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Stanford scientist searches for answer to his son’s Chronic Fatigue Syndrome (mercurynews.com)
230 points by mcone 66 days ago | hide | past | web | 159 comments | favorite



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.


I suffered from fatigue for some months and what helped me is to think about it as your brain being a CPU with a message queue. When the CPU is operating below 100% the queue is empty all the time. But when it comes above 100% the queue starts to get longer and longer. And it is very very difficult to reduce the amount of messages sent to the queue.

Messages can be anything the brain should handle: hormones, sight, hearing, thoughts, anything.

When the queue grows your body also starts to work stange. And this can cause serious issues[1]. And also causes more and more stress wich let the queue grow even more.

So I also believe that stress and trauma are causes and when treated reduce the message queue.

[1] for me this was a lot of muscle contraction causing insulin issues and because of that more stress.


I have a similar point of view about meditation. It shuts down inputs to this queue as much as possible.


I've had a similar experience where I'd describe meditation as a high priority filter for the messages in my brain's queue.


I've meditated quite a bit. Been through some stressful events in the past few years (charged with drug trafficking,

lost access to my child). I find three things have help, in order of descending importance /: meditation, jogging, weight training.

But without meditation life is noticeable worse.

So while we're using the computer metaphor, maybe meditation is like Garbage Collection:

* Enables you to develop your application without having to free memory.

* Allocates objects on the managed heap efficiently.

* Reclaims objects that are no longer being used, clears their memory, and keeps the memory available for future allocations. Managed objects automatically get clean content to start with, so their constructors do not have to initialize every data field.

* Provides memory safety by making sure that an object cannot use the content of another object.

Yep, I'm gonna run with that.


Hi Tom

Quick question related to "emotional healing therapies": how do you search for therapists that can actually help here. For me it is kind of hard to differ between esoteric charlatans and actual experts. Is there any special approach to searching them you would recommend?


Clinical psych professor here.

This is a tricky question because there is questionable stuff out there, but on the other hand a lot of scientifically supported therapies are probably working for reasons other than their purported reasons (due to publication bias, etc.). To complicate things more, there are some therapies that seem like quackery that seem to work for reasons no one really understands. So people purporting to be adhering to "empirically supported therapy" (a kind of political buzzword) might actually be doing no better than someone else who doesn't explicitly advertise that, but who is rigorously and critically evaluating the scientific literature.

My advice is to pay attention to where someone got their degree, and how they describe themselves. By degree I don't mean you need to fetishize invalid status stuff, but look for people from degree programs you trust. If you don't feel comfortable with someone, look elsewhere. Don't feel uncomfortable asking them about their theoretical orientation or thinking about cases.


> but look for people from degree programs you trust

How is someone who doesn't really keep tabs on departments of psychology supposed to have developed a sense of trust of particularly degree programs?

Do you mean like preferring Vanderbilt's psychology program over Harvard's? Or preferring Psychology over Acupuncture?


Unfortunately there's no science validating any treatment for this disease. This is what it means when they say there is no treatment or no cure. So in other words... there is no "empirically supported therapy" that can cure the condition.

The only option for treatment is to attempt treatments not yet validated by science. Whether it's by a quack doctor or a degreed doctor doesn't matter at this point.


A personal anecdote-- I suffered from cluster headaches for about 20 years, starting in high school.

Because of bad emotions and not having much success with traditional psychotherapy and anti-depressants, I started going to primal therapy.

I'm well aware that primal therapy is not considered valid in mainstream psychology. I'm not trying to debate that.

I found my therapy helpful for dealing with my daily emotional swings and negative thoughts and feelings.

Surprisingly, I found that it greatly reduced the number of cluster headaches that I had.

Long story short, I had been suppressing my actual emotions in order to appear okay and not an over-reactive emotional wreck. This was a much deeper and subtle process than "I'm okay"-- it was a subconscious, physio-psychological process involving arresting the subtle motions of my face and neck that normally create expression. This process, which I did often throughout the day, subconsciously, when I thought of something personally painful, would eventually lead up to a cluster headache.

That whole paragraph above is something I figured out on my own, while I was doing the therapy, not something that the therapist presented me with or helped me figure out. But I would not have been able to do it if I had not had a space to enact my emotions, which is what primal therapy is (it's not screaming--or, I should say, not just screaming).

Being in a place where you can actually emote what you are feeling, not just talk about what you feel, is a game-changer when you grew up not being accepted for validated as a child. I can talk about how I feel all I want-- that's what I had to learn to do as a child, going to psychologists. That has no therapeutic or helpful effect for me-- it became just another coping or defense mechanism. I'm completely dissociated from myself when I talk about my feelings. I was never allowed to actually feel.

I still have general physical pain, and get crushing migraines from time to time ( I just started a new medication for that), but thankfully I only have cluster headaches about once every six months. I attribute this entirely to the changes that came about from going to primal therapy.

I know that primal therapy has not been rigorously studied, and is generally considered "debunked" by mainstream psychology. But anyways, it really helped me. I entirely certain that the lessening of cluster headaches to almost gone was not a coincidence, and a result of primal therapy.


