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Physician here. Imo CFS is best understood as the endpoint of an evolution within the nervous system that is increasingly called "central sensitization syndrome

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.
    - whimsicalism 3y ago
      > To me this seems suspiciously like confusing heightened awareness of a problem, or inability to treat it early, with cause. Heightened awareness of a problem can be related to the cause - these are not distinct. The comorbidities of ME/CFS make it look very similar to known psychosomatic conditions. Researchers who explore psychological-heritable causes have been forced to stop due to death threats.
      - fatfingerd 3y ago
        Sure but if you look at male outcomes, we are clearly ignoring a lot of real health problems that are deadly, so 66% of males ignoring a less than deadly problem that allows 8 hours of work a day seems more likely than a lot of female hypochondriacs to me.
        whimsicalism 3y ago
        This argument could be applied to any condition with psychosomatic indicators. Your suggestion that somatically-involved conditions aren't 'real' is offensive and what gives rise to the stigma that means we can't talk about this in the first place.
        fatfingerd 3y ago
        There's no telling what's real once you are willing to go down that route, least of all a doctors opinion. If someone stops displaying symptoms that could just be a non blinded doctor and a placebo. I think the offense is going there without any double blinded science and then relying on non reproducible fields of research to annoy the patient.
- AussieWog93 3y ago
  >completely disregarding a professional researcher, peer reviewed and published paper As someone who used to be on the track to academia, this is something that more people should do. Most published research is false, and even most of the correct stuff is useless. I'd go so far as to say any research that hasn't directly lead to at least a physical demo being produced can be safely ignored.
  - 7thaccount 3y ago
    I have a similar experience in my industry. Thousands of publications each year from academia totalling billions of dollars in funding with nearly none of it mattering at all. I've lost track of how many times I read a great title to find it had absolutely nothing of value outside of the researcher getting to aggregate some key words for their profile. It's baaaad. There are some occasional gems, but it's like a handful per decade that are of true value with the rest not even worth the kB they take up in storage. I may sound bitter, but when I see the government dollars announced it makes me cringe a little bit as I know there are so many better places for that money.
  - eganist 3y ago
    > As someone who used to be on the track to academia, this is something that more people should do. You're right, and akdor1154 already addressed this in the same breath: > I don't think that level of dismissal is fair or respectful unless you accompany it with a relevant criticism of the research itself. Emphasis mine.
    - quantumwoke 3y ago
      Although I agree that we are framing this thread in the context of the original article, this medical professional is presenting their (experienced) opinion, and GP is not discussing it and instead chooses to require some token criticism of the article. This doesn't seem charitable to someone presenting their professional opinion.
- whimsicalism 3y ago
  I disagree - it is fine to talk about the broader context of research without being either deferential to one datapoint or explicitly refuting that one datapoint. There are lots of other papers fingering EBV as a cause of ME/CFS, but there are many, many papers showing the similarities of the population with this condition and other conditions that have been shown to be psychosomatic, showing correlates between CFS-like conditions and perception of illness as stronger than past EBV infection (something not true of most other illnesses), etc.
- cascades42 3y ago
  I'm a neuroscientist who published on central sensitization and chronic pain. Unfortunately, I was forced into retirement by chronic fatigue syndrome. The linked article and others have convinced me that CFS can be caused by viruses. There's one important and tricky question: is a viral infection necessary to trigger CFS in humans (such as long COVID or in this linked article), or is an extremely stressful series of events (which could include the physical stress of a severe viral infection) sufficient? Giving a certain interpretation of their comment, I think the physician could be stating that they've seen patients with CFS that has been triggered by stressful events alone. I think this can coexist with the linked research if CFS can be triggered by stress OR a virus. When chronic stress is mentioned as a factor, that should not be interpreted as being a psychological predisposition ("it is all in their head"). Instead, it is a predisposition on a cellular level. The brain regions involved in central sensitization are tightly linked with those involved in chronic stress. Animal models of chronic stress lead to central sensitization of pain, as do animal models of chronic illness. Chronic stress causes an immense amount of remodeling in the brain and the rest of the body. Proving or disproving that CFS can be triggered by chronic stress alone is difficult because CFS is a diagnosis of exclusion. Diagnosis can take a long time. We humans are always getting viruses and occasionally enduring stressful life events, so it is difficult to untangle the two. If we look at my personal history, my diagnosis took several years (above average for CFS patients). I can point to 3 stressful life events and 2 viral illnesses that might have preceded CFS onset. The cause for my CFS remains a mystery. Without a mechanism and diagnostic test for CFS, I think this question will remain unanswered. I think it is contentious to say that CFS is an endpoint of central sensitization. It might be, but it also might be related to mitochondrial dysfunction or another mechanism-- too soon to tell, in my opinion. Central sensitization is certainly a component, but I do not think it is proven to be the only component. I should say that I'm extremely biased towards believing in central sensitization as the cause of many things because that was the primary focus of my research. Again, without a mechanism and a diagnostic test for CFS, much is murky. Viral infection can at least be a cause. I think we're far away from having a tidy answer like the story of H. pylori and ulcers though.
  - lindsaywaterman 3y ago
    Nice response thanks for that. I’m also a cfser but can’t really point to any viral thing personally. I appreciate your skeptical eye.
LeonB 3y ago
What is meant by TMD? If it’s “Temporomandibular disorders” do you consider those a manifestation of “css”?
- lindsaywaterman 3y ago
  Yes Temporomandibular disorders are included in the group of Central Sensitivity disorders.
  - hydrok9 3y ago
    Hi Lindsay, please contact me. I have been dealing with health issues since 2019 and what you say about dissassociatiom, tmj, and fatigue/inflammation seems extremely relevant to me. My symptoms seem caused/exacerbated to the extreme by pornography and computer games. I have a long history of dissasociation as do my parents. I would like to discuss this with you as nobody else believes or understands what I have noticed concerning the connection between my physical and psychological symptoms. My email is hydrok9@gmail.com. I tried to message you on hn but wasn't able to. Thanks.
- spondylosaurus 3y ago
  Also curious about this. I'd be shocked if TMJ/TMD was more than incidentally psychological. Mine is definitely a mix of genetics (thanks Dad!) and inflammatory. When I started Humira for unrelated reasons, the painful aspects cleared right up... although as I type this comment I just realized the recent resurgence in pain might have to do with how Humira's been less effective for me lately :P EDIT: Ah, just saw the other reply. Strange.
  - lindsaywaterman 3y ago
    Yes so - I have noticed my patients will often get surprising benefit from some random medication, dietary change, etc. But usually, unless they deal with the underlying emotional dynamic of avoidance/push-through, etc, the improvement will not be resilient. Ie the symptoms return after a while...
willemmerson 3y ago
So you're saying it's all psychological? If this is true, why are so many with ME/CFS/Long COVID responding so well to LDN? I have had ME/CFS for 25 years and also practised mindfulness and pacing all that time yet it did nothing, but when I took LDN it instantly worked.
- baz00 3y ago
  The moment this sort of hypothesis turns up I always crow cite your sources. There's very little academic honesty in the area of psychology, a lot of it being coming up with an idea that sounds about right, finding a minuscule dataset to fit to it and then waving hands around profusely about how it's a breakthrough. Tenuous correlation it is mostly.
  - lindsaywaterman 3y ago
    Yes it's tough, this area of medicine is historically neglected. That's starting to change though. Here are some interesting sources: 1. Neuroscience of dissociation: Bramson, B., Meijer, S., van Nuland, A., Toni, I., & Roelofs, K. (2023). Anxious individuals shift emotion control from lateral frontal pole to dorsolateral prefrontal cortex. Nature Communications |, 14, 1234567890. https://doi.org/10.1038/s41467-023-40666-3 https://doi.org/10.1038/s41467-023-40666-3 2. Using psychophysiologic treatment for long covid and back pain: Donnino, M., Bs, P. H., Mehta Ba, S., Silverman Ba, J., Cabrera Ba, M. J., Yamin, J. B., Mph, B., Ma, R. T., Berg, K. M., Phd, R. E., & Grossestreuer, A. v. (n.d.). Title: Psychophysiologic symptom relief therapy (PSRT) for post-acute sequelae of COVID-19: a non-randomized interventional study. https://doi.org/10.1101/2022.10.07.22280732 https://doi.org/10.1101/2022.10.07.22280732 and Donnino, M. W., Thompson, G. S., Mehta, S., Paschali, M., Howard, P., Antonsen, S. B., Balaji, L., Bertisch, S. M., Edwards, R., Ngo, L. H., & Grossestreuer, A. v. (2021). Psychophysiologic symptom relief therapy for chronic back pain: a pilot randomized controlled trial. PAIN Reports, 6(3), e959. https://doi.org/10.1097/PR9.0000000000000959 https://doi.org/10.1097/PR9.0000000000000959 and Williams, A. C. de C., Fisher, E., Hearn, L., & Eccleston, C. (2020). Psychological therapies for the management of chronic pain (excluding headache) in adults. Cochrane Database of Systematic Reviews, 2020(8). https://doi.org/10.1002/14651858.CD007407.PUB4/MEDIA/CDSR/CD007407/IMAGE_N/NCD007407-CMP-008.06.SVG https://doi.org/10.1002/14651858.CD007407.PUB4/MEDIA/CDSR/CD... as well as a review looking at the connection between early childhood adversity and fibro Varinen, A., Kosunen, E., Mattila, K., Koskela, T., & Sumanen, M. (2017). The relationship between childhood adversities and fibromyalgia in the general population. Journal of Psychosomatic Research, 99, 137–142. https://doi.org/10.1016/J.JPSYCHORES.2017.06.011 https://doi.org/10.1016/J.JPSYCHORES.2017.06.011 there's a lot out there but year the research is still in it's infancy ...
DoreenMichele 3y ago
Pacing would also help the body remove waste from the tissues, so it may actually be physically treating a physical cause, FYI.
- nradov 3y ago
  What is the mechanism of action there? Which specific type of waste?
  - DoreenMichele 3y ago
