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ALS Community – Buried Alive

When we see what ALS does to people we recall Holocaust. We see no hope, empoverished bodies,  human beings heading towards certain death. However we also see big lies, manipulation of masses and help which is not coming. It is time to break the silence again, at least on our website.

Introduction

Introducing ALS is already rather unnecessary as people including mainstream public are mostly aware of it. It is probably the most feared of „disease“ together with Alzheimer. However in terms of fear ALS beats Alzheimer from obvious reasons – it strikes old as well as very young people and inability to move at all is subjectively worse than inability to memorize.

If ALS strikes person in the twenties, thirties it is is always viewed as a personal/familial disaster. People with whole life in front of them are more or less suddenly put in front of extremely tough problem. It indeed is always a tragedy, even if ALS diagnosis strikes someone at seventies but when it hits a young person or young family with newborn babies the tragedy is heavily magnified. The fatality of the diagnosis is not only very unfortunate, it presents an ethical problem in which humans are failing.

If people are terribly afraid of something then logically it would make sense to unite powers, consolidate, regroup and fight the problem with the right priority set, unbounded creativity, until final breakthrough is achieved. In case of ALS, what would be that breakthrough about? Everyone yells: THE CURE! Yes, people want to have a cure for ALS. There is something we need first though. What can it be? It is AWARENESS and KNOWLEDGE.

The imagination of the cure for such complex syndrome can get very different contoures then. Actually, how do today patients imagine the cure? It all seems it is some magic drug, perhaps combined with a next-gen gene therapy or just some good enough and regularly applied stem cell therapy capable to keep the rate of damage acceptable? Who knows but these already profit making half-solutions would be characteristic for our time … Anything improving the situation significantly would count though! Anyway such results are not coming and strange cycles of heightened hope followed with disappointment follow with iron consistency for decades. Isn´t there a time to revise the approach a bit? 😉

This article is part of SPECIAL INFORMATIVE OPERATION aimed at awakening ALS community including the public (we all are endangered!, our children are endangered too!) and improving the general understanding of ALS syndrome and related problems including some inevitable controversial aspects which affect the ALS fight.

  • This information is brought to you by true ALS fighting group.
  • This is NOT THE 🌿HERBAL GANG🌿 …
  • This is ALSR(esistance)!
When facing seemingly unsolvable problem it is good to establish very wide context – we should be able to look at the problem from stratospheric/cosmic heights (big overview, diseases in general, typical causes of them, environment, human approaches) as well as at microscopic scale (what is actually happening inside, molecular level, microbial factors).

Controversy Clarification

Comparing ALS with Holocaust, the biggest crime against humanity, can seem inappropriate. It is a medical problem, without the very obvious and primary evil human factor like german Nazis were way back. We agree, and that´s why we are not really making a primitive comparison here (if it still appears to you, then we apologize). Instead we are rather mentioning it as spontaneous association where only some aspects are shared or evoke certain similarity. The associations are not result of some calculation or counscious thinking process, it is a more result of some internal emotion, flashback type thing. That´s why we don´t feel inappropriate here or controversial, we are only describing what images pop out in mind when exposed to ALS reality.

#AspectHolocaust ExperienceALS Experience
1Injustice & human rights violationNo comments needed.Establishing deadly diagnosis violating First Do No Harm core principle under state of huge uncertainty, very limited knowledge and completely missing problem etiology.
2Hopeless situation 🖤No comments needed.No comments needed.
3Human beings sentenced to death 💀Based on ethnicity and other reasons.
Includes the after arrival ramp selection (left, right).
Diagnosis selection. After ruling out those better options, deadly statement is given, not so rarely in primitive and higher compassion lacking manner.
4Loss of human dignity 🍂Undress, dig your grave, lay there and get shot.

(gas chambers – no comments)
Accept fatal condition, sort out all life dreams and practical matters quickly and then die slowly.
5Physical exhaustion and gradual devastation, persistent psychic surge 😓No comments needed.No comments needed, exhaustion applies also to caregivers!
6Silence & failure of morale authorities, institutions, other interests prevail 🤑The Pope is silent to nazi evil, Swiss wealth built on Jewish gold
(often literally based on teeth of human beings). Romania, Sweden and Portugal collaborates by feeding Hitler´s death machine with raw materials like crude oil, iron ore, wolfram. Many other nations collaborate.
Science terribly incompetent, uncoordinated, failing, neglecting env. factors, delivering upfront known worthless and highly speculative drugs which cannot help (i.e. providing crap solutions, fact it is crap is a known result of clinical trial measurements). Science is unable to resist non-transparent financial global health harming pressure. Inudstry and economics profit on toxic and unhealthy products and also cause toxicity and harm, loot ecosystems.
7Insufficient world help/response 🌍It all started way before 1939 … Too much trust in failing science, lack of interest and scrutiny, fear, “no way” perception, underrating harmful effects of human non-transparent interests (industry, goverments, financial aspects in medicine).
8Dissemination of big lies (or untruth), cover-ups to hide reality, truth is dissolved. 🚩Perverted politics of racial superiority.
Keeping the Final Solution as classified, secret as much as possible, later destroying evidence as much as possible.
Overstressing and overfocusing genetics, neglecting more important obvious aspects, denying/neglecting ultra-promising cases which called for further elaboration/deciphering. Fostering censorship (ALS.ORG), establishing false hope doctrine in reaction to meaningful alternative theories while serving crappy drugs officially in FDA fashion … (i.e. hypocrisy of the highest magnitude).
9Few strongest and luckiest miraculously survived 🍀Escape from extermination camp, escape from sure death.
Quite a few true story books written.
Some escaped early enough so simple misdiagnosis causing no concerns is the conclusion.

Nelda Buss escaped even after getting ALS diagnosis, multiple times confirmed, and getting paralyzed. The case is still wrongly considered misdiagnosis and science has not learned anything from that.

False statistics, built on top of only unfortunate cases are used to foster deadly and sceptical atmosphere.
10Big surprise & wondering at the end 😱 German civilians in shock when transported to liberated camps.
World in shock, how human can cause something like that to other human.

