17 ms·

Stanford scientist searches for answer to his son’s Chronic Fatigue Syndrome

230 points by mcone 9y ago

djsumdog 9y ago
There was another Chronic Fatigue Syndrome post a few days ago that has some interesting comment threads: https://news.ycombinator.com/item?id=14896255 https://news.ycombinator.com/item?id=14896255 (Not a dupe, just a different article)
the_absurdist 9y ago
This is what happens when parents indulge far-fetched academic haziness because they don't have the strength to confront the obvious: their kid is depressed and lacking the social skills to cope with life. Give that 33 year old a beautiful woman, money, and an executive level role at a tech firm and watch him suddenly only need 6 hours a day of sleep. Mystery solved.
- _tulpa 9y ago
  That's... Not how any of that works
- Method-X 9y ago
  He's being fed intravenously and can't speak. Read the article.
- wellboy 9y ago
  CFS is not an imbalance of neuro-transmitters in the brain, which it is the case for all psychological illnesses. As for the latest research, it is a dysfunction of all mitochondria in the body. More specifically, when ATP is reduced to ADP to produce energy, N+ and O+ radicals are created. Usually, those are eaten up by killer cells. However, in CFS patients, this mechanism is damaged, so that way too much N+ and O+ are created or, they are not eaten up fast enough after only very little exertion. That is why, CFS patients are bedridden for weeks and months after only running for the bus for 2 mins, because their body becomes overloaded with free radicals. Those damage your cell membranes and create all sorts of pain, fatigue, brain fog, and many more symptoms. I've been suffering from CFS for almost 3 years now. I went from building my own startup to massive pain and other symptoms within 24h. Over the years, I managed to reduce the symptoms by staying in bed completely for 1 year and paying a lot of attention to not exert myself for the remainder. I can do small things now without having "crashes" and am taking a lot of anti-oxidants after having found a doctor (Prof. Huber) in Germany who has specialized in CFS and developed a therapy. He said there are only 10 more doctors in Germany who know about CFS. Before him, I went to see 30 other doctors who didn't give a damn about finding out what's wrong with me. They also will not do more than the usual testing, because they don't want to exceed their per patient budget. You need to find a private insurance doctor. So for 2 years all doctors have told me it's all psychological. I went to see psychiatrists who prescribed me heavy anti-depressant. They told me I have heavy depression. When I asked them why they would say that, because I don't fulfill the depression criteria they became angry. In order to be diagnosed with depression, you need a minimum of symptoms including suicidal thoughts, sleep disturbances, change in appetite etc. I did not have any of those, I just had massive pins and needle pains all over body, blurred vision and muscle twitching. I told that to the psychiatrists and became angry, because I questioned their authority. They are the expert and not me. Then they tried to gaslight me by saying that I feel depressed multiple times even though I told them that I don't. Then they told me I am a narcissist, manic, anti-social etc. and that is why I have these symptoms. After 2 years I finally found a doctor who was not like this and who did more tests. He found elevated S100B protein (the CRP of the nervous system), MDA-LDL (free radicals) and low killer cells. So, this is what you can expect when having CFS, doctors become angry, they try to actually gaslight you. Doctors vigorously say that CFS doesn't exist even though it is described specifically in the ICD. Apart from that l, your parents will desperately try to convince you that you're mentally ill and that it's all in your head, because that's what the doctors say and become desperately angry to try to convince you and maybe also cut contact with you, because they can't see their child withering away in bed, while he/she refuses to "listen to the doctors". There are also other examples of recovery, so it is possible. However, most patients do not recover ever, because they have kids or need to work a job. If someone with CFS has kids or a they need to work, it's almost a death sentence, because you cannot do anything for years if you want to recover and you should not have more than 5 or so crashes in total, because the recovery time increases by several months for every crash, at least at the current state of therapy. So, it's hard, but I've now had a 2 out of 5 main symptoms disappear after 2 years of avoidance of exertion and hope the other ones clear in the next few months.
- DiabloD3 9y ago
  As someone who suspects I may at least somewhat suffer from Chronic Fatigue Syndrome, you're... not even all that wrong. I know that science is now saying that "decision fatigue" doesn't exist, but I think they measured the wrong thing. It's straight up "give a fuck fatigue". It isn't work that does it to me; I can go to work, enjoy work, get enough shit done that the money keeps coming in and my customers are happy with the service I provide. You know what drains me? The boringness of being an adult and having nothing to actually really look forwards to. Sometimes I'll sleep 10 hours straight and get up tired. Sometimes I have to do the mental equivalent of grinding my transmission gears because I'm not paying attention to the clutch, so the flow state never, well, flows. The mindless activities are hard to concentrate on, but they need to be done, so I exert far more give-a-fuck-ium than I should have to. And the thing is, I've always been this way. I didn't become this way, I didn't slowly turn into this, I didn't become burned out. It's part of me. I mean, I'm most certainly an introvert, so are a lot of the HN community; being with people in social situations are extremely taxing at times... it, too, burns a lot of my precious give-a-fuck-ium. You know what recharges me? Having a good time with someone I know, where we both enjoy each other's company, where its a nice relaxed thing where neither of us have anything to prove to the other. Problem is, women are people too. I mean, we're a male-centric community here, we work in male-centric environments, sometimes people like us forget... women have all the same problems we do. They have just as many problems connecting as we do., and we keep circling around in these holding patterns and just grinding their gears because they never find that one person to connect with just as we can't. You can't just give someone that beautiful woman. They need the right beautiful woman. I think the problem that keeps happening for a lot of us is we keep finding the wrong women... not bad women, just wrong for us. It really throws a wrench in things because humans seem to need those close relationships with others to function properly, and we're not making them... and it's sapping our ability to regenerate our give-a-fuck-ium.
  - wellboy 9y ago
    That doesn't sound like CFS though. If you have CFS, working for a few hours or jogging for a few mins, leaves you in pain and fatigue for weeks. Chronic Fatigue Syndrome is also a very bad name, because many patients don't have fatigue, but they have very high exercise intolerance (jogging for a few mins leaves you bedridden). That's why the current discussion is to rename it to S.E.I.D (Systemic Exercise Intolerance Disease). Yours sounds like a mild depression, which can be easily treated through therapy or anti-depressants if needed. But I would see a doctor before of course.
- static_noise 9y ago
  The root cause of depression is chemical not psychological. It's a natural process and everybody gets depressed sometimes. If you get depressed, you can fix it by behaving like a normal person following normal person schedules and doing normal person things like sports and eating good food. Well... unless you can't because you're really sick and not just depressed. Those with CFS have tried following the recipy of getting cured and failed. Time and time again. Sometimes they succeed for no good reason but mostly after some time of being normal it all falls apart again.
  - vivekd 9y ago
    See, I don't know how meaningful the chemical not psychological distinction is. I mean doesn't every thing we feel have chemical components?
    - static_noise 9y ago
      What chemical corresponds to the mental picture of a cat? Sure, they are heavily interrelated. They are vastly different models of the same thing. While we can understand some processes simply by chemistry, we don't get too far with that when trying to understand social behavior. On the other hand psychology can model processes and behaviors on another level. Sometimes they overlap well but far too seldom. They will probably not converge well in our lifetime because we are really slow in understanding of complex interrelated systems and cannot make all the experiments we need to quickly advance scientifically.
  - jamestnz 9y ago
    >The root cause of depression is chemical I wonder if you were speaking generally here, or if you were referring specifically to the Chemical Imbalance theory of depression/anxiety. Often espoused by the marketing departments of Big Pharma, and by now firmly lodged in the public consciousness, the idea that abnormal monoamine levels (e.g. serotonin, noradrenaline) in the brain causes depression, is (to say the least) highly controversial. Some might even call it "debunked". Or, more charitably perhaps, just a highly persistent meme that's never really had much to do with science from the get-go. BTW, I say this as someone who saw successful results using SSRIs (Citalopram) as a treatment for depression some years ago. Given that the relationship between serotonin and depression seems subtle, indirect, and poorly understood at best, I don't pretend to be able to explain why SSRI treatment "worked" for me! Placebo? Coincidence? Genuine effect which empirically exists but we do not yet understand the mechanism (a bit like lithium)?