    In other tissues, muscle action drives the fluid back to the circulatory system. (Remember, the heart is just a big muscle. So this makes perfect sense.) So exercise dramatically increases the rate at which interstitial fluid gets returned to the circulatory system. This means that one of the functions of exercise is "taking out the trash." And this is likely a huge and overlooked factor in why exercise is so beneficial to your health. Different sources cite different rates, but exercise may increase the outflow by as much as eight times the normal speed of outflow via seepage. It's really a big difference. https://news.ycombinator.com/item?id=25427090 https://news.ycombinator.com/item?id=25427090
solresol 3y ago
What you describe does not match my experience at all.
tauberian77 3y ago
In my case, the CFS like syndrome was all in my head in the worst fashion possible. After COVID, I developed a cross reactive species of antibody targeting my hippocampus and the opioid receptors in my brain. I have been bedridden since I was 17. I also manifested severe orthostatic intolerance and peripheral neuropathy that put me in the lowest 1 percent of neurite density. I was diagnosed at Mass General Hospital at a specialty clinic, so I trust the veracity of their claims. The problem with CFS is simply that it is a syndrome. It is far too nebulous a label to be of much use. It describes everything because it describes nothing! I have an autoimmune disorder that debilitates me. I don't particularly care if it is labeled as CFS or small fiber neuropathy. @lindsaywaterman, I am curious about collecting a body of documents on my illness; I would be greatly appreciative if you could contribute your professional experiences dealing with CFS patients whether it began with an illness or was simply an unrelated psychological condition lumped in the same category on account of a superficial similarity in symptoms.
- doingtheiroming 3y ago
  Auto Immune Disorder (IBD in my case) sufferer here. I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body (GI in my case) where the immune system is causing most damage at a given moment who will ask questions about other symptoms that we now have a good idea are likely the result of the same inflammation (depression, joint pain, peripheral neuropathy, CFS, etc. etc. etc.) but at no point, is there a department of immunology that takes over or even contributes. I've worked my way through azathioprine (poisons your bone marrow to reduce white blood cell count - great for getting skin cancer) to vedolizumab which targets a single gut immune system signaling molecule. I'm lucky in that both have induced full remission which means all the inflammation related symptoms go away, not just the colitis. But I know many people who aren't that lucky and who get some symptoms controlled while others continue unabated. And then there are folk like you who seem to get nothing. The immune system in complex in the proper sense but we still treat the problems it causes reductively. Worse, most of the research that is done treats it reductively also. If COVID had a silver lining it was that it seemed immune system research got a couple of decades of research done in two years. But when I'm talking to my GI, I really feel that nothing has changed and that at some point, I'm going to flare again, get deeply depressed, be unable to move properly or exercise, lose feeling in my toes and after the steroids have ruined me a bit more, I'll be stuck on a new IBD drug and will hope for the best. We need these diseases to be treated systemically, as a class and for the immune system to have it's own specialists in research and treatment. They would be able to act as sherpas for sufferers but more importantly, would be a point of nucleation for new ideas about the immune system since they would be exposed to the gamut of problems sufferers face. It makes me angry, which is probably a flare-risk factor...
mercer 3y ago
well I do a lot of pacing, so at least I have that covered...
Madmallard 3y ago
Sounds like a really bad explanation that has 0 root in physiology. I have CFS and I had a cardiac stress test and my VO2 max is 20, despite only being 33 years old. It's literally half of what it should be for my age. That's worse than having heart failure. I have a severely impaired lactate threshold and severe exercise intolerance. The other people I know are similar. Autonomic dysfunction has roots in chronic mitochondrial dysfunction. My urine malondialdehyde levels are off the charts high. All this excessive oxidative stress and cellular respiration starts shutting down everywhere. I have been walking miles per day for a long time now trying to alleviate it and I still cannot run or do any intense exercise. Toxic insults, genetic vulnerabilities, antibiotics that induce mitochondrial dysfunction, and many other things cause these insults. I've talked with others that had their mitochondria tested via mass spectroscopy and there's loss of ATP compared to healthy controls and blocked active sites. Our toxic environment and lifestyles and drugs are ruining everyone's physiology. It's really depressing seeing doctors just not remember anything from their schooling and come up with really ignorant and patient-harmful perspectives on chronic disease processes ruining society in 2023. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4136529/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4136529/ https://pubmed.ncbi.nlm.nih.gov/23825301/ https://pubmed.ncbi.nlm.nih.gov/23825301/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6182158/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6182158/ https://www.sciencedaily.com/releases/2018/10/181001101943.htm https://www.sciencedaily.com/releases/2018/10/181001101943.h...
- lindsaywaterman 3y ago
  I'm really sorry you're suffering so much with this. As a 33 year old a ME/CFS diagnosis represents such a loss. I should know as I got CFS as 32! Now after recovering myself and working with 100s of pts, ... well I have my opinions. I def think there is mitochondrial and other physiology involved so in that I agree with you. I'd just say - try some pacing, see if you can get into the mindfulness. Maybe it will help!
  - Madmallard 3y ago
    the skiddishness develops as a protective mechanism for the organism and is a symptom of the fundamental problem but not that problem itself
beaker52 3y ago
Anecdotally, my ex-wife suffered from CFS. She’d get bouts whenever she needed to do something she didn’t particularly want to do, to the point of predictability. She’d lost all ability to challenge her response to these kinds of situations.
interpenetrate 3y ago
This is my first time hearing "central sensitization syndrome." I know back ~5 years ago John Sarno's "tension myoneural syndrome" was still the dominant diagnosis in the self-help circles of mindbody illness, and it at least had the mechanism of repression to enrich its explanatory power. Still a far cry from the richness of psychoanalytic theory, but at least it was a move in the right direction after such an epic retreat from Freud. Central sensitization syndrome seems like such a concession to the medical model, which I guess puts it in alignment with the poverty of therapy ("mindfulness," etc.).
- lindsaywaterman 3y ago
  Yes, there's a lot of terminology out there to describe this constellation of symptoms/the process of CSS. The sarno stuff is getting a lot more attention these days as "psychopysiologic" therapy. Things are moving in a good direction and I'm hopefull that repression will be characterized neurophysiologically. See the references I posted to another comment.
  - interpenetrate 3y ago
    Thanks for the articles, I'll have to catch up.
experimenting 3y ago
Chronic fatigue syndrome resulting from SARS-2 infection should be contextualized and understood from chronic fatigue syndrome resulting from original SARS from 2003. Presentation of which should be different from what you see in practice. - An exploratory study of nurses suffering from severe acute respiratory syndrome (SARS) - Long-term Psychological and Occupational Effects of Providing Hospital Healthcare during SARS Outbreak - Mental Morbidities and Chronic Fatigue in Severe Acute Respiratory Syndrome Survivors: Long-term Follow-up - Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study
aestetix 3y ago
I have two questions for you. First, do you have any opinion on prescripting valciclovir? Apparently some ME/CFS presentations are linked to herpes, and taking valtrex significantly mitigates symptoms. However, in order for this to be effective, it needs to be taken in doses similar to truvada or viramune, not as a short term fix for a herpes outbreak. Second, any opinion on Bhupesh Prusty's work, specifically regarding fibernectin and a potential biomarker being in bone marrow?
- lindsaywaterman 3y ago
  Thanks for these - don't have an opinion on either but will look into. Broadly, I think immune dysfunction is a feature of most cfs so there is often a positive EBV test, or HSV test. I suspect this is more "downstream" than causative of CFS. However, it may be that there is a biomarker in the mitochondrial function, bone marrow etc...I hope one is found!
  - smearth 3y ago
    Why is the medical profession obsessed with biomarkers but not the next optimal step in patient treatment plans? Root cause analysis of dysfunction in complex dynamic systems is a waste of energy. Someone has the biomarker but they are a heroin addict which confers them a protective mechanism. What then? If you have 5 heroin addicts with similar symptoms you can just experiment with likely beneficial next treatment steps. Then let machine learning track the treatment response patterns and reccomend next treatment steps. Grouping health histories and symptons then recording responses to treatment plans then using machine learning to recommend next treatment steps is - surely better than searching for biomarkers so Drs can stick their hands up faster. Rockefeller gave us the Johns Hopkin Medical System , Can’t Bill Gates give us the complex chronic illness extension? Why don’t Doctors have a 300 question questionaire for patients covering all aspects of the patients health? You could then group the patients into health dopplegangers. No need for biomarkers. Combine the good part of alternative medicine ( carefully understanding the patients symptons) with machine learning. There’s 8 billion humans. There are alot of sympton dopplegangers out there to experiment and record the effects of next treatment steps on. Medical professionals are obsessed with being trivial pursuit champions and seem to lose sight of the fact that they’re often invited to play invisible bridge. It is fantastic that they are great at trivial pursuit (The Johns Hopkin system is a modern marvel) and they do untold good above and beyond the measure of most citizens and far far more than myself but doing good doesn’t cure complex chronic illnesses. (I admire Doctors). But it’s frustrating that we have to pretend that because Dr’s are great in one area (acute medicine) that the greatness translates to other areas. The halo effect is really strong. Look up the research for recovery rates from cfs. Abysmal.
andreareina 3y ago
This sounds like "it's all in their head" with extra steps and disregards findings of actual physiological differences in people with ME/CFS.
- whimsicalism 3y ago
  The mind-body dualism is not real and mind & body symptoms can be co-productive. That said, the evidence of 'actual physiological differences in people with ME/CFS' is not very strong at all (relative to the amount of scrutiny this problem has received) and research on other hypotheses has been halted numerous times due to death threats.
  - wtetzner 3y ago
    Why were there death threats?