Thanks for sharing your experience.

I know several people who are highly-scientifically minded (i.e., masters or PhD qualified in mainstream science disciplines), who've had afflictions like yours, and have resorted to similarly unproven or "debunked" treatments, and have found them effective when nothing else was.

It's a mysterious world.


Slightly off topic, but this just came to mind. If there's a placebo effect for positive results, it stands to reason there's also one that disables known/established remedies.

Point being, not all things will work for people all the time, but there is an element of "unknown" in everyone.


The brain is a complex and powerful organ. I'm not saying in all of these cases that's what it is but the brain has the power of placebo effect. If physical ailments get better because you merely believe you're being treated, there's a chance that there's a treatment out there that the brain responds to for some people for some illness that isn't apparent generally.

If it helps where nothing else does, is that wrong? I bet it doesn't feel wrong to you - you're just glad you're better - and I don't think so either.


Something to think about:

When raising this subject, you need to be clear in what you mean by "placebo".

If you mean that physiological healing happened due to changes in emotions or beliefs, I agree: that's fundamentally how the technique works. It's no different to a sugar pill showing increased recovery rates in a pharmaceutical trial, which can be explained by a sense of optimism and reduced worry/stress due to a treatment being administered.

If you define placebo the way some determined skeptics do in these discussions, to be a false sense of wellbeing with no actual physiological healing [1], then (in my case, for argument's sake) you'd need to account for the measurable physiological improvements that have happened in my body, that didn't happen when I was undertaking other practices over 7+ years, but that I believed/hoped just as strongly would be effective.

[1] https://sciencebasedmedicine.org/is-harnessing-the-power-of-...


I wasn't saying your treatment was placebo at all, in fact. I couldn't possibly make that call.

I'm saying that the brain is powerful enough to heal itself and the body through the placebo effect. If it's that complex, then some treatments not generally accepted will work on some people some of the time above and beyond placebo.


I wasn't saying your treatment was placebo

I am!

Sorry, I'm trying not to be defensive or argumentative, just to make this important point understood: when we are talking about physiological healing brought about by changes in emotions or beliefs, we are most likely talking about the exact same mechanism as what is commonly dismissed as the placebo effect.

The point is that it shouldn't be dismissed; it should be embraced.


I don't think emotional and psychological healing can be dismissed as placebo in physiological healing.

People think there's a great divide between mind and body but if you look at common psychological problems, they very much have a physiological representation.

With anxiety, you're heart rate and blood pressure are effected. You get tension headaches. It can trigger IBS. Hormonal changes in cortisol and adrenaline are present.

Depression drains energy and lowers stress tolerance. Stress has a similar effect as anxiety. It also has very real hormonal changes too. These can have a big impact on physiological state.

Ever been angry and then got a horrible headache? That's psychological state having a very real physiological effect!


I agree with you completely.

I believe wholeheartedly that mind and body are intrinsically linked, and that you can completely heal the body (of a condition like CFS) by healing the mind. It's what I've spent the past 6 years doing.

You're just stuck on the definition of 'placebo' :)


What's the definition of placebo? Was always sure it's used as a control when testing medical treatments in which the patient doesn't know if they are receiving the treatment or not, leading to a genuine change in state from the belief they're in the experimental group, from which clinical significance is measured from as a baseline.

I'm saying that psychological healing can have physiological effects above and beyond placebo due to the very real influence psychological state has on hormones.

If you believe that it's a placebo effect, I'm not sure if it can be called a placebo effect? The whole point of a placebo is that you don't know it's a placebo otherwise it'd have stopped working long ago.

Perhaps the common thread is the belief in its efficacy.


If it were strictly a placebo effect, I would expect any sort of treatment-- anti depresents (I've been on a dozen), talking theraposts, anccupuncture, accupressure, hypnotism, etc. etc. To have worked. If it were just the fact that I was being treated that caused my mind to cure itself, why did all of the previous lengthy and cost-incuring treatments fail?

If "placebo effect" is proffered as a debunking explanation, I'm curious as to the explanation of why this particular sham treatment had the placebo effect, while other sham and real treatments failed to have any effect, real or placebo.


Actually, I'm not saying it's a placebo effect at all. I'm saying that the brain is powerful enough to produce one as an example.

My point is that if the brain has that kind of healing power, it makes sense that other treatments that are not generally accepted will have healing power above and beyond placebo.

I don't doubt these treatments helped you.


IMO it is time for people to start assuming responsibility for their own healing and the numerous psychological / brain-state-altering techniques like meditation are a perfect example.

If anything, the "placebo" sugar pills don't work by themselves; the patients feel better due to feeling calmer that their ailment is being addressed. That by itself proves that the brain has the power to cure a lot of conditions.

I personally have found ways to self-cure with deep relaxation. I have well-repressed and usually well-controlled anxiety to this day. I am usually hyper-active and if I feel a bunch of free joules of energy in my body, I usually quickly expend them; pretty bad habit but I am working on it still. Meditation helps, A LOT. It calms your mind, reduces your CPU frequency -- so to speak -- and by this mechanism, or any other (not sure which one triggers the result) your brain manages to separate the wheat from the chaff and focus on what's really important right now.