Tons of human hair found in Auschwitz after liberation.
Drug is not a solution, neutralizing ALS will be most likely achieved in a very different way, people will be most likely badly surprised what the mystery was about and how it should have been fought, already for decades given those long known findings.

Patients were buried alive and were fooled there is no way, no knowledge, no hope (except false hope disseminated by alleged unethical alternative voices)
Table 1.0 – The ULTRA Controversial ALS-2-Holocaust simile

“The Seven Social Sins are:

Wealth without work.
Pleasure without conscience.
Knowledge without character.
Commerce without morality.
Science without humanity.
Worship without sacrifice.
Politics without principle.”

Frederick Lewis Donaldson (1925, Westminster Abbey Priest)

Part I – Official Failure

Frozen Awareness Project

In above paragraphs we mentioned awareness as a key objective. The ALS community knows that better than anyone else. It has run various awareness campaigns for at least last two decades. What is the result? People definitely are more aware of ALS. Media also inform about some known cases, there are some great movies too, various supportive events take place, social media are also helpful. We could conclude a clear success has been achieved in educating wider public. The community certainly hoped for more though – what has changed for the patients? This is the problematic part.

Within the last hi-tec 20 years nothing has really changed if we omit wider availability of some supportive devices. In ALSR we are interested mainly in progress towards recovering from ALS, not living few months longer on ventilator. The quality of life for patients and caregivers is still highly problematic – it often is a true nightmare for both groups, it harms even those healthy as a result of extreme burden, economical aspects, psychic surge and their health deteriorates then too.

It all seems the potential of these awareness campaigns got exhausted and needs a new stimuli. What we would ideally need is to build on the previous success and gear up. Those topics and messages used so far need to be extended. Below messages/requests are already not enough.

  • Please be aware of the existence of ALS (a horrific disease with no cure, leading to certain slow death)
  • Please support the research by dontaing money to organization XXX.
  • Please support the community by pushing FDA in regard to approving drug ABC.

It is the research which is being strangely unproductive in terms of good solutions or significant discovery. Despite being provided with not small amounts of funds, the results are very poor. Last 10 years in particular need to be very disappointing for the community, because the community really pushed itself to certain limit, penetrated the mainstream space, collected hundreds of millions dollars.

Absence of any substantial progress is highly demoralizing and it also impacts the wide public – it is a sort of confirmation the problem is practically unsolvable. If $250,000,000 have not moved humans closer to effective therapy by single millimeter, why would another 1-2 billion work out? Moreover if there are so many BIG PROBLEMS and this ALS is quite a rare disease? Obviously this is not the greatest logic, but certain linearity is naturally expected by humans, regardless the always possible big bang type discovery.

In ALSR we know there is one possible way how to start moving forward again. The community needs to make a deeper dive and start informing about and selling those already confirmed and concerning facts – the participation in the investigation is a must to ensure the research is well targeted (because today it is not). The community has to attract the public again with those obvious environmental aspects because that is a common thing shared with the rest of the society. This should also amplify the pressure on ALS researchers and other institutions, because the truth is, their overall work lacks sophistication, systematicity, organization and mainly coordination on higher level, i.e. working with obvious findings identified in base research, building the overall ALS context and verifying it through experimentation.

If the community supported with mass public voice won´t create this pressure and urgency, then obviously we will continue in the same, very slow and disorganized way eventualy providing another poor and researchers self-embarassing work results (Rilutek, Exservan, Tiglutek, Radicava, AMX0035 etc.).

Mind The iGap

The second key and before mentioned objective is knowledge. From obvious reasons we could tolerate absence of effective cure for ALS but we shall not tolerate absence of progress in terms of getting better insight into ALS, leading to major improvements in treating/halting the disease. The simple fact that nothing like that has been achieved yet implies that scientists still haven´t identified fundamental disease mechanisms, in other words they are still non-systematicaly guessing and repeating over and over that further work is needed.  

The research is ongoing, there are specialized centres but the way ALS is explained to public remains more or less same for decades without adding significant and new information. This should be actually concerning for everyone – this ALS team is just losing all its matches season by season since they started playing and it seems nobody is concerned much about it.

What is a 🚩red flag🚩 in ALSR eyes is the non-existing building of the overall ALS context. What ALS researchers demonstrate for years is a chaos and incompetency. In the next sections we will attempt to provide certain eye-openers to the ALS community and point out certain „iGaps“ – information gaps, aspects which are neglected, disinterpreted, not given the right weight and focus, while in reality they are of critical importance.

ALS Association

Let´s do a small review here and show how major and official ALS source informs about the disease in 2022. There are many other websites which inform about the disease in the more or less same way – and mainly by emphasizing key aspects: incurability, fatality, unknown causation, need for better funding.

As you can notice from below banner, this ALS Association even estimates that 2 billion USD are needed to come up with working therapy – if that is so simple why the United States don´t provide that funding right away? 2 billion to save 30,000 now + 5,000 Americans every year. Problem of priorities? 🤑 Role of planetary 👮‍♂️policeman👮‍♂️ is certainly important but what about protecting more own people? 😉

ALS AreaComments3DRating
Basic Introducing of ALSHere ALSA provides quite good information. The web visitor will get good introductory information if never heared of ALS before. What it is, how it manifests via symptoms, incidence/prevalence figures, forms and typical stages. We could give the best rating on the Three Dot Rating scale if this description made more effort in explaining the overall uncertainty around ALS and mentioned reversal cases including recovery cases (while still stating the unknown status in Bedlack fashion). 🟢🟢🟠
Disease MechanicsIn the section Disease Mechanism ALSA provides brief overview on What is wrong in ALS patients question and what findings the research has gathered so far. It correctly describes problem sub-domains like: motor neuron/axon highlights, neuron cell death observations, excessive glutamate neurotoxicity, mitochondrial deficits, neuroinflammation. What is missing is any attempt to inform about the common shared aspects which provide links among all above observations.