    - whimsicalism 3y ago
      Here is an article for context: https://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis https://www.theguardian.com/society/2011/aug/21/chronic-fati... Anything with somatic involvement is heavily stigmatized in anglo culture, so people will respond with violence.
      - incangold 3y ago
        Alternatively, sick patients desperate to get better have been written off or abused by their doctors for decades and that makes people angry. Here’s a story of a girl who was made permanently worse after her condition was treated as psychosomatic and she was encouraged to gradually increase her activity. On autopsy her spinal nerves were lit up with inflammation: https://www.bbc.co.uk/news/health-44969741 https://www.bbc.co.uk/news/health-44969741 Here’s another of a Danish girl who was taken from her parents and returned as a husk of her former self after legal challenge: https://me-pedia.org/wiki/Karina_Hansen https://me-pedia.org/wiki/Karina_Hansen There are thousands of stories of similar neglect. I don’t know a single ME/CFS patients who would care if their condition was somatic if treating it as such was effective. People just want to get better. Patients undergo treatment on the basis that it’s a somatic illness, it doesn’t work or makes them worse, and then they discover how few people there are looking for alternative approaches, and how flawed the studies supporting their treatment were. I am curious what your background is. Are you an ME patient, or a doctor, or…?
ajb 3y ago
It seems dodgy to talk about "chronic avoidance/dissociation" being the "underlying issue". The word "underlying" is usually used to refer to the cause, when it's clearly a response. I think this will result justified distrust of your advice, despite your experience.
- lindsaywaterman 3y ago
  You’re totally right that worse somatic symptoms create a viscipus cycle of avoidance and worsening symptoms. I do think that a chronic pattern of avoidance is what causes somatizing in the first place tho. Peace.
  - smearth 3y ago
    You might think that but it doesn’t heal anyone. Recovery rates for cfs are abysmal, I’m surprised you aren’t ashamed of your profession’s performance in this area. You seem comfortable placing responsibility for the illness on your patients “avoidance”. Yet it is initiated by a virus and everyone has different levels of mitochondrial density, resilience and health and different inflammatory cascades. “Avoidance” of what? The medical profession has a chronic pattern of avoiding the fact they can’t heal anything involving more than about 4 variables. Explain how vitamin d, k, and serum ferritin interact in bone marrow please Doc or cholesterol’s role in cellular permeability as an immune defense or a vitamin D deficiencies effect on the permeability of cartilage and subsequent concentrations of potassium in the inner ears please doc, or latent hibernation responses, or the effect of obstetrics on the mitochondrial health of a population, or unknown pathogens or a combination of all of those things. Because any combination of a breakdown in those things could be contributors to the fatigue you’ve attributed to avoidance yet your profession has avoided researching all of them. Your profession avoids the fact that medical research is mainly focused on fast financial returns. I do think there is a chronic pattern of some doctors avoiding shame at their self-perceived inadequacies caused by their medical school trivial pursuit trauma conditioning that is useless for complex problem solving and then projecting that shame onto their patients in order to minimise the cognitive dissonance surrounding their ineffective treatment plans for chronic conditions . I cured my chronic fatigue - no thanks to your professions expertise - the avoidance was a necessary part of the cure while my body healed. Some times people have bad luck. It is unavoidable.
smearth 3y ago
I think conditioning medical students to race other medical students to label health problems quickly- efectively turning medical school into a sleep deprived game of trivial pursuit for competitive, high IQ, mentally resilient, energetic people - only prepares those people to heal simple medical conditions involving 1 or 2 body systems. This functionality is becoming largely replaceble by llm’s who are also competent at that level of system complexity. The leading medical solution for CFS is pacing and a web link. Chatgpt could do that. Once you are past a certain level of system complexity - root cause analysis becomes useless as changing one part of the system affects the other parts unpredictably. I am diagnosed with CFS. Didn’t seek the diagnosis, denied it initially which is not the norm.I now pretend I don’t have it as that is the best way to cure it. But beating it was hell as you literally get given an A4 sheet of paper explaining the condition when diagnosed. And your brain is exhausted after reading the sheet. But that is all you have. So you are supposed to take that A4 sheet of paper and troubleshoot your way out of the condition when the instructions on the A4 sheet don’t even work. The best way I can describe it is you find yourself in a shame riddled labyrinth, your brain doesn’t work, you are tired and in pain and you are told to accept your new normal. There are ways out of the labyrinth. A doctor doesn’t have the map though. The best way to describe chronic fatigue is extreme sensitivity to over exertion. You walk to the mailbox and 24 to 72 hours later your body reacts like you’ve run the boston marathon and the mind reacts like you’ve just pulled an all nighter to manually sort 7 tabs of 3 columns and 10,000 rows of a spreadsheet on a 17 inch monitor under time pressure while hung over, 3 days into the flu in order to resurrect hitler. CFS exhaustion and brain fog can get triggered by any stress response. And it kicks in 24 to 72 hours after stress exposure. The Doc says pacing and mindfullness will save you. Except it won’t. The body can get stuck in unhealthy stable states. I always encourage people to look at the roche biochemistry chart (with about the same success rate as treatment plans for CFS) to understand that the body can be hypersensitive to overexertion (mental or physical) for an infinite number of combinations. Fortunately there are a quite a number of things that you can do to escape the labyrinth. - Explain to anyone that cares that there is a medical field dedicated to assessing levels of debilitation and that cfs is as debilitating as cancer. (Very few people care) - get stable accommodation. - Get a comfortable supportive bed to convalesce in. - Eat a diet that minimises inflammation - deeply boiled veges, rice, potatoe or sweet potatoe, grass/algal fed free range protein, olive oil. Maintain steady blood sugar. - Body strength train. - Sort out a vitamin and supplement regime with a genetic analysis. - Take an anger management course to understand the anger of others. -Understand pain - the curable app on chronic pain management is highly beneficial. - Learn to forgive. Resentment ruins health. - Get a career you are capable of. Aim low. - Get regular physical activity. - Perform improvisational comedy to condition the mind to cope with an onslaught of public social pressure. - Pretend you don’t have chronic fatigue syndrome. What doctors get wrong ( it is hard for them to comprehend the condition as most aren’t susceptible as they were tough enough to get through medical school) is that chronic avoidance is the right strategy until your body can cope with stress without fatiguing. It isn’t all in your head. I’d say ability to sideplank and neck strength are probably two of the most important recovery metrics. Drs don’t understand the psycho-somatic balance of the illness. There is a psychological component but it is a minor component and is driven by physical constraints. The sad thing is that cfs is quite treatable but the medical profession says pacing and mindfulness is all one needs to cure something that is as debilitating as cancer. You don’t need to be mindful to beat chronic fatigue syndrome. I think sarcasm is more beneficial when coping with a bleak future. And I really like and admire Doctors - it’s not their fault that their system is terrible at creating healing treatment plans for complex chronic health conditions.
pjc50 3y ago
Hmm. The argument is that it lies within the nervous system (physically), but then you mention avoidance/dissociation (psychological)? This reminds me of a lot of physical/psychological/"it's all in your head" discussions with various sorts of CFS sufferer, most of whom have serious problems getting anyone to take seriously the possibility that it might not be all in your head. https://www.cfsselfhelp.org/pacing-tutorial https://www.cfsselfhelp.org/pacing-tutorial reminds me of what the livejournallers called "spoon theory". In both cases the observation is that exceeding one's limits can cause a "crash" of much worsened symptoms. At least it recognizes PEM and doesn't recommend blindly applying graduated exercise therapy. Do you have any good research on ME/CFS biomarkers?
- Izkata 3y ago
  > The argument is that it lies within the nervous system (physically), but then you mention avoidance/dissociation (psychological)? Psychosomatic exists between these two, which I think is what they're describing.
  - pjc50 3y ago
    .. but is a really poorly understood (set of) mechanisms?
- lindsaywaterman 3y ago
  Yes everyone is stuck in mind/body duality. From a neuroscience perspective all psychology is instantiated through the nervous and endocrine systems. So it’s reasonable to me that a habit of mind such as chronic dissociation - could have an outcome in physiology such as cfs. Like you I am patiently awaiting biomarkers or other reliable indicators.
  - pixl97 3y ago
    The idea of mind body duality is crazy to me, yet I see so many people kind of stuck on it. If you take a modern computer controlled car and start changing other parts of it, such as the tires, fuel or even something like a spark plug starting to go bad, the computer in the car has to adjust itself to maintain its performance envelope. Change the system enough and the computer will no longer be able to compensate and likely throw some error codes in your direction. And the car, compared to the human body, is a much simpler system with much more discrete and well defined parts. The mind/body integration is far more complex. The control systems to maintain homeostasis without ones organs demands killing off the rest of the body are truly something to behold.
_yb2s 3y ago
How does this theory line up with the my experience, which seems to be similar to a lot of people with CFS: I had high energy levels until I suddenly got sick, and had a mild fever for about a day. After that I had the sort of fatigue one feels when having the flu, except it lasted for about 8 months, and then gradually lifted. After that my energy levels totally recovered and stayed normal for over a decade. All tests, including psychiatric evaluation were normal so it was considered CFS.
- lindsaywaterman 3y ago
  Yes that’s pretty typical. Some people go in stepwise, some go in all at once. I think you got lucky with your complete recovery, although that is common after about a year for long Covid in particular.
- martindbp 3y ago
  I've had constant brain fog / fatigue for the last 6 months after a brief stomach flu. Got a tip to try the sauna for 3 days a week, which apparently doubles human growth hormone production. After two weeks of this I've finally had 5 days in a row where I don't feel tired. I still need to sleep more than usual, but before I could sleep 10 hours and still feel very tired, now I feel great after 9 hours. The person who told me this had a patient who lost her sense of smell after Covid, and it wouldn't come back. It came back after a single session in the sauna.
