8 ms·

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 see

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.
pasta 9y ago
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.
- agumonkey 9y ago
  I have a similar point of view about meditation. It shuts down inputs to this queue as much as possible.
  - tedmiston 9y ago
    I've had a similar experience where I'd describe meditation as a high priority filter for the messages in my brain's queue.
    - TheSpiceIsLife 9y ago
      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.
wellboy 9y ago
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?
- tomhoward 9y ago
  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-syndrome-mecfs-symptoms-2 http://phoenixrising.me/mecfs-basics/chronic-fatigue-syndrom...
  - tomhoward 9y ago
    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.
Retric 9y ago
A broken arm has a clear cause, but CFS is a symptom and may have many causes.
- tyingq 9y ago
  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.
tomxor 9y ago
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.
- tomhoward 9y ago
  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. :)
andreasklinger 9y ago
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?
- tomhoward 9y ago
  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.
- loceng 9y ago
  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.
- viwalia 9y ago
  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.
loceng 9y ago
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?
- tomhoward 9y ago
  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.
  - loceng 9y ago
    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 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 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 https://news.ycombinator.com/item?id=13657973
zuzuleinen 9y ago
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!
cpncrunch 9y ago
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 http://dx.doi.org/10.3389/fphys.2012.00082
- tomhoward 9y ago
  It'd be great to connect if you'd like. Email in profile.
  - cpncrunch 9y ago
    Emailed you.
- 0bsidian 9y ago
  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.
  - cpncrunch 9y ago
    Emailed you.
sliverstorm 9y ago
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.
- pdimitar 9y ago
  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.
orthoganol 9y ago
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.
takethecake 9y ago
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!
chiefalchemist 9y ago
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.
eip 9y ago
> 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?

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.

pasta 9y ago

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.

agumonkey 9y ago
I have a similar point of view about meditation. It shuts down inputs to this queue as much as possible.
- tedmiston 9y ago
  I've had a similar experience where I'd describe meditation as a high priority filter for the messages in my brain's queue.
  - TheSpiceIsLife 9y ago
    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.

wellboy 9y ago

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?

tomhoward 9y ago
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-syndrome-mecfs-symptoms-2 http://phoenixrising.me/mecfs-basics/chronic-fatigue-syndrom...
- tomhoward 9y ago
  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.

Retric 9y ago

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

tyingq 9y ago
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.

tomxor 9y ago

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.

tomhoward 9y ago
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. :)

andreasklinger 9y ago

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?

tomhoward 9y ago
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.
loceng 9y ago
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.
viwalia 9y ago
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.

loceng 9y ago

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?

tomhoward 9y ago
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.
- loceng 9y ago
  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 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 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 https://news.ycombinator.com/item?id=13657973

zuzuleinen 9y ago

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!

cpncrunch 9y ago

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

tomhoward 9y ago
It'd be great to connect if you'd like. Email in profile.
- cpncrunch 9y ago
  Emailed you.
0bsidian 9y ago
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.
- cpncrunch 9y ago
  Emailed you.

sliverstorm 9y ago

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.

pdimitar 9y ago
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.

orthoganol 9y ago

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.

takethecake 9y ago

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!

chiefalchemist 9y ago

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.

eip 9y ago

> 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?