Chronic Diseases Demystified Website describing ALS or Lou Gehrig disease from experimental point.
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In this post I would like to touch one topic which is very relevant in the world of chronic diseases. Almost everyone knows that chronic diseases often present a tough problem and standard medical system does not offer great solutions if any at all. What then? People need to enter grey zone …
I got inspired by the term from economics where „grey economy“ is a known expression. It describes an area which is characterized by lack of standardization, regulation, supervision so non-trivial level of uncertainty is the logical consequence. In health care and health issues we know what it means – if medical system says „I am sorry but I cannot do anything more“ or „all we have are these pills which will suppress your symptoms (+ but possibly worsen 2-10 other things)“ or “we only have this drug which may prolong your life a bit” people often have no other choice than look for help somewhere else. There is quite a few options but none of them provide any guarantee. Honestly, this is not the greatest problem as in general nobody provides a guarantee including standard medical healthcare system, even in case it is some less serious issue. Problems can arise always and anytime but wise people always try to stick to some rules. So what they do? They manage risk.
This risk management is our ultimate guideline not only in the world of unsure investments but also when we are seeking for alternative solutions with the aim to resolve our health issues or help someone close with resolving health issues. Due to the inability of medical science to solve many problems and also inability to provide good information (what is wrong, why things probably happened, what could be done) the various branches of alternative medicine are expanding and people do experiment with them. Complementary medicine, holistic medicine, homeopathy, chinese medicine and acupuncture, herbal medicine, various relaxation class therapies or more esotheric types of therapy like spiritual healing or some shaman rituals somewhere in Amazonia or Africa. Well, I am not an expert and honestly I myself do not know what all people can try. Anyway the number of choices is not small.
When people are already in serious troubles they may tend to try more things including those which they would not consider before („crazy stuff“). This is a natural human reaction but it can make things worse. Here people basically need to make decisions on their own – always! If someone starts giving advice here or there or makes promises it is still the client person who needs to make a decision. So below questions practically always arise.
- Trust or not?
- Rely on this or that?
- Try this or that?
- Believe in this or that?
- Is it worth trying?
This can be very problematic and dangerous and that is why this grey zone indeed is a danger zone. What should such person seeking for a help do? Is there any good advice? These are really tough questions and I do not want to pretend I can provide great answers. However since I have some experience (and also personal results!) I can try to help and also describe certain approach which I consider rational. Obviously such approach should apply risk management strategy and meet some basic criteria.
- Safe (safety of patient is of uttermost importance)
- Existence of trustworthy signs (at least something!, look for it thoroughly!)
- Affordable (need for selling house and taking debt for 1% chance is not really affordable)
- Accessibility (of the therapy or resources required etc.)
- Complexity (of the application, self made vs need to rely on other persons)
Safety
This is obvious requirement – people want to address existing health issue and not create any new. However too much emphasis on safety can lead to scenarios where people do not do anything – they are afraid, they wait for others who need to pioneer the way for them. Also today people are obsessed with improper use of statistical methods – everything is assessed on big scales, case studies, thousands of people etc. It is so easy to introduce noise or mistakes into the used methodology so the promising result is denied due to low score, low statistical efficiency or correlation etc. This is how it works today. But in our case we are no interested if 1000 other people do all the things as we are able to do, because we are unique with unique body, unique genetic profile, unique microbiom setup, unique personality and lifestyle and when it comes to problems unique mental power to face them and fight them. That is why bright people in this grey zone quickly realize they are alone in it, they need to make decisions and act based on their and only their situation. They know they need to do changes otherwise nothing changes (i.e. illness/problem won´t go away). The best situation is when people are not burdened with existing medication – because it often is this medication which creates increased risk stemming from self made experiments. If you have autoimmune disease like multiple sclerosis or systemic lupus you probably are on medication which acts as „brake“ to your immunity. If someone just came and told you: „Stop taking it and do this and that“. How would that sound? This is risky, untrustworthy and that is why you need to look for further signs. I was in better situation as all medication I was ever given is blood pressure drugs which I trashed after week or two and instead „started experimenting“. I was sure there is better solution and now my BP is normal and I will write dedicated post on this yet. But as written earlier this was not that tough, many people will face much bigger dilema. It is double-edge sword situation and that is why everyone needs to prepare for taking ultimate responsibility for his/her decisions and future curse of things. If you screw up, it was YOU who screwed up. I had no problem with it. I consider things wisely, but then I decide and I take the responsibility. I will not blame anyone else.