The right menu of this scientific focus areas page provide the bits of information for other related areas, some are covered as separate items below.
🟢🟢🟠
GeneticsTime to become much more critical – red dots are necessary. ALSA informs about the hereditary form and identified genes like SOD1, C9orf72, NEK1, TDP-43, FUS, UBQLN-2, KIF5A. Despite the differences in these genes in the sense of disease causation is far from understood, they are often described with words “gene is responsible for xx% of fALS cases” which is an obvious flaw. There is no such evidence, there is only correlation like finding and wild theories! Even the famous SOD1 is not true ALS gene, which ALSA itself describes and admits it at most can have some contibutory role. This juggling with expressions “gene is responsible” and “can cause/could possibly contribute/is associated” is just a clear evidence of the chaos and inconsistent terminology which is leaking into public space and spread by media results in disinformation or even fake news alike informing. Science has to be consistent, systematic!

The fact there is a genetical predisposition to ALS is obvious, logical and unquestionable. Why? Because the same applies for anything else, not just diseases and not just ALS. Whether person will be 7ft tall NBA player or 5ft 8″ tall/short surgeon who only likes to watch Lebron James et al. is highly influenced by their unique DNA. Same applies to health, disease sensitivity (obesity, heart disorders etc.). ALS simply is no exception here. This simply is not the case like Down syndrome and similar.

In ALS genetics is very overstressed and overmentioned factor. It is mainly due to existence of familial ALS (fALS) which is heavilly misinterpreted phenomenon. The ratio speaking for fALS is very unfavorable, it is 1:10 against sporadic ALS (sALS).
🟢🔴🔴
Environmental FactorsTime to become super critical – environmental factors is the true alpha-omega of ALS. Surprisingly the amount of information provided by ALSA is quite spare compared to officially 10 times less frequent familial and genetics promoting cases. Infections (including bacterial) are covered in few sentences whereas every suspected gene has its paragraph!
Does that surprise anyone in the age of global environmental dispute? This gradually escalating fight should not be kept aside, even in ALS problematics.

The only reason why we did not assign “3 reds” is the fact ALSA at least enumerated most of those known factors, obviously without any valuable insights.

BMAA toxin
Smoking
Toxins, Heavy metals
Solvents
Radiation
Warfare/Military Service
Pesticides
Exercise/Intense Exertion
Viruses (Infection)

For unknown reasons, military veterans are more likely to be diagnosed with the disease than the general public [als.org|What is ALS]
🟠🔴🔴
PreventionThis area is practically non-existing in ALS from unknown reasons. Naturally every average person is capable of joining/linking the risk factor information with prevention but scientists hesitate.

Less of BMAA toxin
Less of Smoking
Less of Toxins, Heavy metals
Less of Solvents
Less of Radiation
Less of Warfare/Military Service
Less of Pesticides
Less of Exercise/Intense Exertion
Less of Viruses (Infection)

Why do they hesitate? They are repeating phrases for decades and teaching us they are working on it, despite it is as obvious as above risk factor list with childish “Less of” improvement. However this could affect some interests, various industries so they play it safe.

Another problem is that we need to be able to define and diagnose earlier stages while having real treatment for these early stages (cancer analogy). In ALS scientists did not make any progress from some reasons. Telling someone he is terminally ill 2 years earlier does not seem a good idea so prevention is practically non-existing.

This interview published on ALSA can give a taste of it. We cite just one answer below.

Talk to us a little bit about what these risk factors are and where we go from figuring out what they are to this idea of prevention.
Yeah, they all really have interesting data to show us some linkages or connections to ALS. And I think it’s important for us to also recognize that these risk factors may differ from person to person and even from region to region. And so, obviously, not everyone that I see and take care of has this long history of chronic traumatic encephalopathy or a large number of head injuries. And not everyone that I take care of has served in the military. 
So, we do need to be thinking that these risk factors, including others like pesticides or certain occupational exposures or certain exposures to metals, may differ across the spectrum of individuals who get ALS and across the regions of the country and even the regions of the globe. But I think what’s critical is that these risk factors, whatever they may be, could really help us identify some of these modifiable risks and could help us really link what these particular exposures are doing to the mechanisms that are leading to, say, neuronal cell death and the mechanisms of ALS. And that gives us a therapeutic target.

I think we have to have an open mind as to what we consider a risk factor, and we have to follow the scientific evidence wherever it goes. So we need to explore whatever the risk people are trying to see in a certain population. So if it’s the military population, let’s dig deep, let’s try to understand those risks. If it’s chronic traumatic encephalopathy, I mean, certainly, there’s a lot of building evidence in certain professional athletes that ALS may be higher risk in certain sports. And we need to chase that down, but we need to understand these things scientifically because then, we can translate that into what changes can we make, whether they be lifestyle changes or other changes or other druggable targets that can be used to eventually prevent people from getting ALS.

🚩Highlight To Remember:
People should learn that the disease is very insidious and it requires approx. 40% of the motor neuron damage to start feeling the early symptoms.
🔴🔴🔴
TreatmentWe all know the real treatment which really follows the true meaning of this word is officially non-existent. The above ALSA banner communicates that clearly in the red frame (“There Is No Cure For ALS”).

So why do we use that word with ALS? It is weird as those drugs don´t treat anything. Instead they target something which is believed it can somehow disrupt the gradual pathologic and devastative process. It is strange how evidence based science is described with words from religional area (believe).

ALSA mentions those drugs but does not add much details – one can get those details from other sources, no big harm.

Riluzole (Exservan, Tiglutik)
Radicava Edaravone
AMX0035 (pending FDA)
NurOwn (pending FDA)

🚩What could surprise someone is following information:

How riluzole impacts disease at a cellular level is not fully understood. Neurons signal to each other via chemicals in the brain, called neurotransmitters. One type of neurotransmitter is called glutamate, which gives out an excitatory signal. [als.org|Tiglutik info]


Scientists believe edaravone protects neurons by capturing unstable molecules that damage cells. These unstable molecules, called reactive oxygen species, form when cells consume energy, and scientists think abnormal buildup of these molecules contributes to the neurodegeneration seen in ALS. [als.org| Radicava Info]


Bad Rating Clarification
Cure does not exist, but what is worse is the absence of some PLAN B, given all the knowledge about the disease. If imperfect ONLY few months life prolonging drugs can be suggested/recommended on the “first page” then similarly any experimental suggestions where some slowing effect can be expected (“or believed?”) could be given too. ALS.org fosters 🚩censorship🚩 here and that´s why we rate like we rate.
🟠🔴🔴
Table 1.2 – ALS Association, a critical review of its ALS description

ALS (Un)Explained

The information gap really exists and thus visitor of ALS Association website will NOT get the complete information. We will fix that in Part II but at this moment we can still emphasize the strange lack of any progress. Nobody is able to explain that but many people feel something is not right here.

