BeleagueredPotential

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BeleagueredPotential 11 Jul 2017 4:50 UTC
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in reply to: Mitchell_Porter’s comment on: Open thread, June. 12 - June. 18, 2017
I spent a good year and half trying to answer questions related to the points you brought up after first seeing the mind-body specialist, although you gave me some good perspective.

and that is a characteristic symptom in people who have a purpose they regard as supremely important, who find absolutely no support for their attempt to pursue it, but who continue to regard it as supremely important

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And then at some point it affects your health.

Actually I only discovered the purpose a couple of years after the myalgic encephalomyelitis set in, before that point my primary goal was to get better and to worry about other goals afterwards. I do not think that becoming more purpose focused translated into me devaluing my difficulties; I was focused on myself and my health at the start of this thing and that seems to have remained constant, it’s just that suddenly those weren’t the most important things to me anymore. My health became not just something intrinsically valuable but also a very important means to an end. Though I’ll be mindful about how my goals affect me, even if they weren’t initially involved in my health problems they could be involved in their continuation if I take matters too seriously.

I don’t want to say that this is solely about emotion, we are chemical beings affected by genetics, nutrition, and pathogens too. But the planes intersect

Exactly this; I keep learning over and over new ways in which the mind and body and all their subsystems can affect each other in very major ways. Several insights related to this concept put me into partial remission in the first place.

so I suggest that you at least wait until his next visit, and use that extra time to understand better how all these aspects of your life intersect

I wouldn’t say that I’ve done all I can in figuring out how all these things interact with each other. I would say though that with the success of the partial remission and all the work I did afterwards towards figuring out mind-body interactions within myself that I am at the point of diminishing returns with results vs effort and that I need to pursue other avenues at this point.

BeleagueredPotential 11 Jul 2017 4:27 UTC
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in reply to: ChristianKl’s comment on: Open thread, June. 12 - June. 18, 2017
This was extremely helpful in figuring out what to do, it hadn’t occurred to me that a Bayesian calculation would be useful here. After tallying up all the variables I came to the conclusion that my current methods had a lower chance of helping me than I had always implicitly thought. What I referred to as “extreme risks” may not even be the truly risky options when considering other factors; like how the longer someone has myalgic encephalomyelitis the less likely it is they can get better. I realized the types of solutions I’ve been trying give me the mental satisfaction of having “done something” but they might not stand the best chance of actually working.

I trust this one doctor more because I am trying to treat this condition rather than manage it and patients of his have reported more actual reduction of symptoms than almost any other ME doctor I can find, except possibly Dr. Sarah Myhill (but she isn’t accepting new patients). I have seen many health professionals (general practitioners, psychiatrists, dietitians, etc.) already but only the one mind-body specialist has treated the ME rather than just managed the symptoms.

After careful consideration I decided in the end to go to the appointment. He ordered a lot of lab tests and it was quite a bit more expensive than I thought, but I had anticipated that possibility beforehand and went ahead with it even so. I should get all the results back in one or two months.

Given that you had success at improving your condition with one mind-body paradigm, why not try others?

This is precisely what I thought after seeing what the mind-body specialist achieved. I tried numerous approaches over the following year and a half; such as seeing a therapist, cognitive behavioral therapy from a book, and acting on suggestions from the specialist. Unfortunately I didn’t see any further progress for my primary health concerns (there were some favorable, unrelated side benefits though). My guess is that only some of the physiological issues going on within me could be corrected this way, at least for any of the mind-body paradigms I’ve tried.

Given that you speak about travelling to the US it would also be worthwhile to know where you are living at the moment to know about what’s available to you.

I live in Calgary, Canada at the moment. I am currently on the waitlist for local doctor Beverley Tompkins although from my conversation with her receptionist I think she is probably someone who will mostly give me treatments I’ve already tried. The most highly recommended specialist in my city is Dr. Eleanor Stein but she is not currently accepting other patients due to a high volume waitlist. While I’ve done some searching for effective specialists in Canada I am not having too much luck, although I haven’t been thorough with my research yet. I thought I found a decent one with Dr. Alison Bested, but she left the Complex Chronic Disease Program a few years back and I can’t get a hold of her or even confirm where she is.

BeleagueredPotential 18 Jun 2017 8:10 UTC
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on: Open thread, June. 12 - June. 18, 2017
I find myself in a potentially critical crossroads at the moment, one that could affect my ability to become a productive researcher for friendly AI in the future. I’ll do my best to summarize the situation.