- pjc50 9y ago
  This is just another version of the ignorant "depression == sadness" meme. Depression and CFS aren't exactly the same thing either.
- code_duck 9y ago
  I had an undiagnosed condition that caused symptoms similar to chronic fatigue for years, and had even been linked to depression and bipolar - celiac. Your advice would not have been helpful at all. Now that I'm eating gluten free i am fine.
- sctb 9y ago
  Whether you intended to troll with this comment or not, it's so far disconnected from the actual topic of conversation and dismissive of the people involved that the effect is the same. Please post civilly and substantively on Hacker News or not at all.
  - the_absurdist 9y ago
    Whether you like it or not...Hacker News exceeds the boundaries of your politically correct Silicon Valley echo chamber. At least be honest about your criticism and say something like: "I'm uncomfortable by how out of step your comment is with my obligation to displace personal responsibility away from anyone who has a claim to victimhood."
- deleted 9y ago
  [deleted]
hamsterjam 9y ago
I thought I had CFS for years. Until I started exercising and eating right and stopped abusing coffee.
c3534l 9y ago
CFS is a controversial diagnosis.
- static_noise 9y ago
  I fear that it's becoming a catchall-diagnosis for illnesses the doctors don't understand and can't cure. The current catchall is "it's psychosomatic" or "get over it already you lazy *". Most doctors can only handle diseases that can be cured by pills or cutting up the patient. With CFS we have something that seems to cleverly evade all attempts to cure it or even define what it actually is and how to properly diagnose it. I surely do hope that this changes soon!
  - harryjo 9y ago
    The lack of an objective test is more problematic tan the lack of a cure.
    - lez 9y ago
      There are tests available, see: http://drmyhill.co.uk/wiki/Mitochondrial_Function_Profile http://drmyhill.co.uk/wiki/Mitochondrial_Function_Profile (and more on that page)
      - manmal 9y ago
        Dr Myhill is quite controversial, and many who followed her advice were not helped by it. Always take advice with a grain of salt if the advice giver peddles her own line of supplements.
    - manmal 9y ago
      There was very recently an article about a maybe-upcoming test: https://news.ycombinator.com/item?id=14896255 https://news.ycombinator.com/item?id=14896255
- ekianjo 9y ago
  kind of similar to fibromyalgia, also very difficult to diagnose with accuracy.
chmike 9y ago
I'm on safary (iPad) and can't read the article. Page is blank.
- Angostura 9y ago
  Tap the Reader icon in the address bar and you’ll be able to read it fine.
  - chmike 9y ago
    Thank you. Didn't thought of that. Can't delete my question anymore. I apologize for the noise.
    - Angostura 9y ago
      Wasn't noise. You called out poor design.
- aw3c2 9y ago
  Maybe try a different browser, works fine with Firefox for me.
rmetzler 9y ago
Astonishing, how none of these articles and comments seem to mention medical marijuana. The /r/trees subreddit might be filter bubble, but the fact that you're able to find individual stories that point at MMJ helping at least some people with Chronic Fatigue Syndrome, seems interesting. Also notice that the patient from this article went to Jamaica and India, two destinations famous for their cannabis. Maybe the patient's endocannabinoid system is off.
- tudorw 9y ago
  indeed, https://www.ncbi.nlm.nih.gov/pubmed/18698000 https://www.ncbi.nlm.nih.gov/pubmed/18698000 The endocannabinoid anandamide is a substrate for the human polymorphic cytochrome P450 2D6. (The discovery of anandamide came from research into CB1 and CB2, as it was inevitable that a naturally occurring (endogenous) chemical would be found to affect these receptors.) Gene's also seem to play a role https://mobile.nytimes.com/2015/03/08/opinion/sunday/the-feel-good-gene.html https://mobile.nytimes.com/2015/03/08/opinion/sunday/the-fee...
- DanBC 9y ago
  > but the fact that you're able to find individual stories that point at MMJ helping at least some people with Chronic Fatigue Syndrome, seems interesting. No, it's not in any way interesting. You'll always find people saying "this helped me", where "this" is cannabis, homeopathy, crystals, prayer, some type of medication, some type of surgery.
  - tudorw 9y ago
    Yes, but the OP reply has a point, anecdotal evidence is often a factor in finding off label uses for pharmaceuticals, so it's worth recording and investigating anecdotal evidence, it's certainly not the basis for ongoing advice, but it is a starting point for possibly worthy research. "When a drug is prescribed off-label, however, the risks may increase. That’s because the safety and efficacy of off-label uses has not been evaluated by the FDA. Instead, off-label use is often based on smaller sample sizes and anecdotal evidence, such as how well a particular doctor sees that an off-label use has worked for her patients in the past. While information like this can seem compelling, the drug hasn’t been put to the same rigorous scientific testing and analysis as it has for its on-label uses. Unexpected side effects can pop up, some of them serious." http://www.rotlaw.com/legal-library/what-is-off-label-use/ http://www.rotlaw.com/legal-library/what-is-off-label-use/
wellboy 9y ago
Since some comments made the comparison to psychological factors, CFS is not an imbalance of neuro-transmitters in the brain, which it is the case for all psychological illnesses. As for the latest research, it is a dysfunction of all mitochondria in the body. More specifically, when ATP is reduced to ADP to produce energy, N+ and O+ radicals are created. Usually, those are eaten up by killer cells. However, in CFS patients, this mechanism is damaged, so that way too much N+ and O+ are created or, they are not eaten up fast enough after only very little exertion. That is why, CFS patients are bedridden for weeks and months after only running for the bus for 2 mins, because their body becomes overloaded with free radicals. Those damage your cell membranes and create all sorts of pain, fatigue, brain fog, and many more symptoms. I've been suffering from CFS for almost 3 years now. I went from building my own startup and loving life to massive pain and other symptoms within 24h. Over the years, I managed to reduce the symptoms by staying in bed completely for 1 year and paying a lot of attention to not exert myself for the remainder. I can do small things now without having "crashes" and am taking a lot of anti-oxidants after having found a doctor (Prof. Huber) in Germany who has specialized in CFS and developed a therapy. He said there are only 10 more doctors in Germany who know about CFS. Before him, I went to see 30 other doctors who didn't give a damn about finding out what's wrong with me. Doctors also will not do more than the usual testing, because they don't want to exceed their per patient budget. You need to find a private insurance doctor. So for 2 years all doctors have told me it's all psychological. I went to see psychiatrists who prescribed me heavy anti-depressant. They told me I have heavy depression. When I asked them why they would say that, because I don't fulfill the depression criteria they became angry. In order to be diagnosed with depression, you need a minimum of symptoms including suicidal thoughts, sleep disturbances, change in appetite etc. I did not have any of those, I just had massive pins and needle pains all over body, blurred vision and muscle twitching. I told that to the psychiatrists and became angry, because I questioned their authority. They are the expert and not me. Then they tried to gaslight me by saying that I feel depressed multiple times even though I told them that I don't. Then they told me I am a narcissist, manic, anti-social etc. and that is why I have these symptoms. After 2 years I finally found a doctor who was not like this and who did more tests. He found elevated S100B protein (the CRP of the nervous system), MDA-LDL (free radicals) and low killer cells. So, this is what you can expect when having CFS, doctors become angry, they try to actually gaslight you. Doctors vigorously say that CFS doesn't exist even though it is described specifically in the ICD. Apart from that, your parents will desperately try to convince you that you're mentally ill and that it's all in your head, because that's what the doctors say and become desperately angry to try to convince you and maybe also cut contact with you, because they can't see their child withering away in bed, while he/she refuses to "listen to the doctors". There are examples of recovery, so it is possible. However, most patients do not recover ever, because they have kids or need to work a job. If someone with CFS has kids or a they need to work, it's almost a death sentence, because you cannot do anything for years if you want to recover and you should not have more than 5 or so crashes in total, because the recovery time increases by several months for every crash, at least at the current state of therapy. So, it's hard, but I've now had a 2 out of 5 main symptoms disappear after 2 years of avoidance of exertion and hope the other ones clear in the next few months.
afpx 9y ago