A bit off-tangent for sure. My point was that self-healing through altering the brain's state -- be it with meditation, psilocybin, or browsing your comic book collection from when you were a kid -- absolutely works. It serves as seeing the big picture periodically, roughly speaking.


Innerchild Regression Therapy is one that helped me uncover some deep emotional trauma. The difficulty is as you mentioned, people offering these therapies have different experience levels, skills, and styles.


It is really hard, no doubt. Word of mouth is best, but that relies on you already knowing someone unfortunate enough to have had to go through the process themselves.

A reliable disqualifier is anyone who purports to be any kind of heal-everything wizard. All the practitioners who've helped me the most have been well-grounded people, who don't make extravagant claims, and simply work with you to find out what's going on beneath the surface and help you find a better path.

You're welcome to email me and I can help you find someone local if need be.


My experience is similar to yours...CFS following viral infection which never cleared up, but pre-existing stressors were probably more important. Dealing with the stress, allowing my body/brain to heal, then slowly building my life back up again resulted in complete resolution.

If you look at how the brain works, there is quite a lot of evidence pointing towards chronic stress resulting in CFS-like symptoms. I suspect the culprit is the "central governor" region of the brain (which is involved in central fatigue).

http://dx.doi.org/10.3389/fphys.2012.00082


Is there any chance you would be willing to share some information on how you dealt with the stress?

I suffer from a combination of vestibular and CFS symptoms, very similar to yours, and your message (and /u/tomhoward's comment) gave me some hope.

If it's easier, my email address is in my profile.

Thank you so much, it would really mean a lot to me.


Emailed you.


It'd be great to connect if you'd like. Email in profile.


Emailed you.


How much water do you drink day-to-day?

I've recently been discovering I'm chronically super dehydrated, and it turns out you feel like shit all the time when you're dehydrated!

At minimum I now hear you're supposed to drink 64oz/day, or better, your body weight / 2 in oz.

Anyway, this was something very basic that escaped me for years, it's the sort of thing that is so simple nobody pays attention to it, but it has a very big impact on your whole system.

I'm not saying it's your root problem, but if you are dehydrated along with the CFS, fixing that should still improve your day-to-day noticeably.


I definitely improved my blood composition -- proven with periodical tests -- by drinking the proper dosage every day. (I'll spare you the details but certain indices were starting to go outside the safety zones.)

What a local doctor off-handedly told me once was "drink 1 liter per 25kg of body weight a day, make sure to drink the first liter in your first 1-2 waking hours, and stop actively drinking water 3 hours before going to slep -- but from then on just get a few sips if you are thirsty". The last is helping you not wake up to pee 3 times a night and trust me, that advice is well-grounded in reality!

As you say, it's a very basic thing that escapes many of us our entire lives but it definitely helped me fix a problem with a slightly thick blood and arythmia (the latter is not yet fully gone but the remainder is attributed to other factors). It also got me rid of a tense head -- I've felt like my had was between two heavy plates for years, and this is gone for 3-4 years now.


Interesting (although anecdotal of course), thanks for sharing.

From a scientific perspective this should not be a controversial hypothesis. Consider the use of placebos, their use in studies and effect perception can have on the body is well established...

However they are not explained. Getting to the bottom of CFS (if it is in-fact a severe psychological-physiological condition) could reveal some interesting physiological basis for the broader effect.


However they are not explained. Getting to the bottom of CFS (if it is in-fact a severe psychological-physiological condition) could reveal some interesting physiological basis for the broader effect.

:)


A broken arm has a clear cause, but CFS is a symptom and may have many causes.


Indeed. Had a friend with CFS and they finally tracked it down to undiagnosed Lyme disease that she's probably had for years. And that's no more likely than any number of other causes for any specific person with CFS.


Some improvement over 5-6 years seems to be weak to make an argument about one therapy to help imho, since your body heals by itself over time, like in my case.

What are your main symptoms if I may ask?


Some improvement over 5-6 years seems to be weak to make an argument about one therapy to help imho, since your body heals by itself over time, like in my case.

Sure. You might appreciate that I've become accustomed to hearing that. It's OK, I'm happy to elaborate.

In my case, I can observe a steady/accelerating progression of ill-health from as young as 5-10, with some dramatic intensifications of symptoms that coincided with traumatic experiences during adolescence, and continuing worsening of symptoms over 25-30 years, right up until about 4 years ago (I'm now 40) - even after about 6-7 years of trying various mainstream (antidepressants is pretty much all they could offer) and natural treatments (paleo diet, regular cardio exercise and weights training, supplements, detox, yoga, meditation).

For me the pattern is clear: 25-30 of years of worsening of symptoms to a point of being extremely debilitated, the last 6-7 of those years making concerted (indeed, desperate) efforts to get well. Only after I discovered and started implementing subconscious healing practices did the decline start to slow, then turn around. It's now about 3 years since I bottomed out, and my energy is better than it's been since adolescence, and better than most people I know of a similar age.