I had very strong mental capabilities 7 years ago, but a series of unfortunate health related problems including a near life threatening infection led to me developing a case of myalgic encephalomyelitis (chronic fatigue syndrome). This disease is characterized by extreme fatigue that usually worsens with physical or mental exertion, and is not significantly improved by rest. There are numerous other symptoms that are common to ME, I luckily escaped a great many of them. However I developed the concentration and memory problems which are common to ME to a very large degree.

I had somewhat bad ME until a few years ago when in conjunction with a mind/body specialist I was able to put it into partial remission. I am now able to do physically demanding activities without fatigue but I still have severe cognitive constraints; my intelligence now seems to be almost as sharp as it ever was despite deficits in mental energy, concentration, and memory (especially working memory). However having efficacious mental throughput relies so much on these attributes that support intelligence, and I am hardly useful at all as it stands. Therefore my primary concern these past few years has been to resolve my medical issues to a large enough degree to enable real productivity.

I am still in this state despite putting all of my effort towards remedying it, I have stuck to safer treatments (like bacteriotherapy or sublingual methylcobalamin) in order to prevent worsening my condition (although I have had some repercussions from following even this philosophy). I am wondering if I can reasonably expect to get better using this methodology though. It could be that I need to take more extreme risks, because I won’t do any good as I am and time continues to tick away. Looking at the the big picture with a properly pessimistic outlook gives me the impression that friendly AI research does not have a lot of time to spare as it is.

There is a doctor that is recommended by a large amount of people on a ME forum I frequent who has exceptionally aggressive treatment protocols. His name is Dr. Kenny de Meirleir and while I have misgivings about some of the stuff I’ve read about him, I’ve pretty much given up on trying to find someone who is both good and doesn’t have a long wait list. I’ve gotten on the wait list of one practitioner who is local but I do not have too much confidence in them. Dr. Meirleir wasn’t too difficult to get an appointment with because he travels to the USA for a few days every couple of months and these appointments are not widely known about.

However even the cost of initial tests and evaluation could be an unrecoverable failure for me if they don’t pan out like I hope. It will cost thousands of dollars to pay for travel to the states, hotel, the consultation, and the comprehensive tests he is likely to run; even considering how much of the lab tests my own country will probably cover. Although at least then I could finally confirm a lot of unknowns about my health, such as whether there are infectious agents still affecting me. Despite all the testing I’ve gone through over the years he does a lot of tests I haven’t gotten yet.

It really depends on the results of the tests, but I’m reading plenty of anecdotal reports that suggest a high likelihood of me getting put on multiple antibiotics by him. Plenty of people whose stories I have read have reported worsening conditions and relapses of ME due to antibiotics, and I know from my research that ME treatments in general often have these risks.

The quantity of symptoms I have has always been small, which might indicate that there is a lot more of my physiology that is working the way it should be compared to the average ME patient. My condition is also in partial remission already and I am still under 30, so I consider myself to have better odds of major recovery than the low rates of total remission this disease is usually predicted to have.

The question then is; as rationalists what path do you think I should take here? If I choose to go to the appointment next weekend, I lose a large chunk of my limited capital but gain knowledge and possibilities for treatment. If I then proceed to do treatment of the type he often prescribes, I probably lose most or all of my remaining money in something that could stand the best chance of making me functional again but that could also do nothing or make me irrecoverably worse (or anything else between the two extremes). This is not money I can recover easily, work is difficult still and it could take me lots of time to save considering normal essential expenses. If I chose to do nothing, cancel the appointment, and continue on my safe but so far ineffective path then I keep the status quo and avoid risking my health. Although if I do this I waste precious time either waiting for one of my less risky solutions to work, or waiting for the unlikely possibility of researchers developing a cure anytime soon. The years it will take for me to finish developing and expanding my skills and knowledge after recovery have to be factored in as well, I cannot just jump into FAI research right away. There are no doubt other options and variables I cannot see at the moment but I haven’t found them as of yet.

Due to the aforementioned cognitive restraints I know that my ideas and research I have done on my condition are probably riddled with biases, errors, and gaps in knowledge. If anyone can offer suggestions or comments about this situation it would be appreciated. It’s safe to assume that the personal outcomes I face from this choice only matter in the context of whether it increases or decreases the probability of me being useful to friendly AI development in the future. Even if I only further recover partially and can contribute in other ways (like financially), I’ll consider that worth the effort.

I might not get the chance to answer any responses in a timely manner because of how much strain writing causes me (and if I do decide not to cancel the appointment I will have to prepare for travel this coming weekend). However reading and thinking both cost me less energy so know that any responses posted will be considered by me as carefully as I can and it will give me more perspective to help decide what to do in this situation.