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.
I have this pet theory that CFS/ME is what a lot of long-covid patients are suffering. I knew a few people who have been affected by it, and it really limits them. Just as long-covid seems to.
Most cases of CFS seem to start out as a "post-viral syndrome". Basically people get a virus, recover from the virus but are left with ongoing fatigue symptoms. After six months it's declared to be CFS (CFS isn't a specific disease, it just declares that you've been fatigued for over six months).
So yes, I think many people who've had CFS would say it's a no-brainer that it was related to an infection. In my case I got "mono" (or glandular fever as we call it here) and it turned into CFS for about seven years. But in the end I recovered and I've been fine for nearly a decade now.
No, that's not true at all. Lots of research going on now, but nothing found yet. There has actually been research for years showing autoimmune dysfunction in CFS, but there's no evidence it is causal.
Stress has been shown to trigger autoimmunity, and is known to cause the immune abnormalities seen in CFS. Basically stress causes a shift to Th1-like immunity, which makes it more likely the body will attack healthy cells, as well as impaired NK function.
>I don't think lifestyle and lower stress is necessarily sufficient for everyone to improve
Anecdotal, but I have completely recovered 100% (zero symptoms for 17 years). I've also talked to lots of other people who have recovered. If you're still experiencing CFS, I would say reducing stress (including quitting a stressful job if you're in one), and dealing with any emotional stressors, is the main thing to concentrate on. After that, increase pleasurable physical and mental activities. There's no current drugs or supplements that will help at all (other than perhaps reducing some symptoms).
> one of my friends "had CFS" and was "cured"... she had anaemia
Just so we're clear, this point is not in debate at all. There are indeed many possible causes of fatigue which need to be looked into. I'm sure many of them get lumped into the catch-all category of CFS before someone realizes there is a less obscure cause than EBV/HHV-6 infection.
On the other hand, my case was characterized by two phenomena which, AFAIK, are quite specific for EBV/HHV-6. (And yes, I mean "specific" in the statistical sense: they are rarely associated with any other condition, and thus, as diagnostic cues, would generate few false positives.) The first is the fact that my symptoms began after a flu-like illness, and were clearly not present before that illness. The second is that I would have the symptoms as much as 48 hours after exercise. I'm not a doctor or medical researcher, but I have yet to hear of another disease with that property. Many illnesses make exercise unpleasant, but they tend to do so at the time the exercise is taking place, or right afterwards. A 48-hour delay is bizarre. (My SWAG(†) is that it has to do with the release of growth hormone during the post-exercise recovery process. Growth hormone triggers neurogenesis, among other things, and I suspect that the virus is somehow taking advantage of or interfering with neurogenesis. Just a thought.)
(† SWAG = Scientific Wild-Assed Guess)
> Given that CFS is not defined, I would strongly challenge anyone claiming that such-and-such is "proven" with regards to it.
Fair enough, but cfshacker also has a point: some doctors have tried for years to treat CFS as a "mental illness", with very limited success.
Now to the main point:
> I strongly agree with you that mental illnesses have a very strong physical component, if not being completely physical.
Well, if that's where you're coming from, why even use the term "mental"? If you think that your condition was rooted in a neurotransmitter imbalance or something like that, why not just say that? Then we're not debating whether it had an organic cause, we're just debating what kind of organic cause.
The irony is, I absolutely do believe in psychosomatic illness. But I believe its causes are emotional. If the cause is actually physical, it seems to me this contradicts the very definition of "psychosomatic".
> the onset of ME/CFS is often associated with viral infections by patients
I can personally attest to this. I was an extremely energetic person (shooting straight out of bed in the morning, never requiring daytime naps or rests) until one specific week in April of 1996 when I had what I thought was a mild flu. The post-flu fatigue never really went away. I became acclamatised to it over the years and rarely notice it now (except times like this when I'm reminded that I'm significantly less energetic than the average person). I hope they find a treatment (if not a cure) for this soon. As I understand, some suffers are not as lucky as I am.
Chronic fatigue is a syndrome: a constellation of symptoms of unknown cause. Long covid has a similar description, but with a bright flashing arrow pointing towards a cause. Having experienced year-long brain fog and loss of executive function due to a flu, I'm hoping that a silver lining of covid is that we will have enough data and funding to actually pinpoint and treat the root cause. And, if I allow myself some optimism, it might point us towards drivers behind other syndromes of a similar nature.
Many people describe that their CFS started right after coming down with a virus, so a malfunctioning immune system seems a cofactor. Impaired T cells have been hypothesized..
>>Chronic fatigue syndrome and, now, chronic Lyme disease are probably more related to depression than to any external biological agent like a virus or bacterium.
As someone whose partner has CFS (since she was aged 12) I have to disagree strongly on this, although my experiences are anecdotal I'm more than 99% sure CFS is a physical condition rather than mental.
Having also studied much of the scientific literature of the past few years I'd be strongly critical of your assertion based on the results of any respected doctor or controlled study.
Unfortunately suggesting it's a mental condition has resulted in such helpful suggestions from doctors as "get a new hair cut to cheer you up" which is akin to telling a cancer sufferer that lipstick might help.
I'd be happy to discuss further and provide numerous studies suggesting it is a result of a (most likely) viral infection that has had long term repercussions on the immune system.
There are scammers out there, but it's not the patients or the majority of doctors - at least in the UK.
Disclaimer: I'm currently working on a data gathering problem related to this as a side project with a view to crowdsourced funding.
> Is there evidence of a well-defined physiological mechanism rather than merely being a symptom cluster that might be purely psychological?
Is there evidence of a well-defined psychological mechanism rather than merely a symptom cluster common to autoimmune diseases and various other immune system disorders?
