause. People who seem likely to be diagnosed seem less likely to happily sleep for 12 hours a day for a few weeks after a viral infection, more likely to blame themselves for their state and more stressed by awareness that something is wrong. Naturally, if a rich layabout has the problem anyway, then we can look to their childhood and find at least one trauma.

b800h 3y ago

Largely unrelated, but the thing which leaves me feeling most wiped-out is playing (modern) computer games. I've cut them out completely, as they have no positive benefits and leave me listless and unmotivated.

prawn 3y ago
I wonder if it's because they're so stimulating with minimal physical effort. So, after playing, you hit the real world where achieving anything useful takes mental or physical energy and the contrast is significant.
plugin-baby 3y ago
Any particular class of game? Are we talking AAA console games or casual mobile games, or everything?
- b800h 3y ago
  I was particularly fond of grand strategy.
lindsaywaterman 3y ago
Interesting - yes my take on this is that gaming is a dissociative activity, so typically the symptoms will resolve during the activity, but afterwards will make CSS/CSS worse.
- spinningD20 3y ago
  Serious question: Why would this be any different than reading a book? Is the implied suggestion, that, anything that is not "real" is bad? Does watching a tv show, movie or youtube video, reading a novel, or listening to podcasts of people discussing things (either fictional or "real world") have the same supposed impact? What about listening to a co-worker tell me about their weekend? How do we define a disassociative activity?
  - lindsaywaterman 3y ago

solresol 3y ago

Occasionally I think the medical world has a communication problem. In 1989 I had some blood work done which checked for Epstein-Barr (it wasn't present) for reasons that made sense at the time. Then I got ME/CFS a few weeks later, and blood work showed that it was present this time. That's not a slam-dunk for Epstein-Barr as a cause, of course, but I thought it was interesting enough to have the data that I talked to my immunologist about cowriting a paper on it. She demurred, saying that quite a few such papers (where patients by chance had had before-and-after tests) had been published and there wasn't any value in adding another one, since it was pretty common to see the same pattern of Epstein-Barr virus not being there beforehand, and then appearing after in blood work after the onset of symptoms. Fast forward to 2023 and now there's a paper saying that ME/CFS might have a post-viral infection origin.

whimsicalism 3y ago
People have been saying this about post-viral sequelae and EBV and CFS for a long time, but the evidence is just not there. EBV is incredibly common, it is not surprising that many who have had ME/CFS would have it. The medical world does not know how to communicate about problems that are likely coproductive of psychological and physical causes, especially in a post-AIDS patient advocacy world, simply because patients do not like hearing that there is anything psychological involved at all.
- kortex 3y ago
  It's looking like <some stressful assault on the body's immune system> is a necessary but not sufficient condition to developing CFS. Further, there are many events which can serve as triggers. But in the cases where the other prerequisite conditions are met, EBV is usually the causal trigger.

funnym0nk3y 3y ago

I saw a hypothesis (which is older than I thought) about CFS being related to the vagus nerve. At the time I read it, it made sense to me. Basically, an residual infection close to the vagus nerve signals the brain that the body is fighting a serious infection. https://pubmed.ncbi.nlm.nih.gov/23790471/ https://pubmed.ncbi.nlm.nih.gov/23790471/

IAmGraydon 3y ago
That's very interesting, and not an explanation I've heard before.

thenerdhead 3y ago

Isn't it pretty well-known that many diseases/disorders are likely from post-viral infection? Howard Bloom who famously had CFS for decades talked about how he had a bad flu that never got better and his long recovery from it. https://medicalerrorinterviews.podbean.com/e/howard-bloom-part-2-einstein-michael-jackson-and-mecfs-how-howard-beat-chronic-fatigue-syndrome/ https://medicalerrorinterviews.podbean.com/e/howard-bloom-pa... Michael J Fox who famously has Parkinson's mentioned being sick in his documentary "Still" while filming "Leo and Me" where other crew members also have Parkinsons: https://en.wikipedia.org/wiki/Leo_and_Me https://en.wikipedia.org/wiki/Leo_and_Me https://www.michaeljfox.org/grant/h5n1-influenza-virus-etiological-agent-parkinsons-disease https://www.michaeljfox.org/grant/h5n1-influenza-virus-etiol... Many people who are suffering with Long Covid CFS are more obvious though. The significant event from their pre/post covid life was a covid infection. It is beyond me how people can deny post viral syndromes. Just about every major virus has documented literature of people suffering. Long covid is putting a flashlight on a real problem. For those more interested in the journey, see https://www.youtube.com/watch?v=VYNMzaZk_iU https://www.youtube.com/watch?v=VYNMzaZk_iU for a great overview.

downWidOutaFite 3y ago
It wasn't that well known until the people that have been trying to minimize covid since day 1 started talking about it.
hirako2000 3y ago
Why is it such an issue that people deny it? Viruses can cause organ tissue damages, that's enough for me to believe a virus can cause all sort of "syndromes" I'm not on the denier side but harass me with fear, threats, and free movement mandates and I will deny that syndromes even exist.
- AnimalMuppet 3y ago
  It's an issue when doctors deny it. For many years, for many doctors, that was the case with CFS.

confidantlake 3y ago

Can chronic fatigue type syndrome that only effects you mentally, not physically? I have zero energy to do things that take mental energy unless I take ADD meds and even then it is a struggle. But doing things physically I have no problems. Like to the point I would rather walk a mile somewhere than figure out how to buy a bus ticket in an unfamiliar city.