After reading all of the Sapolsky books, I'm fascinated and saddened by how much impact long-term psychological stress can have on Human health. It seriously wrecks havoc and can subtlety restructure the brain in ways that can be difficult to reverse. But, yet, Humans also seem to relish in displaying how much stress they can withstand while acting like it doesn't effect them at all. It's a sick badge of honor. I've seen people tolerate and even feign enjoyment of high-stress lifestyles for decades before finally succumbing to it. Nowadays, when I even feel the slightest bit of stress response continuing for longer than a day, I try to completely remove myself from the environment that could be causing it.
- jfoutz 9y ago
  Culture relishes how much stress one can handle. Not humans. It's a learned behavior.
  - chippy 9y ago
    Depends on definitions. One could see that a human can relish dealing with the challenge of a freely entered stressful situation. For example, giving birth.
  - cpncrunch 9y ago
    >Culture relishes how much stress one can handle. Not humans. It's a learned behavior. It might define how much stress people try to handle. But it certainly doesn't define the limit of what you can handle (which is completely out of your control).
- ngold 9y ago
  As a bit of a person that enjoys quit times. Jump into a crowd every now and again. Just to keep the blood running.
- chrismealy 9y ago
  Sapolsky writes about a certain amount of stress being good for you. IIRC he cites a study about people in retirement homes do better if they are made to do chores.
Madmallard 9y ago
It's mitochondrial dysfunction Fairly obvious if you look enough at the research mitochondrial disease patients rarely get diagnosed as adults and they often suffer a lot of complications unnecessarily as a result Our medical system is awful at dealing with it - chronic stress and anxiety are certainly related to metabolic disturbances as well according to research so that makes it an easy target for doctors to "explain away". also antibiotics cause mitochondrial dysfunction (particularly bacteriocidal antibiotics) chronic stress and sleep deprivation "raise your susceptibilty" to chronic fatigue and fibromyalgia - yeah becuase they lead to excess oxidative stress CFS patients are probably surgery risks as well then since propofol and the like inhibit mitochondria
- EugeneAZ 9y ago
  >Our medical system... Yeah, an anecdote. The USA spend through the federal (only!) budget roughly $4 000 B every year, yet they don't fund properly even people like Dr. Todd Rider. The man asked just for $2 M for his DRACO research (100% effective proved cure against viruses like flu, herpes, etc) - it's like to ask for two coins from a stack 4 km long. Two coins and four kilometers stack of those. Every effing year! And do you know how they treated Dr. Tullio Simoncini? This society is fawked, hahahah.
  - dpark 9y ago
    > The man asked just for $2 M for his DRACO research (100% effective proved cure against viruses like flu, herpes, etc) Why would you still be researching if it's 100% proven? Maybe the claim that it's proven is a lie?...
    - EugeneAZ 9y ago
      Yeah, I need to clarify. Proven by in vitro only experiments: https://www.indiegogo.com/projects/dracos-may-be-effective-against-all-viruses https://www.indiegogo.com/projects/dracos-may-be-effective-a...
      - 9y ago
tomhoward 9y ago
My own experience, for what it's worth: I've been afflicted with what seems to be CFS for at least 10 years. I've been through the exasperating process of seeking diagnosis and treatment from conventional doctors. In the absence of any answers, I had to take matters into my own hands and attempt to get well with non-conventional remedies like paleo dieting, detoxing, nutritional supplements, yoga, etc. Nothing really moved the needle in any sustained way until I started experimenting with emotional healing therapies that work to identify and release deeply-held subconscious traumas and self-sabotaging beliefs. I've been doing that for 5-6 years now, and my wellbeing keeps improving at an ever-increasing rate. So, my n=1 anecdata suggests that yes it's a physiological ailment (i.e., involves mitochondria, ATP, cortisol, inflammation, oxidation, T-cells, and many other material processes within the body), but that stress and trauma is a major factor, and that by addressing the stress/trauma component, the physiological component corrects itself, slowly but surely. There is plenty of evidence to give credence to this explanation, if you simply search for studies linking excessive cortisol (a stress/fear/anxiety hormone) to immune function, auto-immunity and inflammation. What seems to be lacking in the mainstream medical zeitgeist is an acceptance that stress/trauma can be held deeply in the subconscious, and that there are effective techniques to identify and resolve it. But I can attest, yes, anecdotally, that it is a real phenomenon, and that effective treatments exist. If this were to be included in the research, I'm confident that CFS can be understood and an effective remedy can be made available to all sufferers. Any researchers who are interested to know more about my experiences are welcome to contact me (email in profile). I have some lab pathology reports on things like cortisol levels, iron/zinc/copper (and other minerals), thyroid hormones, inflammatory and auto-immunity indicators, chronic infection antibodies (EBV, CMV). I'd be very willing/happy to get other tests, as I'm not yet fully healed, so there's still time to do before/after comparisons of relevant indicators.
- static_noise 9y ago
  Can you tell us more about what was holding you back and what worked for you?
  - tomhoward 9y ago
    Can you tell us more about what was holding you back I can trace the domino trail back to as young as 3-5, and being very nervous, fearful and anxious. Some early negative social experiences may have been the genesis, and some of it may be inherited (those fearful/anxious tendencies are evident in both my parents and my sister to some degree). From there it's just a pattern of negative experiences compounding, though with the frustration of showing a lot of promise and potential (being somewhat naturally gifted in academic and sporting pursuits, and having some success socially and romantically as I reached adolescence), but always finding I'd sabotage myself, and every time that happened I'd come away feeling worse about myself. As I matured into adulthood the pattern continued: showing promise and having good opportunities in my career, social life and relationships, but always finding a way to mess things up, and becoming more angry, resentful and paralysed as time went by. By about 28 I was just falling apart and finding myself largely unable to function, and was increasingly exhausted and bedridden. Since I started working with subconscious healing techniques 5-6 years ago, I've been able to learn about how I've held onto all of those negative experiences and how they've been increasingly paralysing. This makes sense as an evolutionary self-defense mechanism; the more you find that your efforts to progress in the world cause you to have traumatic experiences that you can't understand, the more your mind/body applies a "braking" mechanism, to protect you from further trauma until you can understand what's going on and learn more healthy and beneficial behaviours. So really that's what the past 5-6 years has been about: using subconscious healing practices to understand how/why I was self-sabotaging, using that understanding to identify more positive/productive behaviours, put those into practice, observe results, rinse/repeat. The first 2-3 years was mostly just slowing the decline and bottoming out, and the subsequent 2-3 years has been a steady and accelerating path of improvement, in which career, friendships and relationships (and energy/enthusiasm) are all in good shape and getting better all the time. I'm reluctant to share too much about exactly what techniques I've used, as it can too easily turn into a pointless arguments with determined skeptics (of which I used to be one), and I just don't need to play that game anymore. In the mainstream medicine realm, CBT seems to be the one that does the most to work on the subconscious mind, though the little of it I've tried didn't appeal to me. Outside of that, things like meditation (if it works for you - it didn't for me), hypnotherapy (Milton Erickson-style), breathwork/breathing therapy, EFT/tapping are all popular. The specific techniques that have been most effective for me, I won't mention here as they really need many hours of discussion or reading to be fully understood and accepted, but you can find plenty of online material, including videos and books, by searching for things like "subconscious healing chronic fatigue". Hope that helps.
tudorw 9y ago
CFS is an umbrella term for a range of symptoms. I find the research into psychoneuroendocrinology very interesting, it's on the frontier of examining how our minds interact with our body to maintain a 'state', for example, it was recently discovered that bone marrow plays a role in the communication between the brain and the gut microbiota, we are a 'closed loop' system, our gut microbiota causes changes in our brain, our brain causes changes in microbiota.
- wellboy 9y ago
  Not really correct. CFS is a term for mitchondrial dysfunction, which causes a range of symptoms and where neither cause nor therapy is clear.
  - zik 9y ago
    CFS stands for "Chronic Fatigue Syndrome". Syndromes are "a group of symptoms which consistently occur together, or a condition characterized by a set of associated symptoms". It is literally a description of symptoms (which may have a variety of causes).
    - tudorw 9y ago