There seems to be a lot more evidence supporting CFS as an autoimmunity than any other avenue for explanation. It appears to be comorbid with numerous kinds of poor immune function, and often occurs after viral infections, frequently Epstein-Barr (so much so that one of its possible incarnations was even called "Post-Viral Fatigue Syndrome"). And like most autoimmune diseases, it favors diagnosis in women.
As one paper puts it as clearly as possible: "The continuing debate as to whether myalgic encephalomyelitis
or postviral syndrome is predominandy organic
or psychological is unhelpful." And that was in 1990; we're even more clear that it has its roots in biology now. The medical community is at a consensus that there's an organic cause, they just don't have enough data collated or a good enough understanding of the immune system and its interaction with the disease process to know what it is. And that's not surprising - rheumatology in the context of autoimmunity is one of the youngest branches of medicine and our understanding of autoimmunity is very much in its infancy. Lupus was known about for centuries, but only conclusively proven to be an autoimmune disease in 1948-49.
Frankly, at this point, with all of the collected evidence, over 9000 different scientific papers and three world-recognized medical agencies (the CDC, the NIH and the Institute of Medicine) in agreement that it's biological, suggesting it's all in the hundreds of thousands of sufferer's heads is pretty insulting. Maybe go educate yourself on the topic before lobbing such accusations?
That's kind of the point. ME/CFS is poorly understood and likely has many causes not directly stemming from viral illnesses. If it existed prior to Covid in seemingly large numbers, it seems pretty likely that people with pre-existing ME/CFS have now decided it's Long Covid, or that the same poorly defined causes have now impacted more people.
For anyone generally curious about the ME/CFS patient experience and state of medicine, there are a couple good articles in The Atlantic[0][1].
For those interested in latest research, Dr. Bhupesh Prusty presented[2] a very plausible hypothesis with detailed evidence[3] of virus-triggered autoimmunity causing mitochondrial dysfunction in endothelial cells (vascular system).
And there's a promising treatment for Long COVID with a study[4] claiming improvement in many symptoms, and describing the targeted mechanism of disease pathology (also vascular system). Needs trials and replication, or until then doctors willing to risk off-label treatment.
> The OP specifically mentioned "immune" and "metabolic" dysfunction, not symptoms.
Fair enough.
> The symptoms, abnormalities, triggers and cures match perfectly with what you would expect from exhaustion due to chronic stress.
Based on your research, what are the cures for "chronic stress"? The treatments discussed in the PACE paper (CBT, GET, etc.)? I'm genuinely interested -- my sister was diagnosed with CFS over a year ago and has made little progress since then.
> This is due to stigma. Indeed, if anything, CFS is good evidence of the strong impact that even a (probably) psychologically derived illness can have on one's physical well-being.
AFAIK there is no strong consensus that (even covid-unrelated) CFS is probably psychosomatic in constrast to, say, immunologic.
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.
Chronic fatigue/myalgic encephalomyelitis, for those who don't want to have to click on the article to find out what it's about. Long covid looks a lot like chronic fatigue, and chronic fatigue is not something that we know how to treat very well, nor have we have a lot of doctors trying to figure it out.
ME/CFS is a chronic condition characterized by debilitating fatigue and, specifically, post-exertional malaise. Patients who suffer from ME/CFS will have very debilitating negative reactions to any exertion past a certain threshold. The negative reaction can be delayed by 24 hours in some and it can be severe enough to make jobs or daily activities anywhere from difficult to nearly impossible.
Importantly, the delayed worsening can clearly be measured by light exercise testing. It isn’t the same as normal post-exercise recovery or soreness. It’s far worse and can even be triggered by strenuous mental activity (perhaps energy expenditure in general).
For many, it has a distinct viral trigger. They can be fine and healthy one week, then become chronic CFS sufferers after an infection with a number of notable viruses (EBV is common).
Sound familiar? It has a lot of parallels to “Long COVID”, but it just never got the same attention because it’s not attached to a global pandemic in the 24/7 news cycle.
> Simply saying 'linked' instead of 'causes' isn't enough to dispel the hallucination, and people are typically aware of this when they write such titles.
I suppose it's possible that I have a blind spot here due to basic statistical literacy, which definitely isn't true of the general audience for these articles. (Note that I'm not implying this is true of you; your complaint about how the general public interprets the article is independent of your own interpretation of it).
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Tangentially, if we take for granted your claim that the article implies that the belief caused the reporting of long covid symptoms: why do you think the article is more consistent with the other direction of causality? Symptoms like cognitive problems, soreness, and fatigue can be devilishly hard to pin down as pathological, which is why CFS has been so tricky a field for so long.
I speak from experience: I've recently started working with an immunologist/CFS specialist after decades of these symptoms, and I'm constantly double-checking my reporting of symptoms against plausible alternative explanations, including psychosomatic and non-pathological causes.
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.
Started a few years ago as a neuroimmune disorder with periodic and horrific OCD, depression, muscular failures, inability to concentrate, ... Much of that has passed, but it has morphed into ME/CFS. That still still seems triggered and/or related to an underlying neuroimmune issue. When the immune system kicks up, an autoimmune condition also ramps up and causes inflammation in the brain (among other things), which in turn leads to all sorts of symptoms. She used to run half marathons but now a flight of stairs are a big challenge.
None of it is well understood and there aren't good treatments. Some treatments help some people, but it is kind of hit or miss and most of the potential treatments aren't cheap.
It is actually similar in many ways to some forms of long covid, so bizarrely, covid and subsequent research may lead to better therapies that could help her as well. At least that's the hope...
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.
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