  - agos 3y ago
    as far as low risk/low cost treatment options to try go, sauna sounds pretty great
    - martindbp 3y ago
      Yes, gyms tend to have them here, but we're a very sauna dense country
Llamamoe 3y ago
What you're looking at is people with really bad gut microbiomes or other ongoing infections, not "CSS" - the behavior you're describing is called sickness behavior[1] and is produced by ongoing infections and blood infiltration by bacterial toxins like LPS (which coincidentally is used to induce mouse models of depression) Rhetoric like yours is why most chronically ill people suffer for years and decades before getting any kind of diagnosis or treatment at all. [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8960409/?report=classic https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8960409/?report...
- lindsaywaterman 3y ago
  Well - I myself had cfs and found that pacing and mindfulness really helped! I think these approaches have been empowering for both myself and hundreds of my patients. And there is some clinical research there to back my opinions up. however I am always open to and hopeful that other approaches like those that go via the microbiome, will be helpful.
  - Llamamoe 3y ago
    I believe you, but at the same time you have to take the correction for the fact that humans are storytelling creatures- we correlate our life experiences with our internal experience and spin them into stories by instinct- I've never met anyone who wasn't convinced their illness was related to life events and mindset for a long while before stumbling onto a diagnosis. So I always wonder, are we seeing successful treatment of somatic complaints, or are we seeing regression to the mean spun into a story, or perhaps both?
    - lindsaywaterman 3y ago
      Reasonable question! I ask myself the same. Always good to open to other points of view!
y-c-o-m-b 3y ago
You appear to be speaking definitively as if you're fully devoted to this conclusion, even though the evidence is shaky at best. This is precisely why there's so much vitriol towards physicians when dealing with neurological symptoms. It's also why people flock to sketchy naturopaths and "alternative medicine" that peddle hundreds of dollars of snake oil supplements. We should be exhausting and excluding all physiological causes before jumping to the psychiatric model. If you truly believe this, then your duty as a provider is to refer the patient to someone who is qualified to address the mental health of patients - a psychologist. Refrain from labeling your patients with this condition, as that will only burn the patient-provider relationship more and will lead to further distrust in the medical community. Regardless of the origins of CFS, it's important that patients have professional mental health resources that can help them navigate the stress and anxiety around their disability. Here is some research which discusses how providers may be mislead into raising concerns over psychiatric/somatic disorders due to the lack of evidence on conventional diagnostics. In this research paper, patients experienced MS symptoms and appear to have normal conventional MRIs, but further analysis with advanced MRI techniques reveals inflammation in the CNS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5880628 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5880628 . This highlights how important it is to understand we have not exhausted our diagnostic potential and should be cautious about making claims without solid evidence. EDIT - also since you're using your credentials as a physician here, do you mind sharing what area of practice you're in?
npunt 3y ago
sigh no, this is not the generally recognized understanding of MECFS, just one hypothesis, and one that better explains fibro/pain [1]. It's also a conclusion not too distant from the 'its in your head' concept that has held back research in this field for decades. A more recent hypothesis with some experimental evidence is related to ATP production issues, specifically the itaconate shunt. See this overview from MECFS expert Ron Davis filmed last week [2] Disruptions to a healthy gut microbiome is another hypothesis that has a lot of interesting results. I'm involved in a study on this [3] Saying 'I'm a physician, its best understood as...' suggests a level of certainty to a disease whose underlying causes are unclear and the subject of active research. It would be an extreme disservice to MECFS patients to just say 'do pacing and mindfulness' and not explore other very promising treatments. That said, pacing is essential and CSS is worthy of additional study. [1]: https://me-pedia.org/wiki/Central_sensitization https://me-pedia.org/wiki/Central_sensitization [2]: https://www.youtube.com/watch?v=7inKF32vtl8 https://www.youtube.com/watch?v=7inKF32vtl8 [3]: https://remissionbiome.org https://remissionbiome.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.
  - whimsicalism 3y ago
    > To me this seems suspiciously like confusing heightened awareness of a problem, or inability to treat it early, with cause. Heightened awareness of a problem can be related to the cause - these are not distinct. The comorbidities of ME/CFS make it look very similar to known psychosomatic conditions. Researchers who explore psychological-heritable causes have been forced to stop due to death threats.
    - fatfingerd 3y ago
      Sure but if you look at male outcomes, we are clearly ignoring a lot of real health problems that are deadly, so 66% of males ignoring a less than deadly problem that allows 8 hours of work a day seems more likely than a lot of female hypochondriacs to me.
      - whimsicalism 3y ago
        This argument could be applied to any condition with psychosomatic indicators. Your suggestion that somatically-involved conditions aren't 'real' is offensive and what gives rise to the stigma that means we can't talk about this in the first place.
        fatfingerd 3y ago
        There's no telling what's real once you are willing to go down that route, least of all a doctors opinion. If someone stops displaying symptoms that could just be a non blinded doctor and a placebo. I think the offense is going there without any double blinded science and then relying on non reproducible fields of research to annoy the patient.
AussieWog93 3y ago
>completely disregarding a professional researcher, peer reviewed and published paper As someone who used to be on the track to academia, this is something that more people should do. Most published research is false, and even most of the correct stuff is useless. I'd go so far as to say any research that hasn't directly lead to at least a physical demo being produced can be safely ignored.
- 7thaccount 3y ago
  I have a similar experience in my industry. Thousands of publications each year from academia totalling billions of dollars in funding with nearly none of it mattering at all. I've lost track of how many times I read a great title to find it had absolutely nothing of value outside of the researcher getting to aggregate some key words for their profile. It's baaaad. There are some occasional gems, but it's like a handful per decade that are of true value with the rest not even worth the kB they take up in storage. I may sound bitter, but when I see the government dollars announced it makes me cringe a little bit as I know there are so many better places for that money.
- eganist 3y ago
  > As someone who used to be on the track to academia, this is something that more people should do. You're right, and akdor1154 already addressed this in the same breath: > I don't think that level of dismissal is fair or respectful unless you accompany it with a relevant criticism of the research itself. Emphasis mine.
  - quantumwoke 3y ago
    Although I agree that we are framing this thread in the context of the original article, this medical professional is presenting their (experienced) opinion, and GP is not discussing it and instead chooses to require some token criticism of the article. This doesn't seem charitable to someone presenting their professional opinion.
whimsicalism 3y ago
I disagree - it is fine to talk about the broader context of research without being either deferential to one datapoint or explicitly refuting that one datapoint. There are lots of other papers fingering EBV as a cause of ME/CFS, but there are many, many papers showing the similarities of the population with this condition and other conditions that have been shown to be psychosomatic, showing correlates between CFS-like conditions and perception of illness as stronger than past EBV infection (something not true of most other illnesses), etc.
cascades42 3y ago
I'm a neuroscientist who published on central sensitization and chronic pain. Unfortunately, I was forced into retirement by chronic fatigue syndrome. The linked article and others have convinced me that CFS can be caused by viruses. There's one important and tricky question: is a viral infection necessary to trigger CFS in humans (such as long COVID or in this linked article), or is an extremely stressful series of events (which could include the physical stress of a severe viral infection) sufficient? Giving a certain interpretation of their comment, I think the physician could be stating that they've seen patients with CFS that has been triggered by stressful events alone. I think this can coexist with the linked research if CFS can be triggered by stress OR a virus. When chronic stress is mentioned as a factor, that should not be interpreted as being a psychological predisposition ("it is all in their head"). Instead, it is a predisposition on a cellular level. The brain regions involved in central sensitization are tightly linked with those involved in chronic stress. Animal models of chronic stress lead to central sensitization of pain, as do animal models of chronic illness. Chronic stress causes an immense amount of remodeling in the brain and the rest of the body. Proving or disproving that CFS can be triggered by chronic stress alone is difficult because CFS is a diagnosis of exclusion. Diagnosis can take a long time. We humans are always getting viruses and occasionally enduring stressful life events, so it is difficult to untangle the two. If we look at my personal history, my diagnosis took several years (above average for CFS patients). I can point to 3 stressful life events and 2 viral illnesses that might have preceded CFS onset. The cause for my CFS remains a mystery. Without a mechanism and diagnostic test for CFS, I think this question will remain unanswered. I think it is contentious to say that CFS is an endpoint of central sensitization. It might be, but it also might be related to mitochondrial dysfunction or another mechanism-- too soon to tell, in my opinion. Central sensitization is certainly a component, but I do not think it is proven to be the only component. I should say that I'm extremely biased towards believing in central sensitization as the cause of many things because that was the primary focus of my research. Again, without a mechanism and a diagnostic test for CFS, much is murky. Viral infection can at least be a cause. I think we're far away from having a tidy answer like the story of H. pylori and ulcers though.
- lindsaywaterman 3y ago
  Nice response thanks for that. I’m also a cfser but can’t really point to any viral thing personally. I appreciate your skeptical eye.