      "Neural mechanisms of central sensitization modulate the amplitude of sensory inputs and enhance conscious perception of nociceptive and interoceptive stimuli. Objective biomarkers and mechanisms remain elusive for explaining the disabling fatigue, exertional exhaustion and cognitive incapacitation. R01NS085131." http://www.jacionline.org/article/S0091-6749(16)32198-4/fulltext http://www.jacionline.org/article/S0091-6749(16)32198-4/full... "Conclusion The work supports the assertion that CFS should not be considered to fall within the spectrum of mtDNA disease. However, the current study cannot exclude a role for nuclear genes with a mitochondrial function, nor a role of mtDNA population variants in susceptibility to disease. This study highlights the need for more to be done to understand the pathophysiology of CFS." Clinically proven mtDNA mutations are not common in those with chronic fatigue syndrome. https://bmcmedgenet.biomedcentral.com/articles/10.1186/s12881-017-0387-6 https://bmcmedgenet.biomedcentral.com/articles/10.1186/s1288...
nihy 9y ago
CFS is in the blood. There are now several different researchers that have reported that there is something in the blood of patients that induces abnormal metabolism in cells. CFS cells taken out of the patient's blood and into healthy blood are mostly normal. Muscle cells grown in presence of CFS blood show altered metabolism. Only one group has published their findings here http://insight.jci.org/articles/view/89376 http://insight.jci.org/articles/view/89376 During this conference Ron Davis showed some of his data on this. CFS cells subjected to salt stress can't keep up with the resulting increased ATP demands: https://www.youtube.com/watch?v=s7bBMXQSmuM&t=25748 https://www.youtube.com/watch?v=s7bBMXQSmuM&t=25748 Another researcher present at the conference also found abnormally low metabolism in T cells of patients.
- nihy 9y ago
  A better slide from the conference comparing - Healthy plasma and healthy cells - CFS cells in CFS plasma - CFS cells exposed to salt ATP/salt stress - CFS cells exposed to pyruvate/salt stress https://www.youtube.com/watch?v=s7bBMXQSmuMt=25900 https://www.youtube.com/watch?v=s7bBMXQSmuMt=25900 Pyruvate allows the CFS cells to tollerate the stress, suggesting that there is a defect in energy production. Pyruvate is one the fuels used in the Krebs cycle to produce ATP.
- zkms 9y ago
  > Only one group has published their findings here http://insight.jci.org/articles/view/89376 http://insight.jci.org/articles/view/89376 that is a very interesting paper, ty for linking it here.
mac01021 9y ago
fuel, air, spark, compression. People are so much harder... :(
- wellboy 9y ago
  We are also engineered machines, just with 1000x more variables. :D
  - cpncrunch 9y ago
    If you look at a modern jet, it's pretty darn complex. The advantage is that if there's a problem you can look at the flight data to figure out why exactly the plane decided to do something you didn't expect.
    - mac01021 9y ago
      What do the flight data mostly consist of?
      - cpncrunch 9y ago
        https://en.wikipedia.org/wiki/Flight_recorder#Flight_data_recorder https://en.wikipedia.org/wiki/Flight_recorder#Flight_data_re...
Zarath 9y ago
Has anyone seen how this interacts with the ketogenic diet?
- rfugger 9y ago
  From the anecdotes I've seen, it's like anything else -- helps some people, and others not so much. I've never seen a reported recovery simply from following a keto diet, or any other diet for that matter. My several attempts at keto as a CFS sufferer didn't go well at all. (Yes, I increased my salt intake :)
  - Zarath 9y ago
    Hmm, I see. Thanks for sharing.
rrauenza 9y ago
I felt awful for a few months - achy and difficult to get out of bed. Turned out to be a vitamin D deficiency. At the bay area latitude, we barely get enough especially if you don't go outside enough. Worse if your skin pigmentation is darker. Thankfully this is something doctors screen as part of a normal blood workup. It isn't CFS -- but if anyone is having a similar experience, check with your doctor.
desireco42 9y ago
"The handsome man was once a photographer and adventurer. He traveled through the United States, studied Buddhism in India and Nepal, lived in an Ecuadorian rainforest..."
nyc111 9y ago
The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy https://search.informit.com.au/documentSummary;dn=119626231492520;res=IELNZC https://search.informit.com.au/documentSummary;dn=1196262314... I hope he sees this comment and have his son examined by a doctor who is knowledgeable with the microbiome and FMT.
bsbrown 9y ago
I've had CFS for over 25 years. We should not use the lack of cure as an excuse to not make progress. With any disease, it needs to be worked on from two angles, both physical and spiritual. The physical aspect is just a reflection of a deeper soul condition. We all have something called a karmic double or shadow--a psychic aspect of ourselves where we store negative energy. This whole picture goes beyond this one limited life. Most of you have probably noticed that at various times you feel sad or angry, even hateful. These are the energies we need to cleanse from our energy fields. They are downloaded on us the deeper you get into the illness. With chronic illness, we're often dealing with deep-rooted fear and that is why it takes so long to heal. It is very important to develop a spiritual life as a sick person, but I'm not implying that we should all go to church. Meditation can be very helpful yet towards the end of the illness, you won't be able to meditate very easily as you'll be blocked from your higher energies. If negative feelings come up, be with them and allow them to work through you instead of stuffing them down. Leave yourself time for this. Keep yourself in a positive space as much as possible. Some people are getting help from figures like Matt Kahn on YouTube who's enlightened and can teach people how to love in a world filled with judgment,etc. You will reach a point where you notice definite changes in your psychic state--more joy, peace and love. You'll become much stronger for having gone through this process. It does have a purpose. As for the physical aspect, many theories exists. Sometimes they agree with our experience, and sometimes not. I've always felt that what I'm experiencing is a potent toxin and a toxicologist in Hawaii has found that we do have a toxin in us similar to the ciguatera fish toxin that takes 20 years to get over. I use Edgar Cayce castor oil packs (abdomen) on a regular basis to cleanse the liver of these poisons. (They get worse as time goes on). Eat a good diet (always the first step in any healing regimen), consisting of whole grains, juices, lots of produce and lighter meats and dairy with as much organic ingredients as possible. Use herbs and natural substances to help with sleep--valerian,hops, etc. plus melatonin and suntheanine. Listen to your body when it comes to exercise. Find substances that support your immunity and break down the situation in your body. I've had luck with Wipe Out from Holographic Health, Immunocal by Immunotec, ProBoost thymus extract for T-cells, Colostrum for boosting B-cells, Neem leaf and milk thistle (liver and detox support). If you can work around the bouncing blood sugar, try a fast occasionally with a colonic or Edgar Cayce type enema. Fast on watermelon, lemon juice, citrus or apples in the fall that will scrape you out (crunchy, like delicious) You can also use flower remedies for mood--good ones at Perelandra. Use vitamins and minerals as support with a focus on anti-free radicals. Good luck and love to all of you!
bsbrown 9y ago
I wrote in a recent segment and wanted to ask/comment on the mitochondria issue with the nerves. My illness has been what I consider to be a never disease; they are inflamed at times or burning. When the CFS comes on I feel hot and then get nerve sensations. How does this have to do with the mitochondria? As time has progressed I feel less and less of this stuff in my body that originally took root in the area of my chest like an infection. How could this be mitochondria related?
Great_Mogul 9y ago
This can be a devastating illness. I stumbled across this a few days ago. "Incidence of irritable bowel syndrome and chronic fatigue following GI infection: a population-level study using routinely collected claims data" http://gut.bmj.com/content/early/2017/07/25/gutjnl-2017-313713 http://gut.bmj.com/content/early/2017/07/25/gutjnl-2017-3137...
dietervds 9y ago
Sharing this in case it helps anyone. My wife suffered from CFS for over 10 years. In the final stage she could hardely walk anymore because of the muscle pain, and was on 26 pills per day. We spent years on trying all kinds of stuff and seeing all kinds of doctors. What 'cured' her in the end was us figuring out for ourselves that what was diagnosed as CFS was actually closer to insuline resistance. After some experimentation we went on a ketosis diet. Three months later she felt fine, her blood work was perfect, almost no more pills. Six months later she was off the pills, and even able to get pregnant (wasn't possible before because of the pills). Now we're a happy healthy family :-) Maybe this helps someone who is in a similar boat.
- Nomentatus 9y ago
  Any chance nocturnal seizures were a factor? Ketosis would address that and most with epilepsy only have nocturnal seizures (not nec involving movement) and are never diagnosed.
Nomentatus 9y ago
Consider EDS, particularly if you also have allergy (MCAS - mast cell activation) sypmtoms. A lot of people diagnosed with CFS actually have Ehlers-Danlos Syndrome, which affects 1 or 2 percent of the population and is undiagnosed in 95% of patients. Very few doctors know enough to rule it in or out, or have even heard of MCAS. microbiota may be involved with CFS http://www.techtimes.com/articles/198798/20170225/chronic-fatigue-syndrome-mysterious-reason-traced-to-immune-fault.htm http://www.techtimes.com/articles/198798/20170225/chronic-fa...