What are your main symptoms if I may ask?

The symptoms I've had are many of those from the Phoenix Rising CFS/ME Symptoms page [1]:

- ‘Post-exertional fatigue/malaise’

- ‘Brain fog’

- ‘Wired But Tired fatigue’

- Nervous System Symptoms: low blood pressure, dizziness, headaches, breathing dysregulation (short breath, asthma), digestive issues

- Hormonal Type Symptoms: low body temperature, anxiety/panic attacks, sugar/carb/alcohol intolerance

- Immune System Symptoms: tender/swollen lymph nodes, muscle and joint pains, sensitivities to foods, chemicals.

[1] http://phoenixrising.me/mecfs-basics/chronic-fatigue-syndrom...


I should add, and indeed emphasise: it's not "one therapy"; it's various different therapies, practices, exercises, etc, all with the objective of relieving trauma and de-activating chronically active stress/fear/anxiety mechanisms in the body.


Hm interesting. About your post exertional malaise, how much can you do until you feel malaise for several days or weeks?


I don't get post-exertional malaise now at all. I regularly do high-intensity spin cycling ("Soul-cycle" style, which activates the adrenals very significantly) and don't get malaise. I've also done plenty of weights training and jogging (up to 10km/6mi), over the past year, and again, post-exertional malaise is just never an issue.

Up until about 3 years ago, a solid weight training session (squat/bench/deadlift) would have me overstimulated and unable to sleep that night, then crashing for 7-10 days.


Oh, then it really seems to work.

When you said "crashing for 7-10 day", what does that mean. Did you have a lot of pain and fatigue unable to get out of bed for a whole week and were you completely recovered after that week again?


What remarkable timing, this post is. Struggling with the same exact things and have tried similar remedies in the past with little effect. I'm now reading (literally was reading this last night)"the body keeps the score" by Bessel van Der kolk MD, and its quite a significant body of scientific evidence about how pychological trauma and post traumatic stress disorder is the cause of all kinds of maladies that are physiological in nature. Will be pming shortly!


Right or wrong, this appears to be a scientifically framed way of arguing "the problem's in your mind"... dealing with subconscious emotional issues, etc..

Reading between the lines it sounds like you're saying it's acedia, perhaps an extreme form. Acedia appears to be normally distributed in the population, so perhaps those who label it CFS are a couple deviations from the mean. Sure I've felt acedia too after years of working hard at a company I didn't care about with a stressful, long commute. Quitting, traveling for 3 months, exercise, indulging my neglected dating life, and ultimately a career change into a field I cared more about have kept me feeling active and motivated. If I hadn't made those dramatic changes though I very well might have messed myself up long term and developed a more extreme form of acedia.


Can you tell us more about what was holding you back and what worked for you?


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.


Thank you for posting. It takes considerable courage to say even as much as you've said, in this forum.

It sounds like you don't have the same form of CFS that I do. I have the sudden-onset type: one week I categorically didn't have it, then I had what seemed like an ordinary flu-like viral illness, not noticeably different from others I had had, but then a couple of weeks later, when I tried to resume my previous level of physical activity (running and biking), I was hit with the brain fog and post-exertional malaise -- even a brisk walk was enough to bring it on.

I was under considerable emotional stress at the time, embroiled in a serious dispute with a family member, and between jobs. I'm sure that all that stress had something to do with my contracting the CFS. That's not to say I think it was just stress; rather, the stress weakened me in some way that allowed this thing, whatever it is (EBV?), to get a foothold. As you say, the body is not separate from the mind.

My doctor was sympathetic, and put me on an antiviral drug, valacyclovir, for a few years. It helped some, I believe, but wasn't a complete cure. I have also pursued some alternative approaches, primarily breathwork, which I still do occasionally. My symptoms have always been a lot milder than those some experience -- I've never been bedridden -- and they're now even milder. It's to the point that as long as I'm careful not to go too fast on the bicycle I can function as if I didn't have the disease at all, but if I overexert myself I am rudely reminded that it isn't completely gone.

Anyway, thanks again for your story. I still find it heartening and inspiring even though it sounds like your illness had a different cause than mine. I wish you continued healing.


"I don't need to play that game any more" - This is so true of many facets of our lives!



I'm dying to know the specific techniques and incredibly frustrated you haven't listed anything specific.

The people demand answers!


You can search through my comment history (particularly around 20 months ago, but other points in time too) for more specifics, and also to see why I'm reluctant to repeat them now.

And you can email me for more up-to-date info and to be involved in any ongoing discussions that may develop.


Is there anyway I could contact you to learn a little more about what kind of subconscious healing practices you have used? I am in dire need of them. My life is... well... crumbling around me. :)


You're very welcome to contact me - several other people have been in touch since this post, and there may be an opportunity for an ongoing discussion.

My email is in my profile.


Have you done blood testing for food sensitivities, where they test 120+ things? And nothing in particular lead me to ask this next question, however do you remember having any ear infections as a child?


Have you done blood testing for food sensitivities, where they test 120+ things?

