Joseph Cohen - Self hacked

[Hip]

It's what I call "the Silicon Valley" mindset.

I think it is more of a contemporary idea to use nootropic drugs and supplements to boost mental performance in order to become a kind of turbo-charged superhuman. That I suspect is a direct result of the increasingly competitive capitalist environment.

However, when I first started experimenting with improving my health and mind 25 years ago, when I was in my mid-twenties, I was more interested in other things. Like just being happier.

At that time, one of the things I wanted to figure out was why I would often suddenly be hit with a bout of depression that would last half a day, and then clear up. It took a lot of exploration and experimentation, but eventually, partly just by luck, I read a book on food intolerance (a very new thing then), and the idea that a common foodstuff in your diet could be screwing up your body.

After performing a proper rigorous three-month exclusion diet according to the instructions in the book, amazingly, I discovered that I had a food intolerance to gluten, and it was this that was causing my bouts of depression.

Once I cut out gluten (difficult in those days, because gluten intolerance was generally unheard of by the general public, supermarkets and restaurants), my life was significantly improved, and all the effort I put into finding the cause of my depression paid off.


Now, I expect even today, there are probably those suffering unnecessarily from gluten-induced depression, but either because they were not lucky enough to happen upon a book or website about food intolerance, or they did, but did not take it any further, they have not solved their problem. I find that sad, and I wish I could persuade such people to explore their body and mind health problems further, but I know that either you are a type who is interested in such exploration, or you are not.

I can give you several other examples in my own life where this body and mind health exploration led to further discoveries and improvements in my personal mind and body health, and as a result put me in much better stead in life. Not in this turbo-charged sense, but more as just a well-rounded and happier human being.


Of course, after all that effort, I caught a cocksucker of a virus — sorry a Coxsackie virus! — which then plunged me into ME/CFS and some nasty mental symptoms. But that's the snakes and ladders of life.

 

[Paralee]

Either way you decide which approach to take, when you're getting old and can see your years of life left declining fast, to me it's research what you can, try a very little amount, and cross your fingers. If it didn't work, have a plan B and hopefully a plan C in the background.

 

[BurnA]

Presumably then, you think that all the people on this forum who systematically try out supplements and drugs, and who do occasional find meds that are helpful for their ME/CFS (as I have), and report this on the forum, are lying, or are experiencing a chronic placebo effect?

And you think that the studies that have found certain drugs or supplements to have beneficial effects for ME/CFS are wrong?

And you think the internationally known ME/CFS doctors who prescribe these drugs or supplements to ME/CFS patients (eg: Valcyte, oxymatrine) are fraudulent?

You are strecthing things too far. Not good.

You use inciteful words like lying and fraudulent when this is completely unnecessary.

For me, I actually enjoy the process of reading and researching a treatment, and testing it out. And if it does have good effects, I enjoy further experimenting with it, to optimizing the treatment. I learn a lot biochemistry while doing this, and I find it really interesting.

I think it's great that you do this and I admire you for it and I hope you and others can benefit.

But I appreciate that if all that sounds like a boring activity to you, it's not so much being lackadaisical, it's just that it does not float your boat.

It's not that I find it boring or that it doesn't float my boat, I just don't have the time or energy to commit to it and given that I percieve the chances of success are limited I have abstained from these activities. It's a calculated decision that I might revisit over time, it may not be the right decisison but thats where I am right now.

 

[Hip]

You are strecthing things too far. Not good.

You use inciteful words like lying and fraudulent when this is completely unnecessary.

Perhaps, but when you suggested that there is no evidence for effective ME/CFS treatments, that's also stretching things a bit.

What that the "no evidence" phrase means in practice to doctors is that medicine has not got a one-size-fits-all treatment that works for ME/CFS, and doctors (at least NHS doctors) generally have not got the time or patience to tinker with the many speculative ME/CFS treatments that might possibly be of help, so therefore they give you nothing.

Yet I would think most patients on this forum will have at least one drug or supplement they have found that makes a significant improvement to one or more of their symptoms.


Of course we want research to continue, to try to find solid, effective treatments that, in large scale clinical trials, substantially help most ME/CFS patients. Like hopefully rituximab. Then we will be able to say there is evidence for an effective treatment.

 

[BurnA]

Perhaps, but when you suggested that there is no evidence for effective ME/CFS treatments, that's also stretching things a bit.

Only I said :

there is no scientific evidence for most of the stuff touted anecdotally as curative.

Yet I would think most patients on this forum will have at least one drug or supplement they have found that makes a significant improvement to one or more of their symptoms.

I think that's wonderful and I wish they had more than one, and whether it is scientifically proven or not makes no difference as long as it works for them.

 

[Hip]

@BurnA
What I would like to see is the UK NHS set up a standard set of drugs and possibly some supplements that they systematically try out on ME/CFS patients, to see which yield benefits. These drugs could be selected from the drugs routinely used by specialist ME/CFS doctors. They could include low-dose naltrexone, vitamin B12 injections, oxymatrine, Valcyte, low dose amantadine, modafinil, piracetam, melatonin for sleep, etc.