230 points by mcone 9y ago

There was another Chronic Fatigue Syndrome post a few days ago that has some interesting comment threads: https://news.ycombinator.com/item?id=14896255 https://news.ycombinator.com/item?id=14896255 (Not a dupe, just a different article)

the_absurdist 9y ago

This is what happens when parents indulge far-fetched academic haziness because they don't have the strength to confront the obvious: their kid is depressed and lacking the social skills to cope with life. Give that 33 year old a beautiful woman, money, and an executive level role at a tech firm and watch him suddenly only need 6 hours a day of sleep. Mystery solved.

_tulpa 9y ago
That's... Not how any of that works
Method-X 9y ago
He's being fed intravenously and can't speak. Read the article.
wellboy 9y ago
CFS is not an imbalance of neuro-transmitters in the brain, which it is the case for all psychological illnesses. As for the latest research, it is a dysfunction of all mitochondria in the body. More specifically, when ATP is reduced to ADP to produce energy, N+ and O+ radicals are created. Usually, those are eaten up by killer cells. However, in CFS patients, this mechanism is damaged, so that way too much N+ and O+ are created or, they are not eaten up fast enough after only very little exertion. That is why, CFS patients are bedridden for weeks and months after only running for the bus for 2 mins, because their body becomes overloaded with free radicals. Those damage your cell membranes and create all sorts of pain, fatigue, brain fog, and many more symptoms. I've been suffering from CFS for almost 3 years now. I went from building my own startup to massive pain and other symptoms within 24h. Over the years, I managed to reduce the symptoms by staying in bed completely for 1 year and paying a lot of attention to not exert myself for the remainder. I can do small things now without having "crashes" and am taking a lot of anti-oxidants after having found a doctor (Prof. Huber) in Germany who has specialized in CFS and developed a therapy. He said there are only 10 more doctors in Germany who know about CFS. Before him, I went to see 30 other doctors who didn't give a damn about finding out what's wrong with me. They also will not do more than the usual testing, because they don't want to exceed their per patient budget. You need to find a private insurance doctor. So for 2 years all doctors have told me it's all psychological. I went to see psychiatrists who prescribed me heavy anti-depressant. They told me I have heavy depression. When I asked them why they would say that, because I don't fulfill the depression criteria they became angry. In order to be diagnosed with depression, you need a minimum of symptoms including suicidal thoughts, sleep disturbances, change in appetite etc. I did not have any of those, I just had massive pins and needle pains all over body, blurred vision and muscle twitching. I told that to the psychiatrists and became angry, because I questioned their authority. They are the expert and not me. Then they tried to gaslight me by saying that I feel depressed multiple times even though I told them that I don't. Then they told me I am a narcissist, manic, anti-social etc. and that is why I have these symptoms. After 2 years I finally found a doctor who was not like this and who did more tests. He found elevated S100B protein (the CRP of the nervous system), MDA-LDL (free radicals) and low killer cells. So, this is what you can expect when having CFS, doctors become angry, they try to actually gaslight you. Doctors vigorously say that CFS doesn't exist even though it is described specifically in the ICD. Apart from that l, your parents will desperately try to convince you that you're mentally ill and that it's all in your head, because that's what the doctors say and become desperately angry to try to convince you and maybe also cut contact with you, because they can't see their child withering away in bed, while he/she refuses to "listen to the doctors". There are also other examples of recovery, so it is possible. However, most patients do not recover ever, because they have kids or need to work a job. If someone with CFS has kids or a they need to work, it's almost a death sentence, because you cannot do anything for years if you want to recover and you should not have more than 5 or so crashes in total, because the recovery time increases by several months for every crash, at least at the current state of therapy. So, it's hard, but I've now had a 2 out of 5 main symptoms disappear after 2 years of avoidance of exertion and hope the other ones clear in the next few months.
DiabloD3 9y ago
As someone who suspects I may at least somewhat suffer from Chronic Fatigue Syndrome, you're... not even all that wrong. I know that science is now saying that "decision fatigue" doesn't exist, but I think they measured the wrong thing. It's straight up "give a fuck fatigue". It isn't work that does it to me; I can go to work, enjoy work, get enough shit done that the money keeps coming in and my customers are happy with the service I provide. You know what drains me? The boringness of being an adult and having nothing to actually really look forwards to. Sometimes I'll sleep 10 hours straight and get up tired. Sometimes I have to do the mental equivalent of grinding my transmission gears because I'm not paying attention to the clutch, so the flow state never, well, flows. The mindless activities are hard to concentrate on, but they need to be done, so I exert far more give-a-fuck-ium than I should have to. And the thing is, I've always been this way. I didn't become this way, I didn't slowly turn into this, I didn't become burned out. It's part of me. I mean, I'm most certainly an introvert, so are a lot of the HN community; being with people in social situations are extremely taxing at times... it, too, burns a lot of my precious give-a-fuck-ium. You know what recharges me? Having a good time with someone I know, where we both enjoy each other's company, where its a nice relaxed thing where neither of us have anything to prove to the other. Problem is, women are people too. I mean, we're a male-centric community here, we work in male-centric environments, sometimes people like us forget... women have all the same problems we do. They have just as many problems connecting as we do., and we keep circling around in these holding patterns and just grinding their gears because they never find that one person to connect with just as we can't. You can't just give someone that beautiful woman. They need the right beautiful woman. I think the problem that keeps happening for a lot of us is we keep finding the wrong women... not bad women, just wrong for us. It really throws a wrench in things because humans seem to need those close relationships with others to function properly, and we're not making them... and it's sapping our ability to regenerate our give-a-fuck-ium.
- wellboy 9y ago
  That doesn't sound like CFS though. If you have CFS, working for a few hours or jogging for a few mins, leaves you in pain and fatigue for weeks. Chronic Fatigue Syndrome is also a very bad name, because many patients don't have fatigue, but they have very high exercise intolerance (jogging for a few mins leaves you bedridden). That's why the current discussion is to rename it to S.E.I.D (Systemic Exercise Intolerance Disease). Yours sounds like a mild depression, which can be easily treated through therapy or anti-depressants if needed. But I would see a doctor before of course.
static_noise 9y ago
The root cause of depression is chemical not psychological. It's a natural process and everybody gets depressed sometimes. If you get depressed, you can fix it by behaving like a normal person following normal person schedules and doing normal person things like sports and eating good food. Well... unless you can't because you're really sick and not just depressed. Those with CFS have tried following the recipy of getting cured and failed. Time and time again. Sometimes they succeed for no good reason but mostly after some time of being normal it all falls apart again.
- vivekd 9y ago
  See, I don't know how meaningful the chemical not psychological distinction is. I mean doesn't every thing we feel have chemical components?
  - static_noise 9y ago
    What chemical corresponds to the mental picture of a cat? Sure, they are heavily interrelated. They are vastly different models of the same thing. While we can understand some processes simply by chemistry, we don't get too far with that when trying to understand social behavior. On the other hand psychology can model processes and behaviors on another level. Sometimes they overlap well but far too seldom. They will probably not converge well in our lifetime because we are really slow in understanding of complex interrelated systems and cannot make all the experiments we need to quickly advance scientifically.
- jamestnz 9y ago
  >The root cause of depression is chemical I wonder if you were speaking generally here, or if you were referring specifically to the Chemical Imbalance theory of depression/anxiety. Often espoused by the marketing departments of Big Pharma, and by now firmly lodged in the public consciousness, the idea that abnormal monoamine levels (e.g. serotonin, noradrenaline) in the brain causes depression, is (to say the least) highly controversial. Some might even call it "debunked". Or, more charitably perhaps, just a highly persistent meme that's never really had much to do with science from the get-go. BTW, I say this as someone who saw successful results using SSRIs (Citalopram) as a treatment for depression some years ago. Given that the relationship between serotonin and depression seems subtle, indirect, and poorly understood at best, I don't pretend to be able to explain why SSRI treatment "worked" for me! Placebo? Coincidence? Genuine effect which empirically exists but we do not yet understand the mechanism (a bit like lithium)?
pjc50 9y ago
This is just another version of the ignorant "depression == sadness" meme. Depression and CFS aren't exactly the same thing either.
code_duck 9y ago
I had an undiagnosed condition that caused symptoms similar to chronic fatigue for years, and had even been linked to depression and bipolar - celiac. Your advice would not have been helpful at all. Now that I'm eating gluten free i am fine.
sctb 9y ago
Whether you intended to troll with this comment or not, it's so far disconnected from the actual topic of conversation and dismissive of the people involved that the effect is the same. Please post civilly and substantively on Hacker News or not at all.
- the_absurdist 9y ago
  Whether you like it or not...Hacker News exceeds the boundaries of your politically correct Silicon Valley echo chamber. At least be honest about your criticism and say something like: "I'm uncomfortable by how out of step your comment is with my obligation to displace personal responsibility away from anyone who has a claim to victimhood."
deleted 9y ago
[deleted]

hamsterjam 9y ago

I thought I had CFS for years. Until I started exercising and eating right and stopped abusing coffee.