Not that one - it never seemed top priority (given that I had a very limited budget due to being ill and unable to derive a good income, until recently). I just learned what foods/chemicals should be avoided. For me it's really just dust/dustmite, mould, some household chemicals, but that's about it. At certain points through the healing journey I've felt better when I've avoided things like grains, gluten, dairy, sugar, caffeine, but all those things are becoming less of an issue these days.

do you remember having any ear infections as a child?

Not really (I did have asthma from about 9) but I've had tinnitus (ringing ears) since about 13, which is sometimes said to be linked to inflammation/oxidation/chronic infections. That's one thing that hasn't resolved yet but I'm hopeful that it will eventually, and if/when it does, it will be interesting to observe any correlations with blood indicators of inflammation/oxidation.


I had been doing an elimination diet for a long time to figure out a lot of sensitivities. Potato may have been the most difficult for me to figure out as potato itself wouldn't bother me, but it would inflame my whole GI tract and was accumulative - so when I ate other food, no matter the food, it would irritate me.

It was an audiologist who first told me to stop eating wheat, which helped with a lot of things - prior that I didn't even realize I was allergic to egg whites because the wheat numbed me so much (there's an opiate in it that greatly affects some people).

The food sensitivity blood work I only did less than 2 years ago was quite revealing as well. Some foods that showed up I knew were an issue, other ones I didn't realize. When I cut them all out I felt much better. Now when I eat a small amount of any of those foods I can notice how it makes me feel bad quite easily; I was conditioned to feeling a certain way (now that I would describe as shitty) and reducing that agitation load long enough has let me feel the difference between a healthy baseline and a more agitated one. I would highly recommend you go to a naturopath who can send the test in for you. They just prick your finger and fill 5 little circles on a business card-sized card with your blood.

Re: Tinnitus - Auditory Integration Training (http://www.aitinstitute.org) can help with that as well as many other things. How AIT helps is with a similar system not well-understood or acknowledged like with what you posted about the complex relationship between deep hidden emotions (emotional wounds) and other symptoms or labels such as CFS.

I wrote a reply where I suggested people look into Auditory Integration Training for either themselves or their children who they said had certain autistic characteristics. Here's the thread for that: https://news.ycombinator.com/item?id=13657725 - and in particular someone asked to hear about my own experience with it, to which I replied here: https://news.ycombinator.com/item?id=13657973


Magnesium might help improve the tinnitus. It probably won't entirely stop it, but anecdotal reports suggest it may help. If you are magnesium deficient, you are probably also calcium deficient. You may also need vitamins D and K to help properly absorb the calcium.


> do you remember having any ear infections as a child?

I had a lot of them. Curious what your connection is.


I completely understand what they're angling at.

Any pattern of frequent infections (most commonly in the ears, sinuses, throat, chest or digestive system) indicates an impaired immune system. Early signs of this in childhood can be extrapolated to explain more serious conditions an adulthood.

For me it wasn't the ears, but it was the chest, sinuses and digestive system, from at least as young as 9.


"... chest, sinuses and digestive system ..."

This makes me feel like food sensitivities bloodwork may be a really good thing for you to explore and see the results of, and perhaps learning about how foods can impact you, e.g. soy, bananas, and dairy are the 3 highest mucous producing foods you can eat - will cause your chest, sinuses, ears, etc. to generate a lot of mucous which causes its own problems.


Curious why the downvote if person who did it cares to spend the time explaining themselves.


I really need to do a full writeup on my understanding of my experiences, especially relating to this question I ask people.

As an interesting side note, wheat is connected to childhood ear infections.

I wrote a reply where I suggested people look into Auditory Integration Training for either themselves or their children who they said had certain autistic characteristics. Here's the thread for that: https://news.ycombinator.com/item?id=13657725 - and in particular someone asked to hear about my own experience with it, to which I replied here: https://news.ycombinator.com/item?id=13657973


Hi Tom,

Thanks for sharing your experience. Are there any books which you would recommend? I have my e-mail on my profile, if you find time, I would be really interested in any books/techniques which helped you.

Thanks!


> 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.

Have you considered Ibogaine?


Have you been following any of the research on gut bacteria? I'd be curious to hear your thoughts/feelings as to how that might also tie into things, or not.


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.


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.


There's a fairly well-known study (I could find a ref if wasn't too lazy) showing that people in retirement homes who were made responsible for the care of a potted plant, lived longer on average than a control group who were given a potted plant but told the staff would take care of it. Just having a responsibility keeps people alive.


Perhaps they don't feel better because of the stress, but in spite of it; finishing chores means that you are useful to your community, and this certainly feels better than feeling useless and waiting for death to come.


As a bit of a person that enjoys quit times. Jump into a crowd every now and again. Just to keep the blood running.


Culture relishes how much stress one can handle. Not humans. It's a learned behavior.


>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).


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.


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

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

Another researcher present at the conference also found abnormally low metabolism in T cells of patients.


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

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.


> Only one group has published their findings here http://insight.jci.org/articles/view/89376

that is a very interesting paper, ty for linking it here.


