I am not a big fan of genetic research and in the context of ALS I see a big problem which am going to describe. Question: What do you see on the image of this post? I see a businessman eager to empower of our DNA.
During my independent investigation efforts I learned a lot about ALS and one thing which is more and more obvious to me is that genetics as a factor has marginal importance. It still plays certain role because it plays role in everything we do – our DNA is our programming language and code inherited. It affects how we look and most likely even why we are who we are (personal traits, strengths, weakness, desires etc.). Still in my opionion it is only starting intitial configuration and then our acting during the life determines our destiny. There is no doubt we all are not standing on the same starting line – that is why we are so divers in terms of look, all the various abilities and gifts like natural intelligence and problem solving skills. Part of it certainly is individual level of resistance or predisposition to specific health problems and diseases.
I think about these predispositions similarly as about creating characters in computer games. It reminds me those times when I played computer games as kid, mainly RPG games (role playing game). An excellent example and my favourite was postapocalyptic Fallout. At the beginning the player configured his gaming character using skills and traits like strength, agility, charisma, endurance, intelligence etc. This setup had to be done wisely as certain abilities are in mutual conflict (agility Vs strength) and each had its positive aspect as well as negative aspect. For example if your character was weak he could not wear the heavy weapons like minigun/gatling or rocket launcher 😉 If the character was not bright enough he could not disarm various traps (booby traps or unlock doors via terminals). However during playing the game the character was evolving and many initial development areas could be significantly improved via gathering experience points (XP points) and distributing them among the preferred skills. I think this is how it works (or can work) with us in our lives – we have predispositions and we evolve, we sense (I love Equilibrium movie!), learn and improve but we also tend to stagnate or even harm ourselves because life has many traps for us.
In such discussion we should remove those extreme cases as usually. This is a typical mistake in human thinking – some people focus too much on extremes and argument with them, they question other logical findings using existence of extreme cases. This is not wise as extreme case is extreme case, it is a rare case. It tells us that things can go that far (negative or positive direction) but this does not mean it should be the primary optics. In health issues this comprises lot of nasty diseases which hit children very early including the moment they born. Any theory claiming these poor kids did anything wrong seems totally wrong. In ALS most people do not show any defects (they are often top performing athletes!) but they probably possess certain predispositions. Science tries to decipher this through its genetic research – finding combination of genes which could be responsible for this lower tolerance to still more or less unknown combination of environmental factors. This search for combination against combination makes the whole thing very complex but people are progressing nonethelesss. There is no doubt such research can provide us some value or insights but we should realize that ultimate root cause cannot be in genes but in that combination of environmental factors. Why? Because genes are damaged and sometimes perhaps inherited damaged as a result of living within the environment. There is a very simple evidence for this but do the efforts including funding reflect that? Simple answer is no and this can be one reason why we are still loosing in this ALS fight. We spend too much on a marginal aspect. Why? People making the decisions are not that silly, there are always reasons and often these reasons are non-transparent. There are side interests. But it may not automatically imply dark side or evil like behaving. Instead it may be just a result of insufficiently developed collectual consciousness – people, often subconsciously, put more weight on their personal interests than interests of others including global interests.
The existence of familial (fALS) and sporadic (sALS) is that simple evidence that the environment plays much higher role. How much? Measured by occurrence of cases the environment plays 10-times more significant role than genetic because sALS comprises 90-95% of all ALS cases! Please remember this and think about it as well. And that is not all. Because everything including lives of our ancestors occurs within the environment it is very rational to think that even the fALS (which is 5-10% of cases) has its roots in environmental factors but effecting at that time, in past. In other words effecting on lives of our ancestors or relatives. The ratio between sALS and fALS today is estimated roughly as 10:1. This can be used as an indicator how bad the situation is – if fALS cases start increasing we should know there is something wrong happening in the environment and it propagates through DNA damage and makes new generations more vulnerable but in such case even sALS cases would need to increase. The ratio would express the rate of genetic degeneration of humans. Easy and logical conclusion is sporadic ALS is the ultimate and original version of the disease. One can even find support for it in the genetic case studies1. Practically everyone should start yelling and asking what can be those environmental factors?
I have covered practically all those most suspected factors on this website so simple recap follows. Please also note there is actual consensus on this list in scientific circles.
- Increased toxicity – all kinds but heavy metals being most important due to their role in oxidative processes (term oxidative stress is highly coupled with ALS)
- Infections – viral as well as bacterial, pathogens like fungi also suspected.
- Stress exposure – psychic as well as demanding physical form; chronicity here is big risk!