Let´s suppose there is some average person who first heard about ALS in 90s, perhaps because of Stephen Hawking – nothing really detailed, just simple fact there is some pretty bad disease making the afflicted person paralyzed, Hawking´s pictures in his electric chair are iconic and easy to remember. Then this person remebers that around 2014 or so there was some crazy ICE BUCKET CHALLENGE, social media were flooded by funny videos (Bill Gates did that too!) and more than 200 million USD were raised by the global society, ordinary and empathic people. Our person, let´s say it is a woman, gets older and in 2022 her husband in 40s is diagnosed with ALS. She naturally expects that within those 25 years some progress and better outlook just has to be already reality, she stays positive but soon she is falling into despair. She realizes this whole thing hasn´t moved at all.

  • There is some ancient Riluzol drug from 1995 which is more a bad joke than anything what could be called „treatment“.
  • That Riluzol is sold in more forms under other names (Exservan, Tiglutik) but it is still the same piece of crap with bad side-effects promising incredible 2-3 months longer life expectancy.

    Please realize the same people claim 2-5 years is the average life expectancy with the diagnosis. This means this famous Riluzol can add 5% at best. Such 5% are nearer to statistical error than an unquestionable improvement (would need to be at least 4-times bigger).
  • Then there is second approved drug called Radicava Edavarone. It was FDA approved in 2017 but in reality it is even more ancient than Riluzol. It is 1980s drug originally developed for stroke treatment and it was re-used for the purpose of „treating“ (slowing-down) ALS. It does not work too and also has bad side-effects.
  • And that´s it in terms of medication, two ancient pieces of crap.
  • There is some third drug on the way called cryptically as AMX0035 but it has problems proving its value in front of FDA. The best case is again + few months of life.
  • NurOwn stem cell therapy with planned price 300,000 USD is also facing problems with FDA. It was refused first, but then the company found a bug in their statistics and restated the numbers are actually better! Stem cell therapy is not new in ALS and does not have greatest reputation (price/value), but who knows, this one can be good news but how quickly can this be sort out? How accessible it will be? Will insurance plans cover that huge price? For non-americans it is a bad luck anyway.

This woman does not give up and starts searching internet, reading ALS association website to learn at least something about the partial breakthrough/promising findings and related difficulties but her frustration and disappointment grows.

  • Genetics is mentioned since 1990s but the application of these findings is non-existing.
  • Science mentions some environmental triggers with no logic whatsoever, everything is claimed as fuzzy requiring more studies, in terms of real benefits for patients there is no promising theory, just nothing tangible …

Our brave woman wanted to fight for her loved husband but she does not see any way, she is missing any hope, despite tiny but still something worth trying. Even worse the medical representatives sometimes behave in not really professional way, she is not informed sufficiently, it all seems like ALS community is lost and abandoned. She has a feeling like the medical system has just buried her husband alive, right in the physician office.

Plan A vs Plan B

In case there is an urgent problem with unknown solution it is wise to approach it in two parallely executed ways. The plan which we could call plan A obviously is about discovering or identifying the currently unknown systemic solution while accepting it is a long run. This plan A is the strategic objective.

However due to problem urgency there needs to be something done even earlier. Usually it is some best-effort and far from optimal approach which howerer at least provides some benefit in  „better than nothing“ way. This should be plan B or a tactical objective.

If we map above into ALS problematics we can conclude the strategic plan A comprises deciphering of the underlying harmful processes enabling in turn devising effective therapy together with introducing preventive measures. If this plan A is met, ALS as a horrific incurable diagnosis would cease to exist. The expression „ALS cure“ is more or less naive imagination based on human historical experience with various drugs/pills but who knows – perhaps one day humans will be capable to devise magic drug or lotion which is all needed to recover from ALS.

In terms of plan B or the tactical and in short time available variant it is a bit more complex. What can we include? Obviously there are many things to do in order to simplify the life with the diagnosis, give patients and afflicted family advanced support (financial, logistic, professional care to provide relief to 24/7 carying family members). However we could also include those attempts to somehow slow-down the progression, improve the patient life if he suffers with pains, anxiety and psychologic problems etc.

This break-down can create impression that humans from some reasons allocated much more resources on the tactical plan B and there is very little done to work on strategic plan A. It is practicaly unthinkable that humans would not be able to move a single inch forward in plan A part of the problem assuming there is reasonable effort and support. In ALSR we are perhaps controversial but also quite strict – we simply don´t see any breakthrough, shift in terms of understanding ALS. It is even written on ALS.org website:

  • We don´t know what causes ALS …
  • Military personel at double risk of ALS from unknown reasons
  • Probably genetical factors play role together with some unknown combination of environmental triggers …
  • More studies need to be done to answer such questions …

We only see long periods of research and then delivery of really bad products which don´t work at all and which bring other problems like side effects. Due to that tactical sub-optimal nature, price and very small benefit it can result in counterproductive product. The objective even for tactical solution still holds, to improve life quality! If you only prolong life by 2-3 months (speculation more than hard stats) while negatively impacting the life quality via those side-effects then this whole effort could be worthless.

For the patient it is indeed free choice whether this medication is taken or not but from the perspective of the whole effort this can become problematic – too much effort put on solutions which don´t bring anything great, which consume most of the resources.

We can be wrong but our impression is that this is exactly what happened with ALS. We are optimists and we believe people can achieve amazing things if properly organized and motivated. From the fact that ALS plan A is apparently pending for several decades we logically deduct there is something really wrong in terms of organization, prioritization, resource allocation.

Question: How much of those 200+ million USD ended in experimental drug research, patient support (plan B) and how much was invested to real ALS deciphering projects, not trial & error down-stream pathways effecting drugs done in the style „let´s try to target this protein/biomarker and see how longer can the patient live“. In fact the time to market is very unfavorable for patients and these very slowly developed drugs perhaps even don´t meet the plan B objectives. What is it good for then? Inefficient and still slowly delivered?