Existence of trustworthy signs
This is another extremely important thing. This requires the person having problem to start interest in things and this can be quite a problem today. People are used to rely on system. But system does not offer great solutions, as we already know. People may feel lost as they can ask themselves: „How can I study or decide? I work only as … and I dont understand anything else“. That is understandable and it is why it is not for everyone. Grey zone is for gifted pioneers who go and buy books, who study things and who perceive their body signals so they always find some „trace“ and „link“ – once such person enters this path, after some time he or she may realize there is a strange blessing activated and things may not be that complex and impossible to decide. I personally have this experience. All those things which happened to me were retrospectively hard to explain – coincidences? Luck? Who knows 🙂 But going back to those signs of trustworthiness it starts with simple things. Typically someone can offer something, it already looks good but then the person says „and I can offer you this line of products which will do that for you, you get special price, only 399 USD“. If I heared this I would immediatelly say: „Thanks and bye!“. Many people will not do this because they are in troubles and will just try anything simple but then they write complaints on internet it did not work etc.
Truth is that when it comes to health issues, then honest and best help comes free. Always remember this! If you keep your eyes open and ears properly adjusted you can get great advice from friend, colleague or an absolute foreigner. He/she won´t require anything in return. He/she will just share some experience and provide it. It may be only some analogy or something which you can leverage indirectly. But once you receive some early signals it is that moment in which you need to start getting interested. The motto here is „trust but verify … and deny if it really smells“. Also before you deny something you can always ask further non-trivial questions and test the subject which gives you the advice. Based on the communication and attitude you will know more. There are obvious and proven things but then there are parts of theories which even our famous science has never proved and it is „in air“. If you realize something goes trully against well proven scientific facts then it can be sign someone wants to fool you or he/she is just wrong. There are many people with complete anti-system thinking because they lost trust in the system and irrationaly start deny everything. It is a thin line which person can be walking on. One example which I will cover very soon is already mentioned phenomenon of autoimmune process. There is clearly proven part („presence of auto antibodies making the tissue damage“) but there is “grey fog” when it comes to answering why and how they occurred in previously healthy individual. Science sometimes lacks answers on fundamental questions but behaves like it knows – this is the example. The way how AI diseases are communicated to people is just terribly wrong, period. So take your time, become proactive and be rational, never allow bad emotions to twist your thinking. Be curious but be also reasonably suspicious.
Affordable
This is obvious requirement. If someone including system gives you a hope but then it adds you will need one million USD because the experimental treatment (which may not work at all, at the end) is not covered by public insurance, it is not affordable. This is happening in reality. That is why there are so many desperate people who run public collections – there can be a sick child but treatment is so expensive that even if parents sold whole household, both cars and took mortgage it won´t be enough. This is the system we live in. I am very critical to this. Any rare disease treatment, and mainly that experimental just has to be covered by goverment, by whole country, by whole nation and in some cases even global society (supranational support). This creates solidarity in tough times. However even less pricy offers can be assessed as unaffordable. If one adds the tiny chance of success it is just another problem. Example are those stem cell therapies which were not part of insurance and still very pricy – and who recovered completelly? Nobody. If you know someone, please let me know. This way the system abuses those sick people. It not only uses them as “testing rabbits” but it often makes them to pay for it. In my opinion this is unacceptable in 21st century but I can respect you if you think it is just fine.
Accessibility
Here you can already be decided it is worth trying, and you can afford it but it is still not easy. Perhaps your country does not provide that therapy. You don´t know foreign languages, you have no contacts, you are lost. In best case some non-profit organization may give you a hand. I have no good example here but … For example euthanasy which of course is not a therapy in the sense I would like to write about here is forbidden in many countries. It is extremely sensitive thing so I just mention it, but obviously this website is and will be about all things you can do to survive, get better, heal and recover.