That will almost certainly help a subset of ME/CFS patients improve their health; but perhaps just as importantly, it would help get these wayward UK doctors thinking in terms of ME/CFS being a biological disease, and not a psychologically-caused one.

 

[barbc56]

ut of the people that I know — both healthy people with minor ailments, and those with serious chronic health problems — it is clear that some people by character do take on the challenge of trying to improve their health, by tinkering and experimenting with supplements, by trying out drugs, by researching their health issues, and going to see several different medical professionals to get as many medical opinions, and sometimes prescriptions, as they can.

Other people by character show little interest in doing this sort of thing. At best, they will go to their doctor for a diagnosis and some prescribed treatment, but have no drive or curiosity to take things any further than that.

I find your definition of "character" off putting. Again this smacks of the disrespect we have received as patients.

I think wording is important when expressing one's self. People have different perspectives about the world and with a few exceptions such as issues that have to do with moral imparatives, I have no problem with another's opinion being different and that includes using supplements.

But I also have a right to disagree with the facts but doing it without questioning another's character or disrespecting the person.

I say good for you if this helps you. But don't expect everyone to agree or assume that they are behaving in a certain way because of motives you have attributed to them. Maybe you didn't mean to be disrespectful. Plus I think everyone here has slipped up and done this, sometimes without meaning to. Especially, when you basically feel like shit. We are only human.

Also, let me say, from reading other posts of yours, you are not disrespectful. I am just speaking of this thread.

 

[Hip]

I find your definition of "character" off putting. Again this smacks of the disrespect we have received as patients.

I don't see how there is any disrespect in talking about character. Character is usually an interesting topic of conversation. For example, I know from your many posts that you are quite cautious and conservative. Me, I have touch of mad scientist, and am an experimental calculated risk taker. But none of that is disrespectful, it's just traits we have.

 

[barbc56]

I don't see how there is any disrespect in talking about character. Character is usually an interesting topic of conversation. For example, I know from your many posts that you are quite cautious and conservative. Me, I have touch of mad scientist, and am an experimental calculated risk taker. But none of that is disrespectful, it's just traits we have.

My bold.

No you don't know.

I really hadn't planned to post more but feel I need to as you are ascribing motives/character to me which in this case are incorrect.

If you knew me, and you don't other than my online persona, I am not by any means conservative, cautious and am very much a risk taker. But so what if I wasn't? Would that make me devoid of any positive traits? I don't think so.

I could tell you my background and what has been influential in my life to explain who I am, which I actually did in lengthy detail when I first wrote this. But then I thought, why? I don't have to explain or defend myself to anyone who I am, unless I am asked and chose to share it.

I also have a thick skin and am not easily goaded to engage in an argument.

What I'm saying is I am what I am so take it or leave it.

Please do not make assumptions about my personality because of my style of writing. It's rude and judgemental and not productive to this conversation.

Thank you.

 

[Hip]

If you knew me, and you don't other than my online persona, I am not by any means conservative, cautious and am very much a risk taker. But so what if I wasn't? Would that make me devoid of any positive traits? I don't think so.

I am not in any way suggesting that you are devoid of positive traits. Nothing of the sort. If anything, I was being self-deprecating. You have taken my comparative character sketch, which was just given as an off-the-cuff example, and misconstrued that as being rude and judgemental.

And you said earlier that I was disrespectful when I was talking about the concept of people's character, and how that relates to the way they pursue health treatments. Again, I think that's misconstruing what was said.

And before that, you and others here misconstrued what @Sherpa said in this post. He was simply taking about whether people like to play an active or passive role in trying to improve their health, but that got misconstrued as "if you don't get better it's the patient's fault".

Seems to be a lot of misconstruing going on.

 

[PeterPositive]

Hey... I use nootropics too: methyl-cobalamin, methyl-folate, ashwagandha, zinc, rhodiola... it doesn't make me a superhuman achiever with an hyper-brain but I definitely feel less like a hamster and a little more like a human being... or a shadow of it

 

[Paralee]

@PeterPositive , I can't take any of those except a little zinc, maybe if I combined them all together they wouldn't put me on the floor? You never know. (GRIN)

 

[Avengers26]

@Sherpa I just read this post by you -
http://forums.phoenixrising.me/index.php?threads/joseph-cohen-self-hacked.34904/page-2#post-744548

Can you describe briefly some of the supplements or techniques [you mentioned gadgets] which you have found helpful? If you have done it somewhere else, please give me a link. The Self-Hacked guy seems to have helped your health improve significantly & I am open to trying something that might be of benefit to me.
Thank you.

 

[PeterPositive]

@PeterPositive , I can't take any of those except a little zinc, maybe if I combined them all together they wouldn't put me on the floor? You never know. (GRIN)

Dosage could be the key. With all those I've started super low. Zinc used to bother my stomach even at 5mg! So I went lower at 2-3mg every other day and slowly waited for my body to adapt. Often times it works. Same with B12 and folate.

