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

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.

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...

:)

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.

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.

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.

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 a lot of them. Curious what your connection is.

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.

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.

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).

"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/

Why would you still be researching if it's 100% proven? Maybe the claim that it's proven is a lie?...

> 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

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'.

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.

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

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.

"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

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.

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 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)?

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."