IAmGraydon 3y ago
That sounds like depression.
tootie 3y ago
Mental and physical aren't separate. Your brain is part of your body.
rmorey 3y ago
That just sounds like ADHD
kortex 3y ago
> Like to the point I would rather walk a mile somewhere than figure out how to buy a bus ticket in an unfamiliar city. Sounds like textbook ADHD. Walking a mile is a straightforward task with a known outcome and predictable risk/reward scheme. Figuring out bus ticketing is a novel challenge requiring a certain amount of executive thinking, planning ahead, holding multiple things in working memory, all things which can feel aversive to the ADHD brain.

leetcodesucks 3y ago

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nradov 3y ago

This is nothing really new. There has been research pointing to this since at least 1988. https://pubmed.ncbi.nlm.nih.gov/3063394/ https://pubmed.ncbi.nlm.nih.gov/3063394/

mxmilkiib 3y ago

Also, in the last decade or so, it turns out like 20% of CFS folk actually have PoTS aka Postural orthostatic Tachycardia Syndrome. I finally got a PoTS diagnosis last year (along with ASD and ADHD), at 39. Lying down for 5 minutes then standing up for 10 - if the pulse gets and remains high but with a low blood pressure, that's the main diagnostic criteria. Symptoms include head rushes, gray outs, brain fog, fainting in like 8%, fatigue, temprature intolerance to hot and cold, cold exteremities, bladder issues e.g. needing to pee more than average ("PoTS bladder"), palpitations as in feeling your pulse (not aythmia) and maybe even rocking/stimming to it (I got great muscle control from trying to cover it up for so long, great for dancing). Things that help are certain postures, staying hydrated, increasing salt intake by x8 to help the body retain water, leggings or compression socks. Apparently there are other drugs, but you will be explaining it to most medical folk you meet. I'm waiting for a cardio referral in the UK, though ultimatly it's an autonomic system issue so I would have thought neurology, but we will live and learn. Possibly maybe I had EDS; zebras keep saying I have such smooth skin and move in a hypermobile way, though I don't pass the standard over-stretch tests, but praying upward behind my back is no problem what-so-ever. https://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome https://en.wikipedia.org/wiki/Postural_orthostatic_tachycard... I've just realised I might have "amplified musculoskeletal pain syndrome" also, which is something I had been planning bringing up. I didn't know how to factor the chronic "unable to ever relax" pain underlying everything in.

DoreenMichele 3y ago
Things that help are certain postures, staying hydrated, increasing salt intake by x8 to help the body retain water, leggings or compression socks. That's a lot of salt. Do you also get a lot of respiratory infections?
- mxmilkiib 3y ago
  "Intravascular volume expansion by salt and water intake: It is suggested that patients with POTS should be encouraged to have a daily oral fluid intake of up to 3 L/day and sodium chloride of up to 8 to 12 g" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10065129/#REF63 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10065129/#REF63 -65 Yeah, I have allergic rhinitis that is arguably chronic, though I'm managing it much better with fexofenadine these past couple of years. Dust from cleaning/being in a space that I haven't had the head to keep properly clean most of the time (ASD/PDA), pollen, and most both cats and dogs :( Some apples can make my mouth tingle in pain for hours. My colds used to always go down to become a chest infection, like 15-+10 years ago. I've the steroid inhaler I've been more consistently taking, again more recently. I don't smoke anymore, but I vape weed (Dynavap). I can have an asthma attack after running 40/50m for the bus, but I can dance sober for several hours on end, so IDK. Edit: oh yeah, I just had nasal septoplasty and turbinate reduction the other weekend, and I get the anti-scar stints out this coming Sunday, which will be fun..!

roody15 3y ago

Epstein Barr Virus and CFS have been linked I believe. The Epstein Barr virus can trigger false positives for mononucleosis and has been shown in some cases to linger and cause chronic symptoms for years.

kortex 3y ago

Also relevant: https://www.sciencealert.com/new-blood-test-for-chronic-fatigue-syndrome-has-91-accuracy https://www.sciencealert.com/new-blood-test-for-chronic-fati... Let's hope this can be replicated and put into practice.

moonlitzxspec 3y ago

Itaconate Shunt Hypothesis is currently being focused on by Robert Phair and Christopher Armstrong in collaboration with Professor Ron Davis's team at Stanford. We have all experienced our Itaconate Shunt pathway being switched on at some point because it is the tiredness feeling of coming down with a flu or bug. The body switches over to amino acids for fuel instead of fat and sugars. You run out of amino acids to burn, quickly, and feel the need to lay down and rest. You cancel that marathon you were about to run, and you even have to give up on walking to the shop for groceries. Itaconate Shunt Hypothesis (PART 1) https://youtu.be/RiVDNhg4l48?t=1816 https://youtu.be/RiVDNhg4l48?t=1816 A metabolic trap could mean people with Chronic Fatigue Syndromes never switch the Itaconate Shunt mechanism off. Or enough cells in their body stay shunted for many years, reducing their daily physical activity and mental concentration levels well below normal functional expectations.