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.


Not really correct.

CFS is a term for mitchondrial dysfunction, which causes a range of symptoms and where neither cause nor therapy is clear.


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).


"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/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/s1288...


The absence of mitochondrial DNA mutations known to be associated with disease does not mean it's not a mitochondrial disease (in the sense that mitochondria are abnormal in some way and relevant to the disease).

Simply put, it's not a genetic mitochondrial disease.

There is a fair amount of evidence that mitochondrial function is abnormal in CFS.

See for example this study http://www.pnas.org/content/early/2016/08/24/1607571113.long


Thanks, I did not intend to indicate it was not a mitochondrial disease or related to mitochondrial function, just that it's not the 'final solution' other posters seem to have implied. It would seem likely that from further research that CFS will be subdivided into smaller groups, with some having clinical tests and causes that have been established, others still eluding a resolution.


There was another Chronic Fatigue Syndrome post a few days ago that has some interesting comment threads:

https://news.ycombinator.com/item?id=14896255

(Not a dupe, just a different article)


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.


The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy

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.


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.


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.


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


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-fa...


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.


> 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.


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/


indeed, 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-fee...


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?


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


> antibiotics cause mitochondrial dysfunction (particularly bacteriocidal antibiotics)

You are very assertive, but this proves that you don't know what you are talking about. Antibiotics are all "bacteriocidal".

Beside, saying the mitochondries are responsible is like saying that the arm is responsible of an incapacity to move an arm. It could be due to a neurological, muscular or squeletical root cause. Mitochondries are the factories of ATP but there are many other factors in play.

A cause could be a lack of oxygen due to nocturnal apnea, etc. Lack of vitamins, lack of iron and/or red cells, etc. etc.


I happen to share your skepticism about a mitochondrial origin for this syndrome, though I am not familiar with the research (would appreciate a review on the topic - I saw one linked earlier in the comments from BMC Genetics that seemed to conclude that mitochondria are not involved).

> You are very assertive, but this proves that you don't know what you are talking about. Antibiotics are all "bacteriocidal".

I also found this confusing when I first learned about it, but some antibiotics work by directly killing organisms (i.e., are bacteriocidal) whereas others simply block the ability of bacteria to grow (i.e., are bacteriostatic). [1]

There are a few clinical cases where one would avoid bacteriocidal antibiotics, as the internal contents of a bacterium could further worsen a patient's symptoms.

1. By no means an authoritative reference, just a cool demonstration of this concept: https://www.ncbi.nlm.nih.gov/pubmed/24284484


Certainly a possibility - but stress on mitochondria is almost inevitable whatever the cause, so the question remains as to whether this is upstream or downstream in the chain of causation, or a necessary but not sufficient condition that might not be the cause.


>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.


> 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?...


Yeah, I need to clarify. Proven by in vitro only experiments:

https://www.indiegogo.com/projects/dracos-may-be-effective-a...



CFS is a controversial diagnosis.


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!


The lack of an objective test is more problematic tan the lack of a cure.


There was very recently an article about a maybe-upcoming test: https://news.ycombinator.com/item?id=14896255


There are tests available, see: http://drmyhill.co.uk/wiki/Mitochondrial_Function_Profile

(and more on that page)


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.


Any syndrome, almost by definition, isn't a highly meaningful diagnosis, as it's diagnosed by symptoms and exclusion. Once the mechanism is better understood, it'll become a disease and not a syndrome, but most likely it will split into multiple diseases (and even then many people will be left out, untreated).

Imagine having Crohn's disease the year before it (or UC) was 'discovered.' You had a debilitating disease, but you were just told you had "really bad irritable bowel syndrome". Certain doctors would tell you that it was all in your head. Or at the least, they would be wholly unhelpful. The general public would be much worse.

In my extensive experience, doctors are really, very much just people. Actually, they're often less helpful than regular people because they have extreme constraints on their time and against thinking for themselves (example of the latter: a close friend of mine was hospitalized for attempting suicide and they wouldn't give him benzodiazepines because of the __risk of addiction__).

Sorry for the rant...


Re: doctors, I'd also like to point out that, while the goal of medicine as a whole is to prevent death & suffering, the goal of doctors is to prevent death & suffering from treatable causes.

Individual doctors do better or worse at dealing with patients who fall off the map of known problems and solutions - from accusing patients of lying about symptoms to referring them to medical researchers to just explaining that there's not much they can do but keep an eye on the situation - but the most important thing, medically, is for the doctor to make sure that your symptoms don't have a known, treatable cause.

Dying or suffering for years from a mysterious condition sucks; dying or suffering for years from a well-known condition that just went undiagnosed sucks worse.


I see what you're implying with your UC/Crohn's reference, but it actually underscores why CFS is so hard of a diagnosis.

In UC/Crohn's, patients presented with recurrent bouts of bloody diarrhea in the absence of infectious symptoms, with possible associations of malabsorption, fistulas, and colon cancer. These are pretty straightforward things to diagnose and clearly represent pathology, irrespective of whether we can assign a name to them.