This is how ALS fight is lead. Despite ALS.org informs about the progress using very positive expressions, it is a big disinformation. There is no such tangible progress. It is time to say it straight and start asking the right questions, then introduce changes. As we will show, it is not only about underfunded research.  

Odds Against Patients

Given the activities in the last few decades it all seems that medical science and official authorities reduced the ALS problem into solving a tough puzzle. First we should recall that the official perception is that ALS is a function of genetics and set of environmental factors which act like certain triggers.

ALS = f(genetics, env. factors)

Above functional prescription is valid for practically every disease including those trivial where cause or env. factor (like bacteria) is well known and disease is easily treatable. With ALS all seems to be very complex though and even slowing down the disease significantly (not by 5%!) is tough challenge for medical science.

The ongoing effort the scientists are focused on is to find answer on below two questions. How realistic and promising in terms of time factor is this approach, is left for judgement by the reader. Anyway it all looks like ALS patients could be waiting on a real breakthrough for another 20-30 years and still they won´t be provided with explanation and therapy they are literally praying for. Also natural question arises: How will science immediately help ALS patients if they find answer on question #1?

Scientific defetism is noticeable – they know they are doing it wrong and chances are extremely unfavorable.

Because theories for ALS development represent such a wide spectrum of potential causes, scientists are looking for aspects of lifestyle shared among ALS patients that might shed light on the way this illness develops. Excessive exposure to certain metals or chemicals in the workplace, repeated viral infections, smoking, and even strenuous physical activity and military service are all associated with increased risk of ALS. Various studies have confirmed an almost doubled risk of ALS among military personnel who had been deployed to various conflict areas across the world, leading the U.S. Department of Veterans Affairs to declare ALS a disease connected to military service. Researchers have also noted that ALS might be overrepresented among athletes, with Lou Gehrig being the most famous example.  But no one yet knows why these groups are at higher risk of getting ALS . With no reliable information about what might cause the disease, therapy seems out of reach for the near future​1​​​. [statements from 2015, today is almost 2023, 8 years and no change again!]

#QuestionComments
1Which genes and how exactly they contribute to development of ALS?Despite the Human Genome Project it seems people are still unsure how many genes we in fact have, more than 20,000? Regarding the exact function it is worse and regarding the whole DNA function it is even worse. Genes also aren´t static structures, they get activated/deactivated, epigenom factor as another layer of complexity is being explored and again people don´t have exact insight into this phenomenon.
Gene mutations identified often in ALS patients are confirmed differences from healthy people but there is no practical use of these more correlative than causative findings yet.
2What is that exact combination of environmental factors which can trigger the development of ALS?There are known risk factors but finding the exact combination (including amounts and time factors, other dynamic variables) leading to ALS is extremely hard task (and silly too!). It all seems everything in ALS is to certain degree individual and if we project this on individual DNA profile then this again makes that mission impossible. Not really sophisticated approach despite it pretends to make such impression. Simply not a good news even for ALS patients which will get diagnosed in year 2026 or even 2030. We are speaking about another 50,000+ lives which won´t be saved … Unless massive reaction and change in paradigm come in
Table 1.3 – Questions illustrating the long term effort to explain ALS

Part II – Alternative Success

Ressurrecting Awarenes Project

As we explained in Part I. the global awareness projects still live but they are stumbling and stagnating. The main reasons of the additional lack of momentum were also provided. It all is about absence of further explanations, perspectives which would revive the initiative by comprising masses which is in huge contrast to the current version only calling for help and attention for tiny, unlucky and with deadly disease afflicted fraction of the population.

After reading this post you should get a sufficient information (including further directions) and hopefully also good understanding on how every person can help ALS community – and in turn inherently help also himself/herself, help everyone else.

Filling The iGaps

In this section we will address the main problem which is blocking the progress in ALS fight. As we already know the official version of ALS is strange, not fully transparent and from some reasons it accents some problem areas while neglects other. We could also suspect why is this happening and where is the logic – if the shift can be more and more put into genetics it is literally suspension of the progression, it is a good safeguard nothing big will come soon. Everyone can verify this – blaming genes is nice but how will it help ALS patients? This is simply the status quo strategy.

On the other hand those very likely and heavilly contributing factors are neglected – ALS Association gave infections few miserable lines, while giving pages of space to all those genes. Similarly other environmental factors are neglected (metals, chemicals, radiation) without any credible counter-evidence.

The alternative and independent camp where ALSR initiative belongs has quite a different version. Here it is good to admit that there are some alternative groups which are not helpful and often are harming the rational wings of the opposition. As pointed out in the yellow warning box at the beginning of this post, this information is not about highly unethical herbal cures etc. Our approach is also science based but since we are independent we offer fully transparent, logical and different version of ALS.

Official sources are still searching for the hidden ALS factor and surprisingly, they are unable to find it so far. What if there is no such hidden ALS factor and all needed was already discovered? This would move the ALS problem into next stage right away – from BASIC RESEARCH to INTERPRETATION. This is actually very good approach as it has unifying property – we are not coming with something entirely new, we cannot be given primitive pseudoscience labels if we comment the same scientific works or sources in general as the official authorities. The base layer is common to both camps. We only interpret obvious facts differently and since we follow fundamental logic, while officials violate it, it is quite obvious who has better chance to reveal the truth. Let´s go!

Environmental Factors/Causes

Ooops, what happened? Any difference spotted in the section title? Environmental factors or triggers are in fact the causes? Oh no, that is so simple and weird, right? No, this is the first simple trick we need to do if we want to be in line with logic (and we want to!). Let´s formalize these factors/causes in table, the link to the list given earlier should be clear to everyone.