c3534l 9y ago

CFS is a controversial diagnosis.

static_noise 9y ago
I fear that it's becoming a catchall-diagnosis for illnesses the doctors don't understand and can't cure. The current catchall is "it's psychosomatic" or "get over it already you lazy *". Most doctors can only handle diseases that can be cured by pills or cutting up the patient. With CFS we have something that seems to cleverly evade all attempts to cure it or even define what it actually is and how to properly diagnose it. I surely do hope that this changes soon!
- harryjo 9y ago
  The lack of an objective test is more problematic tan the lack of a cure.
  - lez 9y ago
    There are tests available, see: http://drmyhill.co.uk/wiki/Mitochondrial_Function_Profile http://drmyhill.co.uk/wiki/Mitochondrial_Function_Profile (and more on that page)
    - manmal 9y ago
      Dr Myhill is quite controversial, and many who followed her advice were not helped by it. Always take advice with a grain of salt if the advice giver peddles her own line of supplements.
  - manmal 9y ago
    There was very recently an article about a maybe-upcoming test: https://news.ycombinator.com/item?id=14896255 https://news.ycombinator.com/item?id=14896255
ekianjo 9y ago
kind of similar to fibromyalgia, also very difficult to diagnose with accuracy.

chmike 9y ago

I'm on safary (iPad) and can't read the article. Page is blank.

Angostura 9y ago
Tap the Reader icon in the address bar and you’ll be able to read it fine.
- chmike 9y ago
  Thank you. Didn't thought of that. Can't delete my question anymore. I apologize for the noise.
  - Angostura 9y ago
    Wasn't noise. You called out poor design.
aw3c2 9y ago
Maybe try a different browser, works fine with Firefox for me.

rmetzler 9y ago

Astonishing, how none of these articles and comments seem to mention medical marijuana. The /r/trees subreddit might be filter bubble, but the fact that you're able to find individual stories that point at MMJ helping at least some people with Chronic Fatigue Syndrome, seems interesting. Also notice that the patient from this article went to Jamaica and India, two destinations famous for their cannabis. Maybe the patient's endocannabinoid system is off.

tudorw 9y ago
indeed, https://www.ncbi.nlm.nih.gov/pubmed/18698000 https://www.ncbi.nlm.nih.gov/pubmed/18698000 The endocannabinoid anandamide is a substrate for the human polymorphic cytochrome P450 2D6. (The discovery of anandamide came from research into CB1 and CB2, as it was inevitable that a naturally occurring (endogenous) chemical would be found to affect these receptors.) Gene's also seem to play a role https://mobile.nytimes.com/2015/03/08/opinion/sunday/the-feel-good-gene.html https://mobile.nytimes.com/2015/03/08/opinion/sunday/the-fee...
DanBC 9y ago
> but the fact that you're able to find individual stories that point at MMJ helping at least some people with Chronic Fatigue Syndrome, seems interesting. No, it's not in any way interesting. You'll always find people saying "this helped me", where "this" is cannabis, homeopathy, crystals, prayer, some type of medication, some type of surgery.
- tudorw 9y ago
  Yes, but the OP reply has a point, anecdotal evidence is often a factor in finding off label uses for pharmaceuticals, so it's worth recording and investigating anecdotal evidence, it's certainly not the basis for ongoing advice, but it is a starting point for possibly worthy research. "When a drug is prescribed off-label, however, the risks may increase. That’s because the safety and efficacy of off-label uses has not been evaluated by the FDA. Instead, off-label use is often based on smaller sample sizes and anecdotal evidence, such as how well a particular doctor sees that an off-label use has worked for her patients in the past. While information like this can seem compelling, the drug hasn’t been put to the same rigorous scientific testing and analysis as it has for its on-label uses. Unexpected side effects can pop up, some of them serious." http://www.rotlaw.com/legal-library/what-is-off-label-use/ http://www.rotlaw.com/legal-library/what-is-off-label-use/

wellboy 9y ago

Since some comments made the comparison to psychological factors, CFS is not an imbalance of neuro-transmitters in the brain, which it is the case for all psychological illnesses. As for the latest research, it is a dysfunction of all mitochondria in the body. More specifically, when ATP is reduced to ADP to produce energy, N+ and O+ radicals are created. Usually, those are eaten up by killer cells. However, in CFS patients, this mechanism is damaged, so that way too much N+ and O+ are created or, they are not eaten up fast enough after only very little exertion. That is why, CFS patients are bedridden for weeks and months after only running for the bus for 2 mins, because their body becomes overloaded with free radicals. Those damage your cell membranes and create all sorts of pain, fatigue, brain fog, and many more symptoms. I've been suffering from CFS for almost 3 years now. I went from building my own startup and loving life to massive pain and other symptoms within 24h. Over the years, I managed to reduce the symptoms by staying in bed completely for 1 year and paying a lot of attention to not exert myself for the remainder. I can do small things now without having "crashes" and am taking a lot of anti-oxidants after having found a doctor (Prof. Huber) in Germany who has specialized in CFS and developed a therapy. He said there are only 10 more doctors in Germany who know about CFS. Before him, I went to see 30 other doctors who didn't give a damn about finding out what's wrong with me. Doctors also will not do more than the usual testing, because they don't want to exceed their per patient budget. You need to find a private insurance doctor. So for 2 years all doctors have told me it's all psychological. I went to see psychiatrists who prescribed me heavy anti-depressant. They told me I have heavy depression. When I asked them why they would say that, because I don't fulfill the depression criteria they became angry. In order to be diagnosed with depression, you need a minimum of symptoms including suicidal thoughts, sleep disturbances, change in appetite etc. I did not have any of those, I just had massive pins and needle pains all over body, blurred vision and muscle twitching. I told that to the psychiatrists and became angry, because I questioned their authority. They are the expert and not me. Then they tried to gaslight me by saying that I feel depressed multiple times even though I told them that I don't. Then they told me I am a narcissist, manic, anti-social etc. and that is why I have these symptoms. After 2 years I finally found a doctor who was not like this and who did more tests. He found elevated S100B protein (the CRP of the nervous system), MDA-LDL (free radicals) and low killer cells. So, this is what you can expect when having CFS, doctors become angry, they try to actually gaslight you. Doctors vigorously say that CFS doesn't exist even though it is described specifically in the ICD. Apart from that, your parents will desperately try to convince you that you're mentally ill and that it's all in your head, because that's what the doctors say and become desperately angry to try to convince you and maybe also cut contact with you, because they can't see their child withering away in bed, while he/she refuses to "listen to the doctors". There are examples of recovery, so it is possible. However, most patients do not recover ever, because they have kids or need to work a job. If someone with CFS has kids or a they need to work, it's almost a death sentence, because you cannot do anything for years if you want to recover and you should not have more than 5 or so crashes in total, because the recovery time increases by several months for every crash, at least at the current state of therapy. So, it's hard, but I've now had a 2 out of 5 main symptoms disappear after 2 years of avoidance of exertion and hope the other ones clear in the next few months.

afpx 9y ago

After reading all of the Sapolsky books, I'm fascinated and saddened by how much impact long-term psychological stress can have on Human health. It seriously wrecks havoc and can subtlety restructure the brain in ways that can be difficult to reverse. But, yet, Humans also seem to relish in displaying how much stress they can withstand while acting like it doesn't effect them at all. It's a sick badge of honor. I've seen people tolerate and even feign enjoyment of high-stress lifestyles for decades before finally succumbing to it. Nowadays, when I even feel the slightest bit of stress response continuing for longer than a day, I try to completely remove myself from the environment that could be causing it.

jfoutz 9y ago
Culture relishes how much stress one can handle. Not humans. It's a learned behavior.
- chippy 9y ago
  Depends on definitions. One could see that a human can relish dealing with the challenge of a freely entered stressful situation. For example, giving birth.
- cpncrunch 9y ago
  >Culture relishes how much stress one can handle. Not humans. It's a learned behavior. It might define how much stress people try to handle. But it certainly doesn't define the limit of what you can handle (which is completely out of your control).
ngold 9y ago
As a bit of a person that enjoys quit times. Jump into a crowd every now and again. Just to keep the blood running.
chrismealy 9y ago
Sapolsky writes about a certain amount of stress being good for you. IIRC he cites a study about people in retirement homes do better if they are made to do chores.