CFS includes symptoms that don't fall so far from the range of 'normal' human experiences, thus it's much harder to define syndromically.

IBS is an interesting choice for comparison, as it, like CFS, seems to be in part a psychiatric diagnosis at least as it relates to stress. Nothwithstanding, there are clear associations for IBS - chronic abnormal bowel movements and abdominal pain, neither of which is 'normal'.


I'm pretty sure your friend didn't get benzos because they are useful for committing suicide and generally not prescribed to people who may use them for that purpose.


kind of similar to fibromyalgia, also very difficult to diagnose with accuracy.


Has anyone seen how this interacts with the ketogenic diet?


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 :)


Hmm, I see. Thanks for sharing.


fuel, air, spark, compression.

People are so much harder... :(


We are also engineered machines, just with 1000x more variables. :D


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.


What do the flight data mostly consist of?



"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..."


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.


You seem to have tried everything - have you also tried what Dr Kruse suggests? He is very pitchy and I doubt that everything he says is true, but his theory about natural sunlight and DHA sounds reasonable. Basically he says, get as much DHA as you can, ideally from fresh seafood; and get as much natural sunlight with proper retina exposure, or get a UV lamp (like Osram Vitalux 300w) and a near infrared bulb, and avoid LEDs and energy saving CFLs as much as possible. He claims that electron transport in the body is impaired if either DHA or retinal UV exposure is absent. I've noticed a lot of energy improvement since trying that, but have to take it further to be sure. Some people at phoenixrising have started intranasal infrared/laser therapy and reported great improvements, though those devices cost up to 1k (I think the mechanism is that near infrared helps repair mitochondrial membranes in the brain, which an intranasal laser can actually penetrate).


Note before doing this that antihistamines (with one exception) inhibit tanning. I presume this includes H2 blockers such as zantac/ranitidine

"histamine induces melanogenesis of human cultured melanocytes by protein kinase A activation via H2 receptors."

http://www.sciencedirect.com/science/article/pii/S0022202X15...

Another reason sunlight+tan might be helpful, is that your tan deals fights heavy metal toxicity:

Recent research suggests that melanin may serve a protective role other than photoprotection.[36] Melanin is able to effectively ligate metal ions through its carboxylate and phenolic hydroxyl groups, in many cases much more efficiently than the powerful chelating ligand ethylenediaminetetraacetate (EDTA). Thus, it may serve to sequester potentially toxic metal ions, protecting the rest of the cell. https://en.wikipedia.org/wiki/Melanin


That sounds horrible. Well done and best wishes on the road to recovery.

Have you tried meditation? Try to focus on all of the good things during the day at the end of the day, for a sustained period, regularly, for a few weeks. Celebrate small victories and slow progress. (There are other techniques, too.)

Also, change of environment can often be a positive trigger: if you can afford it go someplace cheap for a few months with an audible beach and sunlight, different food, etc. Somewhere totally new and alien, preferably with a new language... and strictly reduce screen time to a minimum.


Yes, doing all the things to celebrate small victories, shaving my beard etc. to get at least some dopamin during the day.

Changed environent several times, and also meditation didn't do anything though.


>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.

My own CFS certainly did have an imbalance in neurotransmitters when it was severe, and other severe patients also seem to have this (e.g. Whitney Dafoe talks about feelings of what sounds like anxiety and depression when he has his CFS attacks). I can't think of what else could cause this other than an imbalance in neurotransmitters (or something similar).

I think the problem is just the general misunderstanding (both from patients and doctors) about how the brain actually reacts to chronic stress. Even if you love what you're doing, if you push yourself too hard your body will eventually break. An example:

https://cfsunravelled.com/bedbound-with-mecfs-fibromyalgia-o...

Another example is overtraining: if you push your body too hard physically (e.g. by running marathons every day), you can end up with a CFS-like illness with depression, extreme fatigue, immune dysfunction, etc.:

https://www.outsideonline.com/1986361/running-empty

The brain doesn't have a neat distinction between physical and psychological like we do. There seems to be a part of the brain which integrates physical and psychological stresses, which then causes depression and fatigue if it appears that the long-term stress is not beneficial:

http://dx.doi.org/10.3389/fphys.2012.00082

http://dx.doi.org/10.1037/0021-9010.86.3.499

http://dx.doi.org/10.1016/j.psyneuen.2005.04.006

http://dx.doi.org/10.1037/0033-2909.133.1.25

http://dx.doi.org/10.1016/j.brainresrev.2008.07.001


Yes, depression as a consequence of losing everything in your life an being bedbound while no one can help you does make sense.

However, this is only after CFS strikes, it is not the cause for CFS.

There needs to be a clear distinction that CFS does not have psychological cause and the current research points that way as well.


>However, this is only after CFS strikes, it is not the cause for CFS.

In my own case (as with Whitney), the anxiety/depression was definitely not a psychological consequence of having an illness, it was a fundamental part of the illness itself, and would appear with no warning along with the other symptoms (not after them). I can't speak for anyone else, that was just my experience, and it seems to mirror Whitney's illness. (Although mine never became as severe as his).