IDRisk Factor/CauseNote
1SmokingMore smoking means more ALS.
2Exercises/Intense ExertionMore exercises means more ALS.
3Warfare/Military ServiceMore warfare and service exposure means more ALS.
4Toxic MetalsMore toxic metals means more ALS.
5Toxins (incl. BMAA), solvents, chemicals (including drugs)More other harming chemicals means more ALS.
6RadiationMore radiation means more ALS.
7PesticidesMore pesticid exposure means more ALS.
8InfectionsMore infections, even the common ones, still means more ALS.
9Chronic emotional stressMore stress means more ALS.
10Improper Diet, Food habbitsMore unhealthy and industry processed food means more ALS.
11EthnicityIf white/caucassian human then more ALS.
12Genetics – InheritanceMore chroinically ill (not just ALS) ancestors more ALS.
Table 2.1 – ALS Risk factors, in fact causes, revisited

When looking at above table 2.1 one can notice couple of changes. We have provided a list with some additional items and commented each in a strange „More ALS“ way. This looks scary. Let´s again recall that science is desperately searching for some NEW REVOLUTIONAL AND STILL UNDISCOVERED ALS factor – perhaps some molecular phenomenon etc. which will finally explain ALS, something which will be a true Eureka moment from which things start rapidly moving to the glorious victory and conquering the most brutal & horrific disease in the world. There are people who trully believe in this!

How long will ALS patients need to wait? It also depends on YOU! Eureka moment behind the corner …

In ALSR we are controversial but also not the dumbest people on planet Earth. That´s why we see things as they are and can educate everyone here – that revolutionary factor is nothing new, it exists, it is known for a long time and it is even a target of one ALS drug (but without success; drugs are often poorly designed). However it is being neglected, underrated and not described to public sufficiently loudly. Please take a look at the same table but enriched with another two columns (Table 2.2).

  

IDRisk Factor/CauseNoteShared FactorDNA Effect
1SmokingMore smoking means more ALS.Causes oxidative stress, promotes neuroinflammation.Toxicity can harm DNA, promote mutations and compromise immune system.
2Exercises/Intense ExertionMore exercises means more ALS.Causes oxidative stress, promotes neuroinflammation. 
3Warfare/Military ServiceMore warfare and service exposure means more ALS.Causes oxidative stress, promotes neuroinflammation. 
4Toxic MetalsMore toxic metals means more ALS.Causes oxidative stress, promotes neuroinflammation.Metals can harm DNA, promote mutations and compromise immune system.
5Toxins (incl. BMAA), solvents, chemicals (including drugs)More other harming chemicals means more ALS.Causes oxidative stress, promotes neuroinflammation.Chemcials can harm DNA, promote mutations and compromise immune system.
6RadiationMore radiation means more ALS.Causes oxidative stress, promotes neuroinflammation.Radiation can harm DNA, promote mutations and compromise immune system.
7PesticidesMore pesticid exposure means more ALS.Causes oxidative stress, promotes neuroinflammation. 
8InfectionsMore infections, even the common ones, still means more ALS.Causes oxidative stress, promotes neuroinflammation.Viruses can harm DNA, promote mutations and compromise immune system.
9Chronic emotional stressMore stress means more ALS.Causes oxidative stress, promotes neuroinflammation. 
10Improper Diet, Food habbitsMore unhealthy and industry processed food means more ALS.Causes oxidative stress, promotes neuroinflammation. 
11EthnicityIf white/caucassian human more ALS.Makes someone more vulnerable to oxidative stress (surprisingly white people are most vulnerable) 
12Genetics – InheritanceMore chroinically ill ancestors more ALS. Sensitivity to oxidative stress can be passed through gradually weakened ancestor chain.

Similarly infections are passed through the ancestor chain, mainly mother-child path.

Table 2.2 – Building the ALS Context

Isn´t it strange to replace all those misleading and vague official statements:

  • It is not clear …
  • We are not sure what exactly …
  • Cause of ALS remains unknown …
  • It is unknown why military service presents double risk of ALS …
  • There is no evidence microbial infection causes ALS …

with a simple absolutely logical and unquestionable three core aspects linking conclusion?

Since all the three aspects (oxidative stress, DNA damage, neuroinflammation) are nothing really new, it can be still hard to believe there is a breakthrough moment here. After all, aren´t all those researchers working hard on deciphering these aspects so that ALS can be finally effectively cured and prevented? Sure they are, as we summarized their effort using two simple questions in table 1.3 along with the estimated chance they will come up with anything real soon.

The way science informs about all thee aspects should be „red alert“ warning for everyone though and we are going to add much more of true controversy yet!

Homeostasis, Oxidation, Reduction and Oxidative Stress

Oxidative stress is indeed mentioned in ALS problematics but not so intensively on ALS Association website. If you start reading the website you will not encounter that immediately – but you certainly will encounter genetics and genes right away. What is this oxidative stress?

Well, nobody needs Phd. in biochemistry to get a very basic understanding of what oxidative stress is about. Luckilly we live in the age of information where practically anything you would like to know or get explained has its YouTube video(s). We will give you couple of links later.

In nutshell, our body or we as a living organism are just molecules and atoms. Thousands and thousands chemical reactions on molecular level are taking place every moment within our body. In order to be healthy we need to maintain equilibrium in many aspects and on many levels. There are some exclusively damaging factors which have no good function in our organism but mostly it is about the right amounts, right homeostatic levels. Homeostasis is just another term for equilibrium/balance. In ALS there is quite a few examples of broken equilibrium which in overall results in those mystical motor neuron devastating processes.

For example excessive glutamate levels or broken calcium equilibrium, mainly in relation to magnesium (healthy ratio). Both these examples are responsible for muscle twitches/fasciculations, cramps which ALS patients experience. Here again science explains that to people in misleading way – completelly inverting cause(broken equilibrium) and consequences (overexcitation leading to neuron death). Neurons in ALS die as a result of many factors but this particular one (neurotoxicity, overexcitation) is quite straightforward. Those involuntary muscle twitches are so infamous in ALS – poor neurons are hunted down to death, unable to withstand that permanent ingress stimulation. Please don´t be surprised that you are not told the whole truth and mainly the bottom line of everything.

Another examples of broken equilibrium in ALS patient is corrupted acido-basic homeostasis and also the immune and endocrine system seems compromised. This already sounds scary, right? Well, it should, because problems in these fundamental systems can lead to ultra serious health issues like cancer but also plays role in the devastation of neural tissue in spinal cord (ALS).