Madmallard 9y ago

It's mitochondrial dysfunction Fairly obvious if you look enough at the research mitochondrial disease patients rarely get diagnosed as adults and they often suffer a lot of complications unnecessarily as a result Our medical system is awful at dealing with it - chronic stress and anxiety are certainly related to metabolic disturbances as well according to research so that makes it an easy target for doctors to "explain away". also antibiotics cause mitochondrial dysfunction (particularly bacteriocidal antibiotics) chronic stress and sleep deprivation "raise your susceptibilty" to chronic fatigue and fibromyalgia - yeah becuase they lead to excess oxidative stress CFS patients are probably surgery risks as well then since propofol and the like inhibit mitochondria

EugeneAZ 9y ago
>Our medical system... Yeah, an anecdote. The USA spend through the federal (only!) budget roughly $4 000 B every year, yet they don't fund properly even people like Dr. Todd Rider. The man asked just for $2 M for his DRACO research (100% effective proved cure against viruses like flu, herpes, etc) - it's like to ask for two coins from a stack 4 km long. Two coins and four kilometers stack of those. Every effing year! And do you know how they treated Dr. Tullio Simoncini? This society is fawked, hahahah.
- dpark 9y ago
  > The man asked just for $2 M for his DRACO research (100% effective proved cure against viruses like flu, herpes, etc) Why would you still be researching if it's 100% proven? Maybe the claim that it's proven is a lie?...
  - EugeneAZ 9y ago
    Yeah, I need to clarify. Proven by in vitro only experiments: https://www.indiegogo.com/projects/dracos-may-be-effective-against-all-viruses https://www.indiegogo.com/projects/dracos-may-be-effective-a...
    - 9y ago

tomhoward 9y ago

My own experience, for what it's worth: I've been afflicted with what seems to be CFS for at least 10 years. I've been through the exasperating process of seeking diagnosis and treatment from conventional doctors. In the absence of any answers, I had to take matters into my own hands and attempt to get well with non-conventional remedies like paleo dieting, detoxing, nutritional supplements, yoga, etc. Nothing really moved the needle in any sustained way until I started experimenting with emotional healing therapies that work to identify and release deeply-held subconscious traumas and self-sabotaging beliefs. I've been doing that for 5-6 years now, and my wellbeing keeps improving at an ever-increasing rate. So, my n=1 anecdata suggests that yes it's a physiological ailment (i.e., involves mitochondria, ATP, cortisol, inflammation, oxidation, T-cells, and many other material processes within the body), but that stress and trauma is a major factor, and that by addressing the stress/trauma component, the physiological component corrects itself, slowly but surely. There is plenty of evidence to give credence to this explanation, if you simply search for studies linking excessive cortisol (a stress/fear/anxiety hormone) to immune function, auto-immunity and inflammation. What seems to be lacking in the mainstream medical zeitgeist is an acceptance that stress/trauma can be held deeply in the subconscious, and that there are effective techniques to identify and resolve it. But I can attest, yes, anecdotally, that it is a real phenomenon, and that effective treatments exist. If this were to be included in the research, I'm confident that CFS can be understood and an effective remedy can be made available to all sufferers. Any researchers who are interested to know more about my experiences are welcome to contact me (email in profile). I have some lab pathology reports on things like cortisol levels, iron/zinc/copper (and other minerals), thyroid hormones, inflammatory and auto-immunity indicators, chronic infection antibodies (EBV, CMV). I'd be very willing/happy to get other tests, as I'm not yet fully healed, so there's still time to do before/after comparisons of relevant indicators.

static_noise 9y ago
Can you tell us more about what was holding you back and what worked for you?
- tomhoward 9y ago
  Can you tell us more about what was holding you back I can trace the domino trail back to as young as 3-5, and being very nervous, fearful and anxious. Some early negative social experiences may have been the genesis, and some of it may be inherited (those fearful/anxious tendencies are evident in both my parents and my sister to some degree). From there it's just a pattern of negative experiences compounding, though with the frustration of showing a lot of promise and potential (being somewhat naturally gifted in academic and sporting pursuits, and having some success socially and romantically as I reached adolescence), but always finding I'd sabotage myself, and every time that happened I'd come away feeling worse about myself. As I matured into adulthood the pattern continued: showing promise and having good opportunities in my career, social life and relationships, but always finding a way to mess things up, and becoming more angry, resentful and paralysed as time went by. By about 28 I was just falling apart and finding myself largely unable to function, and was increasingly exhausted and bedridden. Since I started working with subconscious healing techniques 5-6 years ago, I've been able to learn about how I've held onto all of those negative experiences and how they've been increasingly paralysing. This makes sense as an evolutionary self-defense mechanism; the more you find that your efforts to progress in the world cause you to have traumatic experiences that you can't understand, the more your mind/body applies a "braking" mechanism, to protect you from further trauma until you can understand what's going on and learn more healthy and beneficial behaviours. So really that's what the past 5-6 years has been about: using subconscious healing practices to understand how/why I was self-sabotaging, using that understanding to identify more positive/productive behaviours, put those into practice, observe results, rinse/repeat. The first 2-3 years was mostly just slowing the decline and bottoming out, and the subsequent 2-3 years has been a steady and accelerating path of improvement, in which career, friendships and relationships (and energy/enthusiasm) are all in good shape and getting better all the time. I'm reluctant to share too much about exactly what techniques I've used, as it can too easily turn into a pointless arguments with determined skeptics (of which I used to be one), and I just don't need to play that game anymore. In the mainstream medicine realm, CBT seems to be the one that does the most to work on the subconscious mind, though the little of it I've tried didn't appeal to me. Outside of that, things like meditation (if it works for you - it didn't for me), hypnotherapy (Milton Erickson-style), breathwork/breathing therapy, EFT/tapping are all popular. The specific techniques that have been most effective for me, I won't mention here as they really need many hours of discussion or reading to be fully understood and accepted, but you can find plenty of online material, including videos and books, by searching for things like "subconscious healing chronic fatigue". Hope that helps.

tudorw 9y ago

CFS is an umbrella term for a range of symptoms. I find the research into psychoneuroendocrinology very interesting, it's on the frontier of examining how our minds interact with our body to maintain a 'state', for example, it was recently discovered that bone marrow plays a role in the communication between the brain and the gut microbiota, we are a 'closed loop' system, our gut microbiota causes changes in our brain, our brain causes changes in microbiota.

wellboy 9y ago
Not really correct. CFS is a term for mitchondrial dysfunction, which causes a range of symptoms and where neither cause nor therapy is clear.
- zik 9y ago
  CFS stands for "Chronic Fatigue Syndrome". Syndromes are "a group of symptoms which consistently occur together, or a condition characterized by a set of associated symptoms". It is literally a description of symptoms (which may have a variety of causes).
  - tudorw 9y ago
    "Neural mechanisms of central sensitization modulate the amplitude of sensory inputs and enhance conscious perception of nociceptive and interoceptive stimuli. Objective biomarkers and mechanisms remain elusive for explaining the disabling fatigue, exertional exhaustion and cognitive incapacitation. R01NS085131." http://www.jacionline.org/article/S0091-6749(16)32198-4/fulltext http://www.jacionline.org/article/S0091-6749(16)32198-4/full... "Conclusion The work supports the assertion that CFS should not be considered to fall within the spectrum of mtDNA disease. However, the current study cannot exclude a role for nuclear genes with a mitochondrial function, nor a role of mtDNA population variants in susceptibility to disease. This study highlights the need for more to be done to understand the pathophysiology of CFS." Clinically proven mtDNA mutations are not common in those with chronic fatigue syndrome. https://bmcmedgenet.biomedcentral.com/articles/10.1186/s12881-017-0387-6 https://bmcmedgenet.biomedcentral.com/articles/10.1186/s1288...