Complexity
Last requirement I chose is complexity. Please do not take the list as exhaustive, I write articles out of my head, immediate thoughts. However if some option looks available, is not really expensive and seems promising and safe to give it a chance … but you need to conduct non-trivial procedures which you certainly do not feel comfortable with it is a problem. Based on my experience this is usually not a big deal, because the best things are usually simple. So treat this as a sign as well. Simple is better than complex! The complexity usually is somewhere else. Based on my experience the greatest complexity lies in human mental stereotypes which need to be overcome. Complex is also just to start and to believe in success. This is why people are lazy and invest in drugs and pills. It often gives immediate relief without any effort, despite often it did not do anything about the primary cause of the problem. Getting out of comfort zone is necessary.
Summary
Now I would like to summarize why I write about such things. I have spent some time monitoring those ALS related websites or better those Facebook pages and noticed one thing. There are FB profiles which comment those „ALS posts“ and promise curing and recommend some cure. However nobody comments that, nobody replies to it. It is obvious scam or it looks like that. Some African or exotic name profile, bad writing and gives URL for a cure to one of the biggest mystery. I myself also posted few comments there in this way – but I tried to raise interest of these communities in alternative explanation of all these terrible diseases and initiate a debate – there is no interest in it. It may be wrong but it may be also at least partially correct. After all I have not just woken up one day and started saying it is like this or that. Instead I analyze proper sources, scientific journals, scientific books and I compare my life ALS experience with the theories coming from the scientific world, not from exotic spammers promising a cure to „incurable disease“. Anyway I understood I ended in the same category – I cannot wonder. It is just what it is.
However as usually I verified these „miracle vendors“ and contacted them that I want to do an interview with them, if they claim their customers cured MS or ALS. No response. That website even does not have e-shop and products online. But what they do have is absolutelly lame and anonymous customer reviews „my husband was diagnosed with ALS, he bought this and that and recovered“. Another thing this website has is automated chat service as is already standard today. So what I did? I pretended I am interested in their products and someone or something started responding (chatbot?). I asked them some real questions and those answers were … absolutelly untrustworthy. Anyway they promised me I can get my bottle with some herbs for 400 USD. I have archived the whole chat and can publish it here, anyway the way these people communicate is just terrible. When I realize they in fact abuse desperate people who are in extremely tough life situation I was really upset. I was in this situation so I know what is it about. Instead of honest help someone runs unethical business. Other interesting thing was that those ingredients in their products are not that bad, it has its value and I mention many of them here as well. Many magazines describe them too. But the way it is served is just bad. My website may also look untrustworthy or too crazy, but I can assure everyone it is not a business, instead I am funding it using my own money and it is purely informative source – I do my best to explain things or point anyone to further resources to simplify “grey zone journey” for people. Then it is everybody´s call. Please add „Style of communication“ on the list of criteria I published here.
The theory described on this site, ALS Experimental Theory, meets all the criteria above. It is not a big surprise, right? I tend to not be a hypocrat. However I know it still is not enough. That is why my effort is not aimed at convincing people to believe in it. Instead I am trying to convince them it is worth to share it (“ALS 1KD CHALLENGE“) so that standard research teams can thoroughly examine it and either deny it or … support it to certain degree and refine it. After all they do not have any theory anyway … (ALS case).
So yes, it is a tough journey but we all know sometimes there is no other way. My story is related to this ALS disease which I saw on my mother case but there are many other diseases. I believe if people give it everything and soon enough, a full heart, they can achieve impressive results. Results which science cannot explain and which science would never support if asked for „permission“ prior executing the steps. Yet in reality a miracle came. World is full of surprises so be very cautious but at the same time be brave with introducing big changes in your life (lifestyle, emotional stress regulation, focus on your mission, resting, quality sleep and food). Grey fog can disappear and your honest effort will be rewarded, light will finally appear. One should always be aware of those miraculous spontaneous remission cases. There is no mystery in it, it is a reality which happened to real people and medical science calls it in this way, but it never was for free, it always required non-trivial effort and interest of that afflicted individual. I wish everyone good decisions and great results in these endeavours.
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