Good luck

 

[Sherpa]

@Avengers26

• I strictly followed the Lectin Avoidance Diet. I bought an Instant Pot pressure cooker and a juicer to get me lots of high quality protiens and non-inflammatory plant foods with minimal prep time. Some (but not all) of my inflammation and brain fog was caused my lectin sensitivity and food intolerances. It's very hard to "go wrong" and feel worse from something you are eating on this diet.
• I tried to determine if my immune system was Th1 or Th2 dominant, and experimented with a number of supplements recommended in the Th1 tips or Th2 tips articles. Some worked great to take my inflammation down -- some didn't.
• I strictly keep a circadian rhythm - wake with the sun, wind down & go to bed shortly after dark, block out all kinds of blue light at night. I follow the same sleep schedule 7 days a week - with no non-emergency exceptions. It's challenging to keep this schedule because none of my friends or social events do. But the benefits are worth it.
• I take mitochondial boosting supplements & antioxidants which are listed in the Protocol to Cure Chronic Fatigue. I only take some of these. They helped a lot with energy.
• I get sun twice a day. I'm on a regular, gentle exercise program. I track my workouts with an iPhone app and log my calories / carbs / fat / protein intake daily. The sun gives me real vitamin D and exercise literally builds new mitochondria.

I hope this gives you some insight into the Selfhacked healing philosophy. I was fortunate in that what worked for Joe also works extremely well for my own debilitating chronic illness - so his findings were an awesome 'cheat sheet' for me.

 

[Avengers26]

@Sherpa Thank you. Those are some easy tips. I haven't checked the links yet which I will do later. I will have to look into the lectin avoidance diet. Do you avoid gluten and/or dairy, too?

I do need to have a consistent sleep schedule. I am bad about it & I think it's something that will be very helpful.

 

[Sherpa]

@Avengers26 Selfhacked's Lectin Avoidance Diet excludes wheat and dairy. It also excludes even more foods that trigger inflammation in many people with autoimmune disorders (like beans, grains, corn, soy, potatoes, tomatoes, yeast and even some veggies), so it is very restrictive - but doable if you are in a position to grocery shop & cook somewhat frequently.

The keeping a regular sleep schedule is CRITICAL for me. My inflammation and brain fog goes way up if its even slightly thrown off by going out / socializing / staying up / web or news surfing at night. I didn't notice so much when I was inflamed and miserable all the time anyways, but once you experience a "clean slate" of feeling extremely good and well rested, it's very harsh to go back to living with your biological clock gone helter skelter, and your gene scripts halfway firing.

 

[drob31]

@Avengers26

• I strictly followed the Lectin Avoidance Diet. I bought an Instant Pot pressure cooker and a juicer to get me lots of high quality protiens and non-inflammatory plant foods with minimal prep time. Some (but not all) of my inflammation and brain fog was caused my lectin sensitivity and food intolerances.
• I tried to determine if my immune system was Th1 or Th2 dominant, and experimented with a number of supplements recommended in the Th1 tips or Th2 tips articles. Some worked great to take my inflammation down -- some didn't.
• I strictly keep a circadian rhythm - wake with the sun, wind down & go to bed shortly after dark, block out all kinds of blue light at night. I follow the same sleep schedule 7 days a week - with no non-emergency exceptions - even though my schedule is at odds with my friends and many social events.
• I take mitochondial boosting supplements & antioxidants which are listed in the Protocol to Cure Chronic Fatigue. I only take some of these. They helped a lot with energy.
• I get sun twice a day. I'm on a regular, gentle exercise program. I track my workouts with an iPhone app and log my calories / carbs / fat / protein intake daily. The sun gives me real vitamin D and exercise literally builds new mitochondria.

I hope this gives you some insight into the Selfhacked healing philosophy. I was fortunate in that what worked for Joe also works extremely well for my own debilitating chronic illness - so his findings were an awesome 'cheat sheet' for me.

Hey Sherpa,

You mentioned gadgets. Which gadgets worked for you?

 

[Sherpa]

Hey Sherpa,

You mentioned gadgets. Which gadgets worked for you?

Instant Pot 7qt pressure cooker, Breville Juice Fountain Plus juicer, red glasses to filter out blue light after sundown, orange bulbs to reduce blue light after dark.

The Instant Pot breaks down lectins harder than normal cooking it hugely saves cooking time. It's not essential but extremely helpful for grain-free diets that require an abundance of fresh meat & veggies to be cooked.

A good, non-inflammatory diet is critical for my good health. And sleep .

I wonder how many sufferers on this forum unknowingly eat lots of inflammatory foods, stay up half the night on the computer, etc.

 

[Valentijn]

I wonder how many sufferers on this forum unknowingly eat lots of inflammatory foods, stay up half the night on the computer, etc.

Could you get any more condescending? Your attitude is more than enough to turn me off from any treatment or practitioner you might be advertising.

From your posts, my only conclusion is that you don't know what the hell you are talking about regarding ME.