LeonB 3y ago

What is meant by TMD? If it’s “Temporomandibular disorders” do you consider those a manifestation of “css”?

lindsaywaterman 3y ago
Yes Temporomandibular disorders are included in the group of Central Sensitivity disorders.
- hydrok9 3y ago
  Hi Lindsay, please contact me. I have been dealing with health issues since 2019 and what you say about dissassociatiom, tmj, and fatigue/inflammation seems extremely relevant to me. My symptoms seem caused/exacerbated to the extreme by pornography and computer games. I have a long history of dissasociation as do my parents. I would like to discuss this with you as nobody else believes or understands what I have noticed concerning the connection between my physical and psychological symptoms. My email is hydrok9@gmail.com. I tried to message you on hn but wasn't able to. Thanks.
spondylosaurus 3y ago
Also curious about this. I'd be shocked if TMJ/TMD was more than incidentally psychological. Mine is definitely a mix of genetics (thanks Dad!) and inflammatory. When I started Humira for unrelated reasons, the painful aspects cleared right up... although as I type this comment I just realized the recent resurgence in pain might have to do with how Humira's been less effective for me lately :P EDIT: Ah, just saw the other reply. Strange.
- lindsaywaterman 3y ago
  Yes so - I have noticed my patients will often get surprising benefit from some random medication, dietary change, etc. But usually, unless they deal with the underlying emotional dynamic of avoidance/push-through, etc, the improvement will not be resilient. Ie the symptoms return after a while...

willemmerson 3y ago

So you're saying it's all psychological? If this is true, why are so many with ME/CFS/Long COVID responding so well to LDN? I have had ME/CFS for 25 years and also practised mindfulness and pacing all that time yet it did nothing, but when I took LDN it instantly worked.