- Deficiencies – human organism has certain architecture and it requires ongoing supply of inputs to function well – to be able to resist (see previous three items again against what it needs to resist – for example the first genetic mutation observed , SOD1 gene is responsible for creating the proteine to detoxing the organism and this enzyme requires specific building blocks like copper and zinc, similarly glutathion2 requires selenium – if people are deficient in these elements how can the organism work well? There is much more including the magnesium importance I covered previously or B-complex vitamins. People should also know that the enzyme like SOD is part of many natural food/products so they could supplement it and help their body if theoretically they struggle with creating it.)
If people cracked this environmental puzzle then ALS as an incurable problem would be solved because all what would left is those predispositions and due to that new knowledge people could know what to avoid and also what to do when already in problems – working quickly on remedy would most likely heal the ALS symptoms and heal the patient. What is the reality though?
The current state indicates people favor digging in genetics not in the 10 times more important area. Genetics and DNA rule. Humans are fascinated with this phenomenon because obviously they want to get more control in these natural and by evolution driven processes. As usually it is camouflaged with noble goals – helping those less fortunate but in reality it is much more driven by non-transparent power and control seeking objectives. The abuse potential is so enormous that given the still insufficient level of human collective consciousness we should not doubt that big problems are in front of us. In medicine the invention/observation of DNA quickly ignited this “Holy Grail” thinking.
When I was looking at the NIH/CDC report the first thing I did was to export to Excel and sort the table by amounts spent in a descending order to show the biggest budgets first. Where do you think genetics ended?
Just for your information ALS as a category ended on place #184 – in my previous post I clearly stated these figures most likely cannot be interpreted in such simple way, mainly as a result of the structure of the report. But it should definitely confirm that genetic research is well funded. One further note on the report – it seems Azheimer disease has 25-times bigger budget than ALS. There is no need to deduct anything negative from it – I am just mentioning it. Alzheimer disease is a really huge problem and closely related to ALS as well (brain damage). In her book3 Michal Schwartz writes that based on some public research people are scared with Alzheimer more than anything else including cancer and ALS. She described both these neurodegenerative diseases in single chapter and tries to point out the common aspects. This fear is most likely caused by simple fact – Alzheimer has much higher incidence4 than ALS and thus people know it threatens them more likely. In my opinion it does not imply Alzheimer would be more fearful than ALS in terms of symptoms. I think it would be the opposite if the incidence was similar. I myself could see both these diseases in our family and ALS is much more brutal. The fact it can be diagnosed in young age while Alzheimer is practically always disease of old age also means something. Anyway both diseases are nasty and we should soon achieve a real breakthrough in preventing and curing them.
The big problem with genetic research is not just it is overfinanced which affects more important areas. The problem is that it just does not lead to solution even if it is successful. In ALS this research revealed up to now tens of ALS suspected genes with two dominant genes (SOD1 and C9orf72). The SOD1 gene was revealed in 1993 and there is no real implication of it for the benefits of ALS patients in 2021. Same is with all the other genes. In fact what science revealed under huge expenses is just another puzzle – combination of genes but again there is no quick and significant curing potential for ALS patients. How does that help if you are diagnosed with ALS and after genetic examination you are also told mutated C9orf72 gene was detected in the DNA of couple of your brain cells? Is the answer a gene therapy? I doubt because this presents another huge problems, another puzzle with very speculative results.
In terms of practical use, meaning the ability to cure people from all those tough diseases science is clueless. There is a CRISPR tool which enables certain gene manipulation and humans already started with unethical gene hacking projects. One Chinese scientist has damaged a gene in embryos of two babies in order to make them immune to HIV virus. The gene he has damaged is encoding a protein on immune cell surface through which HIV binds to the cell and infects it. This way the man hoped virus will be kind of neutralized since the babies should not be able to produce such protein in their bodies. However this man does not know what all the protein is important for so he could have created more damage than good. Besides that viruses are highly adaptive enemies and they mutate so there is no guarantee such risky intervention will serve the intended goal well. This really falls into hacking category and I don´t like hacking – I prefer architecting and Mother Nature and evolution (if not something even higher) is the greatest architect of all times. The final problem with all these efforts is that it just does not work, it does not yield anything great for ALS patients.
“I would say genetics is more 22nd century thing. In 21st century humans should first do their homeworks and focus more on environmental debts which still accumulate. Debts have to be repaid and will be repaid – in this case it is our choice what payment method will be used. We can pay soon enough with well targeted effort and positive changes introduced or with deads, explosive growth of diseases and new tough problems rising from ignoration, doing nothing and overfocusing on genetic aspects. Genetics won´t save us.”