However depression is not a "cause" for CFS (or anything else), it is just another symptom.

>There needs to be a clear distinction that CFS does not have psychological cause and the current research points that way as well.

I think you have a very simplistic notion of what "psychological" means. Read my parent comment again...


Indeed, there are a lot of ways mitochondrial dysfunction could lead to depression on a physical level - thyroid function suppression, HPA axis disorder (leading again to thyroid suppression), various electrolyte imbalances caused by decreased intestinal uptake (eg magnesium deficiency can cause "untreatable" depression), microbiome shifts due to decreased peristalsis leading to decreased serotonin levels...


True, but it seems unlikely that CFS could be caused by the mitochondria or intestinal update suddenly screwing up overnight. A neuropsychiatric disorder caused by chronic stress seems more plausible, with both the fatigue and depression being generated in the brain itself.


Many people describe that their CFS started right after coming down with a virus, so a malfunctioning immune system seems a cofactor. Impaired T cells have been hypothesized..


If you look at the research (e.g. http://www.sciencedirect.com/science/article/pii/S0022395696...) most people report a viral infection and stressful events (more people report stress than virus).

Bear in mind that infections are physiologically stressful (http://dx.doi.org/10.1089/vim.2005.18.41) in that they activate the HPA axis in the same way that a psychological stressor does.

>a malfunctioning immune system seems a cofactor. Impaired T cells have been hypothesized..

But there has to be a reason for that suddenly happening. And it doesn't explain patients who didn't have a viral infection at onset, or those who don't have ongoing EBV (or other) infections...


> CFS is not an imbalance of neuro-transmitters in the brain, which it is the case for all psychological illnesses.

Most scientists and physicians no longer think most mental illnesses are caused by "imbalances in neurotransmitters."


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


Tap the Reader icon in the address bar and you’ll be able to read it fine.


Thank you. Didn't thought of that. Can't delete my question anymore. I apologize for the noise.


Wasn't noise. You called out poor design.


Maybe try a different browser, works fine with Firefox for me.


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!


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.


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.


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."


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.


>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)?


The problem with those cures might be that they modify one measurable imbalance but there may be many more and that imbalance might only be a symptom of something else. Also, people differ in the ways and rates they process chemicals. Using those poorly understood pills is akin to hitting it with a hammer and hoping it starts working again.


I agree with you - from a theoretical perspective, it seems pretty crazy to be taking pills that alter the brain chemistry when we don't fully understand the effects those changes might have.

But the strange fact is that SSRI therapy does seem to help with depression in many people, just as lithium seems to help with mood even though we don't completely understand why.

With the example of serotonin, even though the SSRI effects serotonin levels almost immediately, it can take several weeks for depressive symptoms to improve. Therefore it is unlikely that inhibiting serotonin transport alone accounts for the anti-depressive effect. It has more recently been theorised that the strong anti-inflammatory effect of SSRIs may be involved, as depression is increasingly known to be related to chronic inflammation.

Lastly I'm pretty skeptical about "imbalances" altogether (though I took it for granted at the time). For example, when I and others have been prescribed SSRIs, there have generally been no medical tests given first which might detect or confirm any such imbalance. In fact I'm not even sure such a test is possible. Instead, they give the pills out solely on the basis of a personal report from the patient, which the physician interprets to indicate depression.


See, I don't know how meaningful the chemical not psychological distinction is. I mean doesn't every thing we feel have chemical components?


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.


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.


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.


Interesting you mention the exercise part.

Exercise didn't cause pain for me, but was mentally and physically draining to the point that I just didn't do it. It wasn't until I radically modified my diet (hello Paleo) until that slowly lifted and now I'm at least mostly functional there. See my story (somewhere in my comments history on here) about when I used to weigh 340 pounds and then via changing what I ate, not how much, I hit 184, and exercise suddenly wasn't this insanely fatiguing bullshit. Notice: being overweight isn't what caused it, I wasn't nearly that fat when I was a kid, and you couldn't get me to do shit when I was a kid.

I don't disagree with what I said being a form mild depression, but it doesn't really fit the definition of it. Antidepressants are also a really bad way of treating depression and ignore your brain's own mechanisms to alleviate depression.

Problem is, it seems CFS and depression go hand in hand.


The difficulty of dealing with CFS might cause depression, but apart from that depression does not have to do anything with CFS.

Anti-depressant and psycho-therapy are the two best treatments for depression though, everything else is just experimental.

Why do you think that mild depression does not fit the symptoms? In its early stages, you only have lack of drive and 2 more of its 7 side symptoms. (these are the diagnosis criteria for mild depression, look it up)


> I know that science is now saying that "decision fatigue" doesn't exist

Do you have any references? I'm only aware of studies falsifying the model of it as a consequence of "ego depletion" or linking it specifically to glucose, not debunking the phenomenon altogether.


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.


He's being fed intravenously and can't speak. Read the article.


That's... Not how any of that works


This is just another version of the ignorant "depression == sadness" meme. Depression and CFS aren't exactly the same thing either.


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.




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