baz00 3y ago
The moment this sort of hypothesis turns up I always crow cite your sources. There's very little academic honesty in the area of psychology, a lot of it being coming up with an idea that sounds about right, finding a minuscule dataset to fit to it and then waving hands around profusely about how it's a breakthrough. Tenuous correlation it is mostly.
- lindsaywaterman 3y ago
  Yes it's tough, this area of medicine is historically neglected. That's starting to change though. Here are some interesting sources: 1. Neuroscience of dissociation: Bramson, B., Meijer, S., van Nuland, A., Toni, I., & Roelofs, K. (2023). Anxious individuals shift emotion control from lateral frontal pole to dorsolateral prefrontal cortex. Nature Communications |, 14, 1234567890. https://doi.org/10.1038/s41467-023-40666-3 https://doi.org/10.1038/s41467-023-40666-3 2. Using psychophysiologic treatment for long covid and back pain: Donnino, M., Bs, P. H., Mehta Ba, S., Silverman Ba, J., Cabrera Ba, M. J., Yamin, J. B., Mph, B., Ma, R. T., Berg, K. M., Phd, R. E., & Grossestreuer, A. v. (n.d.). Title: Psychophysiologic symptom relief therapy (PSRT) for post-acute sequelae of COVID-19: a non-randomized interventional study. https://doi.org/10.1101/2022.10.07.22280732 https://doi.org/10.1101/2022.10.07.22280732 and Donnino, M. W., Thompson, G. S., Mehta, S., Paschali, M., Howard, P., Antonsen, S. B., Balaji, L., Bertisch, S. M., Edwards, R., Ngo, L. H., & Grossestreuer, A. v. (2021). Psychophysiologic symptom relief therapy for chronic back pain: a pilot randomized controlled trial. PAIN Reports, 6(3), e959. https://doi.org/10.1097/PR9.0000000000000959 https://doi.org/10.1097/PR9.0000000000000959 and Williams, A. C. de C., Fisher, E., Hearn, L., & Eccleston, C. (2020). Psychological therapies for the management of chronic pain (excluding headache) in adults. Cochrane Database of Systematic Reviews, 2020(8). https://doi.org/10.1002/14651858.CD007407.PUB4/MEDIA/CDSR/CD007407/IMAGE_N/NCD007407-CMP-008.06.SVG https://doi.org/10.1002/14651858.CD007407.PUB4/MEDIA/CDSR/CD... as well as a review looking at the connection between early childhood adversity and fibro Varinen, A., Kosunen, E., Mattila, K., Koskela, T., & Sumanen, M. (2017). The relationship between childhood adversities and fibromyalgia in the general population. Journal of Psychosomatic Research, 99, 137–142. https://doi.org/10.1016/J.JPSYCHORES.2017.06.011 https://doi.org/10.1016/J.JPSYCHORES.2017.06.011 there's a lot out there but year the research is still in it's infancy ...

DoreenMichele 3y ago

Pacing would also help the body remove waste from the tissues, so it may actually be physically treating a physical cause, FYI.

nradov 3y ago
What is the mechanism of action there? Which specific type of waste?
- DoreenMichele 3y ago
  In other tissues, muscle action drives the fluid back to the circulatory system. (Remember, the heart is just a big muscle. So this makes perfect sense.) So exercise dramatically increases the rate at which interstitial fluid gets returned to the circulatory system. This means that one of the functions of exercise is "taking out the trash." And this is likely a huge and overlooked factor in why exercise is so beneficial to your health. Different sources cite different rates, but exercise may increase the outflow by as much as eight times the normal speed of outflow via seepage. It's really a big difference. https://news.ycombinator.com/item?id=25427090 https://news.ycombinator.com/item?id=25427090

solresol 3y ago

What you describe does not match my experience at all.

tauberian77 3y ago

In my case, the CFS like syndrome was all in my head in the worst fashion possible. After COVID, I developed a cross reactive species of antibody targeting my hippocampus and the opioid receptors in my brain. I have been bedridden since I was 17. I also manifested severe orthostatic intolerance and peripheral neuropathy that put me in the lowest 1 percent of neurite density. I was diagnosed at Mass General Hospital at a specialty clinic, so I trust the veracity of their claims. The problem with CFS is simply that it is a syndrome. It is far too nebulous a label to be of much use. It describes everything because it describes nothing! I have an autoimmune disorder that debilitates me. I don't particularly care if it is labeled as CFS or small fiber neuropathy. @lindsaywaterman, I am curious about collecting a body of documents on my illness; I would be greatly appreciative if you could contribute your professional experiences dealing with CFS patients whether it began with an illness or was simply an unrelated psychological condition lumped in the same category on account of a superficial similarity in symptoms.

doingtheiroming 3y ago
Auto Immune Disorder (IBD in my case) sufferer here. I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body (GI in my case) where the immune system is causing most damage at a given moment who will ask questions about other symptoms that we now have a good idea are likely the result of the same inflammation (depression, joint pain, peripheral neuropathy, CFS, etc. etc. etc.) but at no point, is there a department of immunology that takes over or even contributes. I've worked my way through azathioprine (poisons your bone marrow to reduce white blood cell count - great for getting skin cancer) to vedolizumab which targets a single gut immune system signaling molecule. I'm lucky in that both have induced full remission which means all the inflammation related symptoms go away, not just the colitis. But I know many people who aren't that lucky and who get some symptoms controlled while others continue unabated. And then there are folk like you who seem to get nothing. The immune system in complex in the proper sense but we still treat the problems it causes reductively. Worse, most of the research that is done treats it reductively also. If COVID had a silver lining it was that it seemed immune system research got a couple of decades of research done in two years. But when I'm talking to my GI, I really feel that nothing has changed and that at some point, I'm going to flare again, get deeply depressed, be unable to move properly or exercise, lose feeling in my toes and after the steroids have ruined me a bit more, I'll be stuck on a new IBD drug and will hope for the best. We need these diseases to be treated systemically, as a class and for the immune system to have it's own specialists in research and treatment. They would be able to act as sherpas for sufferers but more importantly, would be a point of nucleation for new ideas about the immune system since they would be exposed to the gamut of problems sufferers face. It makes me angry, which is probably a flare-risk factor...

mercer 3y ago

well I do a lot of pacing, so at least I have that covered...

Madmallard 3y ago

Sounds like a really bad explanation that has 0 root in physiology. I have CFS and I had a cardiac stress test and my VO2 max is 20, despite only being 33 years old. It's literally half of what it should be for my age. That's worse than having heart failure. I have a severely impaired lactate threshold and severe exercise intolerance. The other people I know are similar. Autonomic dysfunction has roots in chronic mitochondrial dysfunction. My urine malondialdehyde levels are off the charts high. All this excessive oxidative stress and cellular respiration starts shutting down everywhere. I have been walking miles per day for a long time now trying to alleviate it and I still cannot run or do any intense exercise. Toxic insults, genetic vulnerabilities, antibiotics that induce mitochondrial dysfunction, and many other things cause these insults. I've talked with others that had their mitochondria tested via mass spectroscopy and there's loss of ATP compared to healthy controls and blocked active sites. Our toxic environment and lifestyles and drugs are ruining everyone's physiology. It's really depressing seeing doctors just not remember anything from their schooling and come up with really ignorant and patient-harmful perspectives on chronic disease processes ruining society in 2023. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4136529/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4136529/ https://pubmed.ncbi.nlm.nih.gov/23825301/ https://pubmed.ncbi.nlm.nih.gov/23825301/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6182158/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6182158/ https://www.sciencedaily.com/releases/2018/10/181001101943.htm https://www.sciencedaily.com/releases/2018/10/181001101943.h...

lindsaywaterman 3y ago
I'm really sorry you're suffering so much with this. As a 33 year old a ME/CFS diagnosis represents such a loss. I should know as I got CFS as 32! Now after recovering myself and working with 100s of pts, ... well I have my opinions. I def think there is mitochondrial and other physiology involved so in that I agree with you. I'd just say - try some pacing, see if you can get into the mindfulness. Maybe it will help!
- Madmallard 3y ago
  the skiddishness develops as a protective mechanism for the organism and is a symptom of the fundamental problem but not that problem itself

beaker52 3y ago

Anecdotally, my ex-wife suffered from CFS. She’d get bouts whenever she needed to do something she didn’t particularly want to do, to the point of predictability. She’d lost all ability to challenge her response to these kinds of situations.

interpenetrate 3y ago

This is my first time hearing "central sensitization syndrome." I know back ~5 years ago John Sarno's "tension myoneural syndrome" was still the dominant diagnosis in the self-help circles of mindbody illness, and it at least had the mechanism of repression to enrich its explanatory power. Still a far cry from the richness of psychoanalytic theory, but at least it was a move in the right direction after such an epic retreat from Freud. Central sensitization syndrome seems like such a concession to the medical model, which I guess puts it in alignment with the poverty of therapy ("mindfulness," etc.).

lindsaywaterman 3y ago
Yes, there's a lot of terminology out there to describe this constellation of symptoms/the process of CSS. The sarno stuff is getting a lot more attention these days as "psychopysiologic" therapy. Things are moving in a good direction and I'm hopefull that repression will be characterized neurophysiologically. See the references I posted to another comment.
- interpenetrate 3y ago
  Thanks for the articles, I'll have to catch up.