There is one very generic factor which can cause many of the prior mentioned disbalances and it itself is a kind of disbalanace. It is another broken law but already super-critical. If it is broken, your body can be literally slowly disassembled piece by piece on molecular/atomic level. It is a chronic and long-term oxidative stress as a result of broken balance in oxidative and reductive reactions. The stress itself is expressed by high amounts of so called free radicals in the organism. These free radicals are molecules with unpaired electron and thus they are going to react with anything – to obtain that missing electron somewhere, whether from unlucky bacteria or piece of your own tissue, for example cell like neuron etc.

The problematic aspect of these free radical molecules is they generate harmful chain reactions. If they steal that missing electron somewhere, it means that some binding was broken and now „someone“ different is missing that lost electron and will again seek for that in relatively unpredictable way leading to another break-up of some chemical binding etc. Obviously in healthy organism such harmful molecules are quickly neutralized or cause only minimal damage. However ALS patient is everything but owner of healthy organism.

Those unquestionable empirical stats tell us this ALS diagnosed person was exposed to high sources of free radicals for a long time and thus the organism lost the ability to fight them efficiently – it is overwhelmed and thus weakened as the damage is incured on many places giving rise to microinflammation etc. This gradual shift out of homeostatic state is highly individual and explains that big diversity across ALS patients but the common aspect is the same: excessive amounts of free radicals harming everything in more or less unpredictable way.

Given the way medical officials inform, above description can sound weird and untrustworthy but we will compare the already known low level ALS findings with those general effects of excessive amounts of free radicals and not only that – we can even track them up, back to those factors which science calls risk factors/triggers while we call them causes. ALS mystery where people are sent home from physician offices with no real explanation, just with „I am sorry you have ALS“ (check the above shown FB screenshot again!) is being deciphered to great extent.

But for now you should really spend some time by learning about oxidation, related stress and also big problems in our modern world (industry etc.).

LEVEL 1 – Dr. Berg is a good introductor to the oxidative stress problematics. Please watch thoroughly and notice the toxic lifecycle through food chain. Also look thoroughly at the image before playing the video – what do you see? 😉

LEVEL 2- Dr. Rabiull Haque is another recommended teacher we chose for you. His Teddy bear anti-anxiety approach can keep you listening! 😃

LEVEL 3 – Glutathione cycle explained including possible problems if prerequisites are not (fully/stably) met.
We understand not everyone will watch YouTube for 60 minutes, especially when it is about non-trivial knowledge and even some equations of chemical reactions are mentioned. That´s why LEVEL 1 and short intro from Dr. Berg is the most accessible and he has more of it!

Those braver who will continue with those additional two videos, could notice those in ALS familiar key words like following:
DNA damage, superoxid dismutase, A.C.E vitamin importance, glutathione, N-Acetylcysteine etc.

Neuroinflammation

Free radicals can cause damage and thus logically inflammation at arbitrary location which means it inherently can cause also neuroinflammation when it occurs in CNS. What is interesting is that recently scientists had even HARD TIME to believe immune system and inflammation, or better chronic inflammation and thus immune system role, is a major issue in ALS. This is hard to believe for laics, as practically any damage happening in the organism means inflammation. Just suppose that we are in Jean-Martin Charcot times in 19th century and we just identified those ALS patterns for the first time in human history – by examining the dead people we would be shown that strange „hardening/tissue damage“ in spinal cord – a signature finding for ALS which also gave the disease its little bit obscure name. What else than inflammation can cause such thing (sclerosis, tissue scarings)? Even today it is still subject of discussions. However the question should have always been different – WHY THERE WAS THE INFLAMMATION WHICH RESULTED IN THAT TISSUE DAMAGE? WHAT CAUSED THAT?

Obviously microbial factor was highly suspected as bacteria and viruses can infect the specific cells of CNS and cause serious inflammation leading to paralysis or death. Unfortunately this hypothesis was never proven, despite it was indeed revived occassionaly and then again denied. Last 30-40 years scientists from some strange reasons speak mainly about genetic defects or some toxic proteins (TDP-43) harming motor neurons, but something as logical as infection is not a big topic.

On below video you can get another explanation from Dr. Appel and you can notice how he is stressing the discovery that neuroinflammation actually exists in ALS, that it has chronic nature and he and his team attempts to help ALS patients with infusion of specific immune cells (TRegs) which are supposed to regulate that ongoing immune response.

Not surprisingly, even this doctor is not interested much in what usually acts as a trigger of inflammation. He shows some of these factors we already mentioned but where is some virus or bacterium? It seems like with ALS it ceased to exist, the most sick people who were exposed to damaging chronic oxidative stress more than others so their immunity is compromised, seem like they are free of microbial enemy. Although repeated infections are registered as “risk factor”. Can you believe it? This is another crazy narrative the official authorities present to ALS patients, the whole ALS community and also the general public.

Low-level ALS findings

Below table summarizes those findings science has made about ALS. It is compiled based on Dr. Bedlack summary – so thanks Richard! We can notice that it is 10 rows/items and despite our generalized cause called oxidative stress is the common thing to all those unquestionable empirically identified ALS factors (or causes!), here Dr. Bedlack just lists that in sort of degraded, one out of many way. Is that an obvious mistake or an obvious attempt to camouflage the root cause by dissolving it in the flood of all those scientific terms and abreviations for proteins, genes etc.?

Also where is any mention of suspected role of infections, common findings in ALS patients which could indicate a microbial part of the problem? It is not listed here at all, but Dr. Bedlack at least mentions HERV viruses and microbiom factors in his presentation later.

IDLow-Level Finding DescriptionSource
1Nucleosytoplasmatic deffectDr. Richard Bedlack
2RNA metabolism and RNA binding proteinsDr. Richard Bedlack
3Failure of proteostasis (protein misfolding, aggregation)Dr. Richard Bedlack
4DNA repair (TDP-43, FUS, NEK1)Dr. Richard Bedlack
5Mitochondrial dysfunction and 🚩oxidative stress🚩Dr. Richard Bedlack
6Oligodendrocyte disfunctionDr. Richard Bedlack
7Microglial dysfunctionDr. Richard Bedlack
8Cytoskeletal disturbance and axonal transport deffectsDr. Richard Bedlack
9Vessicle transport deffectsDr. Richard Bedlack
10Excitotoxicity (EAAT2) – Glutamate neurotoxicityDr. Richard Bedlack
Table 2.3 – ALS low-level findings

Environmental Causes Revisited

When we have basic understanding of oxidative stress and what unpredictable and highly generic damage it can make and after getting a list of those BIG PROBLEMS (table 2.3) science identified in ALS patients we can look again at those earlier summarized environmental causes.