Unfortunately this hype and overenthusiasm means that resources are missing somewhere else – where it can actually solve today problems affecting our health. Genetics will not help with fixing mistakes done by humans in previous centuries – negative consequences of industrialization, environment pollution, growing toxicity in cities, nature looting etc. I would say genetics is more 22nd century thing. In 21st century humans should first do their homeworks and focus more on environmental debts which still accumulate. Debts have to be repaid and will be repaid – in this case it is our choice what payment method will be used. We can pay soon enough with well targeted effort and changes introduced or with deads, explosive growth of diseases and new tough problems rising from doing nothing and overfocusing on genetic aspects. Genetics won´t save us. Surprisingly, investments in those different areas could improve global health more than anything else including genetics/DNA. We already have example in genetically modified food – nobody rational wants it today, people want natural “BIO” marked products. This is a clear evidence of the obvious pattern – humans always want to hack something while having no great understanding of it, humans are reluctant to address a problem in the right and gradual way. Instead they are impatient and want to succeed with some dirty shortcut approach. What usually follows? A lesson this is not the way. In medicine the pressure for genetic research is more than apparent and it falls into dirty shortcut approaches too. High costs, unresolved ethic problems, no solution at the end and what is the worst with ALS patients still dying in the background as one century ago. Well OK, to be fair I should write they have better paliative care with all the special computer devices. This is great but I want more – I want breakthrough in the disease curing!
All these simple thoughts and statements may not be shared by other people but I would ask them to think and discuss. The global discussion is not strong and loud. The genetics as of today is to high degree blind and dangerous path because if humans won´t resolve the environmental problems then how can even 22nd century gene therapy help? You can fix something but it will get damaged again, simple stuff. Science knows that our DNA and thus genes is subject of mutations and viruses or heavy metals are very dangerous mutagens. All highly suspected in ALS but people dig stubbornly in genetics as they believe they can hack out of the problems. I am sorry but this will not work. The ultimate problem is that all the genetic research is to great degree only extremely expensive detour and despite some partial successes or new observations humans will stand in front of the same old problem – focus on factors which damage our DNA, focus on environment, focus on growing toxicity and viral and bacterial infections. However the problem with detours is lost time. The most precious thing we have. We know that using simple thinking these projects should have funding 10-times bigger than genetics – still on medical level only, I am not talking about cleaner sources of energy etc. This would mean current ALS funding should roughly increase 100-times (see the figures above) which is not something we can expect. It would mae more sense to distribute funds more rationaly before it is not too late. However private sector short term interests (investors want returns!) is big obstacle. If people would not be greedy and would be smarter and more compassion showing they would know returns would come anyway as an indirect result of improved global health.
Genetic research will not resolve problem like viral or bacterial infection, whether stealth or clearly visible. It won´t address toxicity which can compromise immunity and promote pathogenic processes like chronic inflammation. These my justifications also further explain why I think ALS can be a great candidate in choosing some specific symbol for global changes – it can sound like a crazy idea and some may argue there are other tough diseases but these are included indirectly too – it does not mean they are neglected or put aside. It only means that brutal mystery with officially stated 100% fatality can serve well as a symbol for changing the way we think and approach tough problems. If we found out it worked with ALS we will know all is possible. This is also why I wrote Their Fight Is Our Fight post.
“The ultimate problem is that all the genetic research is to great degree only extremely expensive detour and despite some partial successes or new observations humans will stand in front of the same old problem – focus on factors which damage our DNA, focus on environment, focus on growing toxicity and viral and bacterial infections. However the problem with detours is lost time. The most precious thing we have.”
— Mr. Underhill
- 1.Figuereido M. ALS-linked Mutations Surprisingly Common in Absence of Family History. AlsNewsToday. Published 2021. Accessed June 2021. https://alsnewstoday.com/news-posts/2021/04/05/als-linked-mutations-surprisingly-common-patients-without-family-history-uk-study/
- 2.Moustapha A. Neurodegenerative Diseases: Potential Effect of Glutathione. In: Glutathione System and Oxidative Stress in Health and Disease. IntechOpen; 2020. doi:10.5772/intechopen.92240
- 3.Schwartz M, London A. Neuroimmunity: A New Science That Will Revolutionize How We Keep Our Brains Healthy and Young. Yale University Press; 2015.
- 4.Epidemiology of Alzheimer’s disease: occurrence, determinants, and strategies toward intervention. Dialogues Clin Neurosci. Published online June 2009:111-128. doi:10.31887/dcns.2009.11.2/cqiu
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