experimenting 3y ago

Chronic fatigue syndrome resulting from SARS-2 infection should be contextualized and understood from chronic fatigue syndrome resulting from original SARS from 2003. Presentation of which should be different from what you see in practice. - An exploratory study of nurses suffering from severe acute respiratory syndrome (SARS) - Long-term Psychological and Occupational Effects of Providing Hospital Healthcare during SARS Outbreak - Mental Morbidities and Chronic Fatigue in Severe Acute Respiratory Syndrome Survivors: Long-term Follow-up - Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study

aestetix 3y ago

I have two questions for you. First, do you have any opinion on prescripting valciclovir? Apparently some ME/CFS presentations are linked to herpes, and taking valtrex significantly mitigates symptoms. However, in order for this to be effective, it needs to be taken in doses similar to truvada or viramune, not as a short term fix for a herpes outbreak. Second, any opinion on Bhupesh Prusty's work, specifically regarding fibernectin and a potential biomarker being in bone marrow?

lindsaywaterman 3y ago
Thanks for these - don't have an opinion on either but will look into. Broadly, I think immune dysfunction is a feature of most cfs so there is often a positive EBV test, or HSV test. I suspect this is more "downstream" than causative of CFS. However, it may be that there is a biomarker in the mitochondrial function, bone marrow etc...I hope one is found!
- smearth 3y ago
  Why is the medical profession obsessed with biomarkers but not the next optimal step in patient treatment plans? Root cause analysis of dysfunction in complex dynamic systems is a waste of energy. Someone has the biomarker but they are a heroin addict which confers them a protective mechanism. What then? If you have 5 heroin addicts with similar symptoms you can just experiment with likely beneficial next treatment steps. Then let machine learning track the treatment response patterns and reccomend next treatment steps. Grouping health histories and symptons then recording responses to treatment plans then using machine learning to recommend next treatment steps is - surely better than searching for biomarkers so Drs can stick their hands up faster. Rockefeller gave us the Johns Hopkin Medical System , Can’t Bill Gates give us the complex chronic illness extension? Why don’t Doctors have a 300 question questionaire for patients covering all aspects of the patients health? You could then group the patients into health dopplegangers. No need for biomarkers. Combine the good part of alternative medicine ( carefully understanding the patients symptons) with machine learning. There’s 8 billion humans. There are alot of sympton dopplegangers out there to experiment and record the effects of next treatment steps on. Medical professionals are obsessed with being trivial pursuit champions and seem to lose sight of the fact that they’re often invited to play invisible bridge. It is fantastic that they are great at trivial pursuit (The Johns Hopkin system is a modern marvel) and they do untold good above and beyond the measure of most citizens and far far more than myself but doing good doesn’t cure complex chronic illnesses. (I admire Doctors). But it’s frustrating that we have to pretend that because Dr’s are great in one area (acute medicine) that the greatness translates to other areas. The halo effect is really strong. Look up the research for recovery rates from cfs. Abysmal.

andreareina 3y ago

This sounds like "it's all in their head" with extra steps and disregards findings of actual physiological differences in people with ME/CFS.

whimsicalism 3y ago
The mind-body dualism is not real and mind & body symptoms can be co-productive. That said, the evidence of 'actual physiological differences in people with ME/CFS' is not very strong at all (relative to the amount of scrutiny this problem has received) and research on other hypotheses has been halted numerous times due to death threats.
- wtetzner 3y ago
  Why were there death threats?
  - whimsicalism 3y ago
    Here is an article for context: https://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis https://www.theguardian.com/society/2011/aug/21/chronic-fati... Anything with somatic involvement is heavily stigmatized in anglo culture, so people will respond with violence.
    - incangold 3y ago
      Alternatively, sick patients desperate to get better have been written off or abused by their doctors for decades and that makes people angry. Here’s a story of a girl who was made permanently worse after her condition was treated as psychosomatic and she was encouraged to gradually increase her activity. On autopsy her spinal nerves were lit up with inflammation: https://www.bbc.co.uk/news/health-44969741 https://www.bbc.co.uk/news/health-44969741 Here’s another of a Danish girl who was taken from her parents and returned as a husk of her former self after legal challenge: https://me-pedia.org/wiki/Karina_Hansen https://me-pedia.org/wiki/Karina_Hansen There are thousands of stories of similar neglect. I don’t know a single ME/CFS patients who would care if their condition was somatic if treating it as such was effective. People just want to get better. Patients undergo treatment on the basis that it’s a somatic illness, it doesn’t work or makes them worse, and then they discover how few people there are looking for alternative approaches, and how flawed the studies supporting their treatment were. I am curious what your background is. Are you an ME patient, or a doctor, or…?

ajb 3y ago

It seems dodgy to talk about "chronic avoidance/dissociation" being the "underlying issue". The word "underlying" is usually used to refer to the cause, when it's clearly a response. I think this will result justified distrust of your advice, despite your experience.

lindsaywaterman 3y ago
You’re totally right that worse somatic symptoms create a viscipus cycle of avoidance and worsening symptoms. I do think that a chronic pattern of avoidance is what causes somatizing in the first place tho. Peace.
- smearth 3y ago
  You might think that but it doesn’t heal anyone. Recovery rates for cfs are abysmal, I’m surprised you aren’t ashamed of your profession’s performance in this area. You seem comfortable placing responsibility for the illness on your patients “avoidance”. Yet it is initiated by a virus and everyone has different levels of mitochondrial density, resilience and health and different inflammatory cascades. “Avoidance” of what? The medical profession has a chronic pattern of avoiding the fact they can’t heal anything involving more than about 4 variables. Explain how vitamin d, k, and serum ferritin interact in bone marrow please Doc or cholesterol’s role in cellular permeability as an immune defense or a vitamin D deficiencies effect on the permeability of cartilage and subsequent concentrations of potassium in the inner ears please doc, or latent hibernation responses, or the effect of obstetrics on the mitochondrial health of a population, or unknown pathogens or a combination of all of those things. Because any combination of a breakdown in those things could be contributors to the fatigue you’ve attributed to avoidance yet your profession has avoided researching all of them. Your profession avoids the fact that medical research is mainly focused on fast financial returns. I do think there is a chronic pattern of some doctors avoiding shame at their self-perceived inadequacies caused by their medical school trivial pursuit trauma conditioning that is useless for complex problem solving and then projecting that shame onto their patients in order to minimise the cognitive dissonance surrounding their ineffective treatment plans for chronic conditions . I cured my chronic fatigue - no thanks to your professions expertise - the avoidance was a necessary part of the cure while my body healed. Some times people have bad luck. It is unavoidable.

smearth 3y ago

I think conditioning medical students to race other medical students to label health problems quickly- efectively turning medical school into a sleep deprived game of trivial pursuit for competitive, high IQ, mentally resilient, energetic people - only prepares those people to heal simple medical conditions involving 1 or 2 body systems. This functionality is becoming largely replaceble by llm’s who are also competent at that level of system complexity. The leading medical solution for CFS is pacing and a web link. Chatgpt could do that. Once you are past a certain level of system complexity - root cause analysis becomes useless as changing one part of the system affects the other parts unpredictably. I am diagnosed with CFS. Didn’t seek the diagnosis, denied it initially which is not the norm.I now pretend I don’t have it as that is the best way to cure it. But beating it was hell as you literally get given an A4 sheet of paper explaining the condition when diagnosed. And your brain is exhausted after reading the sheet. But that is all you have. So you are supposed to take that A4 sheet of paper and troubleshoot your way out of the condition when the instructions on the A4 sheet don’t even work. The best way I can describe it is you find yourself in a shame riddled labyrinth, your brain doesn’t work, you are tired and in pain and you are told to accept your new normal. There are ways out of the labyrinth. A doctor doesn’t have the map though. The best way to describe chronic fatigue is extreme sensitivity to over exertion. You walk to the mailbox and 24 to 72 hours later your body reacts like you’ve run the boston marathon and the mind reacts like you’ve just pulled an all nighter to manually sort 7 tabs of 3 columns and 10,000 rows of a spreadsheet on a 17 inch monitor under time pressure while hung over, 3 days into the flu in order to resurrect hitler. CFS exhaustion and brain fog can get triggered by any stress response. And it kicks in 24 to 72 hours after stress exposure. The Doc says pacing and mindfullness will save you. Except it won’t. The body can get stuck in unhealthy stable states. I always encourage people to look at the roche biochemistry chart (with about the same success rate as treatment plans for CFS) to understand that the body can be hypersensitive to overexertion (mental or physical) for an infinite number of combinations. Fortunately there are a quite a number of things that you can do to escape the labyrinth. - Explain to anyone that cares that there is a medical field dedicated to assessing levels of debilitation and that cfs is as debilitating as cancer. (Very few people care) - get stable accommodation. - Get a comfortable supportive bed to convalesce in. - Eat a diet that minimises inflammation - deeply boiled veges, rice, potatoe or sweet potatoe, grass/algal fed free range protein, olive oil. Maintain steady blood sugar. - Body strength train. - Sort out a vitamin and supplement regime with a genetic analysis. - Take an anger management course to understand the anger of others. -Understand pain - the curable app on chronic pain management is highly beneficial. - Learn to forgive. Resentment ruins health. - Get a career you are capable of. Aim low. - Get regular physical activity. - Perform improvisational comedy to condition the mind to cope with an onslaught of public social pressure. - Pretend you don’t have chronic fatigue syndrome. What doctors get wrong ( it is hard for them to comprehend the condition as most aren’t susceptible as they were tough enough to get through medical school) is that chronic avoidance is the right strategy until your body can cope with stress without fatiguing. It isn’t all in your head. I’d say ability to sideplank and neck strength are probably two of the most important recovery metrics. Drs don’t understand the psycho-somatic balance of the illness. There is a psychological component but it is a minor component and is driven by physical constraints. The sad thing is that cfs is quite treatable but the medical profession says pacing and mindfulness is all one needs to cure something that is as debilitating as cancer. You don’t need to be mindful to beat chronic fatigue syndrome. I think sarcasm is more beneficial when coping with a bleak future. And I really like and admire Doctors - it’s not their fault that their system is terrible at creating healing treatment plans for complex chronic health conditions.