nihy 9y ago

CFS is in the blood. There are now several different researchers that have reported that there is something in the blood of patients that induces abnormal metabolism in cells. CFS cells taken out of the patient's blood and into healthy blood are mostly normal. Muscle cells grown in presence of CFS blood show altered metabolism. Only one group has published their findings here http://insight.jci.org/articles/view/89376 http://insight.jci.org/articles/view/89376 During this conference Ron Davis showed some of his data on this. CFS cells subjected to salt stress can't keep up with the resulting increased ATP demands: https://www.youtube.com/watch?v=s7bBMXQSmuM&t=25748 https://www.youtube.com/watch?v=s7bBMXQSmuM&t=25748 Another researcher present at the conference also found abnormally low metabolism in T cells of patients.

nihy 9y ago
A better slide from the conference comparing - Healthy plasma and healthy cells - CFS cells in CFS plasma - CFS cells exposed to salt ATP/salt stress - CFS cells exposed to pyruvate/salt stress https://www.youtube.com/watch?v=s7bBMXQSmuMt=25900 https://www.youtube.com/watch?v=s7bBMXQSmuMt=25900 Pyruvate allows the CFS cells to tollerate the stress, suggesting that there is a defect in energy production. Pyruvate is one the fuels used in the Krebs cycle to produce ATP.
zkms 9y ago
> Only one group has published their findings here http://insight.jci.org/articles/view/89376 http://insight.jci.org/articles/view/89376 that is a very interesting paper, ty for linking it here.

mac01021 9y ago

fuel, air, spark, compression. People are so much harder... :(

wellboy 9y ago
We are also engineered machines, just with 1000x more variables. :D
- cpncrunch 9y ago
  If you look at a modern jet, it's pretty darn complex. The advantage is that if there's a problem you can look at the flight data to figure out why exactly the plane decided to do something you didn't expect.
  - mac01021 9y ago
    What do the flight data mostly consist of?
    - cpncrunch 9y ago
      https://en.wikipedia.org/wiki/Flight_recorder#Flight_data_recorder https://en.wikipedia.org/wiki/Flight_recorder#Flight_data_re...

Zarath 9y ago

Has anyone seen how this interacts with the ketogenic diet?

rfugger 9y ago
From the anecdotes I've seen, it's like anything else -- helps some people, and others not so much. I've never seen a reported recovery simply from following a keto diet, or any other diet for that matter. My several attempts at keto as a CFS sufferer didn't go well at all. (Yes, I increased my salt intake :)
- Zarath 9y ago
  Hmm, I see. Thanks for sharing.

rrauenza 9y ago

I felt awful for a few months - achy and difficult to get out of bed. Turned out to be a vitamin D deficiency. At the bay area latitude, we barely get enough especially if you don't go outside enough. Worse if your skin pigmentation is darker. Thankfully this is something doctors screen as part of a normal blood workup. It isn't CFS -- but if anyone is having a similar experience, check with your doctor.

desireco42 9y ago

"The handsome man was once a photographer and adventurer. He traveled through the United States, studied Buddhism in India and Nepal, lived in an Ecuadorian rainforest..."

nyc111 9y ago

The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy https://search.informit.com.au/documentSummary;dn=119626231492520;res=IELNZC https://search.informit.com.au/documentSummary;dn=1196262314... I hope he sees this comment and have his son examined by a doctor who is knowledgeable with the microbiome and FMT.

bsbrown 9y ago

I've had CFS for over 25 years. We should not use the lack of cure as an excuse to not make progress. With any disease, it needs to be worked on from two angles, both physical and spiritual. The physical aspect is just a reflection of a deeper soul condition. We all have something called a karmic double or shadow--a psychic aspect of ourselves where we store negative energy. This whole picture goes beyond this one limited life. Most of you have probably noticed that at various times you feel sad or angry, even hateful. These are the energies we need to cleanse from our energy fields. They are downloaded on us the deeper you get into the illness. With chronic illness, we're often dealing with deep-rooted fear and that is why it takes so long to heal. It is very important to develop a spiritual life as a sick person, but I'm not implying that we should all go to church. Meditation can be very helpful yet towards the end of the illness, you won't be able to meditate very easily as you'll be blocked from your higher energies. If negative feelings come up, be with them and allow them to work through you instead of stuffing them down. Leave yourself time for this. Keep yourself in a positive space as much as possible. Some people are getting help from figures like Matt Kahn on YouTube who's enlightened and can teach people how to love in a world filled with judgment,etc. You will reach a point where you notice definite changes in your psychic state--more joy, peace and love. You'll become much stronger for having gone through this process. It does have a purpose. As for the physical aspect, many theories exists. Sometimes they agree with our experience, and sometimes not. I've always felt that what I'm experiencing is a potent toxin and a toxicologist in Hawaii has found that we do have a toxin in us similar to the ciguatera fish toxin that takes 20 years to get over. I use Edgar Cayce castor oil packs (abdomen) on a regular basis to cleanse the liver of these poisons. (They get worse as time goes on). Eat a good diet (always the first step in any healing regimen), consisting of whole grains, juices, lots of produce and lighter meats and dairy with as much organic ingredients as possible. Use herbs and natural substances to help with sleep--valerian,hops, etc. plus melatonin and suntheanine. Listen to your body when it comes to exercise. Find substances that support your immunity and break down the situation in your body. I've had luck with Wipe Out from Holographic Health, Immunocal by Immunotec, ProBoost thymus extract for T-cells, Colostrum for boosting B-cells, Neem leaf and milk thistle (liver and detox support). If you can work around the bouncing blood sugar, try a fast occasionally with a colonic or Edgar Cayce type enema. Fast on watermelon, lemon juice, citrus or apples in the fall that will scrape you out (crunchy, like delicious) You can also use flower remedies for mood--good ones at Perelandra. Use vitamins and minerals as support with a focus on anti-free radicals. Good luck and love to all of you!

bsbrown 9y ago

I wrote in a recent segment and wanted to ask/comment on the mitochondria issue with the nerves. My illness has been what I consider to be a never disease; they are inflamed at times or burning. When the CFS comes on I feel hot and then get nerve sensations. How does this have to do with the mitochondria? As time has progressed I feel less and less of this stuff in my body that originally took root in the area of my chest like an infection. How could this be mitochondria related?

Great_Mogul 9y ago

This can be a devastating illness. I stumbled across this a few days ago. "Incidence of irritable bowel syndrome and chronic fatigue following GI infection: a population-level study using routinely collected claims data" http://gut.bmj.com/content/early/2017/07/25/gutjnl-2017-313713 http://gut.bmj.com/content/early/2017/07/25/gutjnl-2017-3137...

dietervds 9y ago

Sharing this in case it helps anyone. My wife suffered from CFS for over 10 years. In the final stage she could hardely walk anymore because of the muscle pain, and was on 26 pills per day. We spent years on trying all kinds of stuff and seeing all kinds of doctors. What 'cured' her in the end was us figuring out for ourselves that what was diagnosed as CFS was actually closer to insuline resistance. After some experimentation we went on a ketosis diet. Three months later she felt fine, her blood work was perfect, almost no more pills. Six months later she was off the pills, and even able to get pregnant (wasn't possible before because of the pills). Now we're a happy healthy family :-) Maybe this helps someone who is in a similar boat.

Nomentatus 9y ago
Any chance nocturnal seizures were a factor? Ketosis would address that and most with epilepsy only have nocturnal seizures (not nec involving movement) and are never diagnosed.

Nomentatus 9y ago

Consider EDS, particularly if you also have allergy (MCAS - mast cell activation) sypmtoms. A lot of people diagnosed with CFS actually have Ehlers-Danlos Syndrome, which affects 1 or 2 percent of the population and is undiagnosed in 95% of patients. Very few doctors know enough to rule it in or out, or have even heard of MCAS. microbiota may be involved with CFS http://www.techtimes.com/articles/198798/20170225/chronic-fatigue-syndrome-mysterious-reason-traced-to-immune-fault.htm http://www.techtimes.com/articles/198798/20170225/chronic-fa...