pjc50 3y ago

Hmm. The argument is that it lies within the nervous system (physically), but then you mention avoidance/dissociation (psychological)? This reminds me of a lot of physical/psychological/"it's all in your head" discussions with various sorts of CFS sufferer, most of whom have serious problems getting anyone to take seriously the possibility that it might not be all in your head. https://www.cfsselfhelp.org/pacing-tutorial https://www.cfsselfhelp.org/pacing-tutorial reminds me of what the livejournallers called "spoon theory". In both cases the observation is that exceeding one's limits can cause a "crash" of much worsened symptoms. At least it recognizes PEM and doesn't recommend blindly applying graduated exercise therapy. Do you have any good research on ME/CFS biomarkers?

Izkata 3y ago
> The argument is that it lies within the nervous system (physically), but then you mention avoidance/dissociation (psychological)? Psychosomatic exists between these two, which I think is what they're describing.
- pjc50 3y ago
  .. but is a really poorly understood (set of) mechanisms?
lindsaywaterman 3y ago
Yes everyone is stuck in mind/body duality. From a neuroscience perspective all psychology is instantiated through the nervous and endocrine systems. So it’s reasonable to me that a habit of mind such as chronic dissociation - could have an outcome in physiology such as cfs. Like you I am patiently awaiting biomarkers or other reliable indicators.
- pixl97 3y ago
  The idea of mind body duality is crazy to me, yet I see so many people kind of stuck on it. If you take a modern computer controlled car and start changing other parts of it, such as the tires, fuel or even something like a spark plug starting to go bad, the computer in the car has to adjust itself to maintain its performance envelope. Change the system enough and the computer will no longer be able to compensate and likely throw some error codes in your direction. And the car, compared to the human body, is a much simpler system with much more discrete and well defined parts. The mind/body integration is far more complex. The control systems to maintain homeostasis without ones organs demands killing off the rest of the body are truly something to behold.

_yb2s 3y ago

How does this theory line up with the my experience, which seems to be similar to a lot of people with CFS: I had high energy levels until I suddenly got sick, and had a mild fever for about a day. After that I had the sort of fatigue one feels when having the flu, except it lasted for about 8 months, and then gradually lifted. After that my energy levels totally recovered and stayed normal for over a decade. All tests, including psychiatric evaluation were normal so it was considered CFS.

lindsaywaterman 3y ago
Yes that’s pretty typical. Some people go in stepwise, some go in all at once. I think you got lucky with your complete recovery, although that is common after about a year for long Covid in particular.
martindbp 3y ago
I've had constant brain fog / fatigue for the last 6 months after a brief stomach flu. Got a tip to try the sauna for 3 days a week, which apparently doubles human growth hormone production. After two weeks of this I've finally had 5 days in a row where I don't feel tired. I still need to sleep more than usual, but before I could sleep 10 hours and still feel very tired, now I feel great after 9 hours. The person who told me this had a patient who lost her sense of smell after Covid, and it wouldn't come back. It came back after a single session in the sauna.
- agos 3y ago
  as far as low risk/low cost treatment options to try go, sauna sounds pretty great
  - martindbp 3y ago
    Yes, gyms tend to have them here, but we're a very sauna dense country

Llamamoe 3y ago

What you're looking at is people with really bad gut microbiomes or other ongoing infections, not "CSS" - the behavior you're describing is called sickness behavior[1] and is produced by ongoing infections and blood infiltration by bacterial toxins like LPS (which coincidentally is used to induce mouse models of depression) Rhetoric like yours is why most chronically ill people suffer for years and decades before getting any kind of diagnosis or treatment at all. [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8960409/?report=classic https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8960409/?report...

lindsaywaterman 3y ago
Well - I myself had cfs and found that pacing and mindfulness really helped! I think these approaches have been empowering for both myself and hundreds of my patients. And there is some clinical research there to back my opinions up. however I am always open to and hopeful that other approaches like those that go via the microbiome, will be helpful.
- Llamamoe 3y ago
  I believe you, but at the same time you have to take the correction for the fact that humans are storytelling creatures- we correlate our life experiences with our internal experience and spin them into stories by instinct- I've never met anyone who wasn't convinced their illness was related to life events and mindset for a long while before stumbling onto a diagnosis. So I always wonder, are we seeing successful treatment of somatic complaints, or are we seeing regression to the mean spun into a story, or perhaps both?
  - lindsaywaterman 3y ago
    Reasonable question! I ask myself the same. Always good to open to other points of view!

y-c-o-m-b 3y ago

You appear to be speaking definitively as if you're fully devoted to this conclusion, even though the evidence is shaky at best. This is precisely why there's so much vitriol towards physicians when dealing with neurological symptoms. It's also why people flock to sketchy naturopaths and "alternative medicine" that peddle hundreds of dollars of snake oil supplements. We should be exhausting and excluding all physiological causes before jumping to the psychiatric model. If you truly believe this, then your duty as a provider is to refer the patient to someone who is qualified to address the mental health of patients - a psychologist. Refrain from labeling your patients with this condition, as that will only burn the patient-provider relationship more and will lead to further distrust in the medical community. Regardless of the origins of CFS, it's important that patients have professional mental health resources that can help them navigate the stress and anxiety around their disability. Here is some research which discusses how providers may be mislead into raising concerns over psychiatric/somatic disorders due to the lack of evidence on conventional diagnostics. In this research paper, patients experienced MS symptoms and appear to have normal conventional MRIs, but further analysis with advanced MRI techniques reveals inflammation in the CNS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5880628 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5880628 . This highlights how important it is to understand we have not exhausted our diagnostic potential and should be cautious about making claims without solid evidence. EDIT - also since you're using your credentials as a physician here, do you mind sharing what area of practice you're in?

npunt 3y ago

sigh no, this is not the generally recognized understanding of MECFS, just one hypothesis, and one that better explains fibro/pain [1]. It's also a conclusion not too distant from the 'its in your head' concept that has held back research in this field for decades. A more recent hypothesis with some experimental evidence is related to ATP production issues, specifically the itaconate shunt. See this overview from MECFS expert Ron Davis filmed last week [2] Disruptions to a healthy gut microbiome is another hypothesis that has a lot of interesting results. I'm involved in a study on this [3] Saying 'I'm a physician, its best understood as...' suggests a level of certainty to a disease whose underlying causes are unclear and the subject of active research. It would be an extreme disservice to MECFS patients to just say 'do pacing and mindfulness' and not explore other very promising treatments. That said, pacing is essential and CSS is worthy of additional study. [1]: https://me-pedia.org/wiki/Central_sensitization https://me-pedia.org/wiki/Central_sensitization [2]: https://www.youtube.com/watch?v=7inKF32vtl8 https://www.youtube.com/watch?v=7inKF32vtl8 [3]: https://remissionbiome.org https://remissionbiome.org