For normal people it is much more convenient to explain things in higher layer terms than using those cryptic scientific terminology – again not really surprisingly the science is not really trying to establish this mapping transparently and rather chooses their language. These guys talk about TDP-43, SOD1, P53, C9ORF72, RBP metabolism, axonal transport defects, excitoxicity or cytoskeletal distrubances. Why do they think it is helpful to talk to ordinary people using this language? Well, who knows, but they indeed think, that this makes them experts and authorities.

In reality they are unable to think systematically, creatively and what is even worse – they are reluctant to trace things up and establish experimental comprehensive theories. This is quite a red flag, because that´s what other scientists usually try to do. It almost seems like they really want to succeed only in their own way and that´s why they ignore others.

For example there is ALS project called AnswerALS. It claims it is an open initiative which exposes valuable ALS data in a free way so that any research or data science team can take a look and try to contribute – all for the patients, all for beating ALS finally. But what it is good for, when they are unable to respond to e-mail query?

As one can see (image above) they claim they provide high-quality clinical data (among other data) but when we emailed them with a query on that, what do you think happened? Yes, nothing, no response whatsoever and those high-quality clinical data are quite primitive and far from rich data which must exist somewhere. Obviously those data should be stripped of any personal identifiers etc. Data analysts are certainly not interested in knowing the persons, but they need maximum information in the clinical data category. As of now, the project stopped providing data (temporarilly as per the message).

Clinical data is a collection of data related to patient diagnosis, demographics, exposures, laboratory tests, and family relationships​2​.

This project has indeed some nice proclamations but we are not clear how well they put them in practice. It would be very interesting to have rich data for thousands of real cases with respect to below exposures (and ideally much more), but for now we need to work with data and studies available.

The numbers in form of (#) are just pointers (row index) to the tables 2.1 and 2.2.

Genetics (#11, 12)

Here we focus on something as simple as ethnicity, because this simple attribute seems to play a role in ALS too. It is known that significant majority of ALS cases are white people cases. Therefore it is a signal that white race is more sensitive to ALS than black race. The ratio is substantial (75% white people). If we map that back to our suspected root cause (oxidative stress) it seems white people are simply more endangered. More details on ethnicity factor can be obtained here​3​.

Also the existence of familial ALS cannot be ignored. If such a rare disease occurs within a family it can be about two main aspects. Passing heightened sensitivity/intolerance to oxidative stress through genes but also sharing the environmental aspects with ancestors, including certain type of infections which can be dormant/latent for a long time but can get reactivated at some specific moments (high stress, weakened immunity). It would be interesting to know what all is shared by family members in FALS cases. The existence of sporadic ALS in ratio 9:1 with respect to familial ALS should be little bit calming for everyone who lost someone to ALS. These additional factors are simply much more important than those genes mentioned everywhere and all the time.

Smoking (#1)

This aspect is widely known and overall risk increasing regarding practically any chronic disease. Why? Because it contributes to that oxidation/reduction disbalance and oxidative stress​4​ is suspected as a main factor for 200+ chronic diseases. Smoking simply is voluntary intoxication which, dependening on the intensity, adds lot of negative points to the person overall health score. Someone develops cancer, someone else can develop ALS (if other highly suspected factors join in).

Sport & Intense Exert (#2)

This is widely known and very sad finding. Sport and being active is considered healthy part of good lifestyle and when person in great physical shape receives ALS death penalty, it is just hard to grasp it, it is unfair, it seemingly does not make any good sense. We should add that being active is indeed health promoting and this statistical ALS finding is just a very special and puzzling fact. As we know science only repeats phrases „it is not known why“ but this is obvious lack of honesty and transparency.

In reality high physical exert inherently causes heightened oxidation and thus automatically contributes to oxidative stress. Exercises contribute to micro-injuries, often a desired effect like in body building (repair & muscle grow cycles) but further stressing the already stressed organism even with just regular running (few miles etc.) can really harm the organism because of the link between endocrine and immune system – such sport activity can present load and weaken immune system. If it occurs repeatedly without proper resting it amplifies all problems including those hidden. If the sport is very demanding, aggressive, the risk increases. American football (NFL) is a good example.

Part of this are also injuries which escalate the slowly developed program – everything can get quickly accelerated. The adrenaline factor, the inflammation (e.g. swelling) and also repeated XRays are all contributing to higher oxidative stress.

It is mainly that stealth property which is most frightening regarding ALS. However our organism is always sending some warning signals ahead. The problem is that people are bad interpreters of these signals and their interests are different. They repeat the same mistakes („fatigue, it is nothing, last time it disappeared after 2 days, let´s go!“). Not everyone is so ignorable to body signals as was Lou Gehrig but his story should be the most enlightening for everyone.

To summarize it – be careful, perceive body signals and be aware of the link to oxidative stress​5​, immunity. Hidden infections can get more living space than desirable as a result. Same applies for usual long term chronic stress – the cases of people who lived stressed life, who were carying about deadly sick parents (emotional exertion!) and were later diagnosed with ALS are unfortunately very well known.   

Toxic Metals (#4)

Exposure to toxic metals is also registered as a certain link to ALS. The ALS Association does not inform about it transparently and even neglects the importance,  but the reality is different. Why? Because of the obvious link to oxidative stress and not just that.

Many investigations of heavy metal exposure, particularly lead, and including mercury and manganese, have been looked at as risk factors for ALS. A positive association between past 🚩exposure to heavy metals and risk of ALS has not consistently appeared across studies🚩. These studies include occupational exposure that epidemiologists often use as a surrogate to assess potentially toxic exposures. Many of the studies relied on self-reporting by questionnaire. Self reports can allow a recall bias–I have this disease, what did I do to produce it– that has the potential to artificially inflate the data​6​.

We informed about the danger certain metals can present for human health in previous posts. Picture is worth many words so to factualy support our core oxidative stress cause theory we borrow image from the scientific paper​7​ we cited before. Anything familiar when recalling Table 2.3? We are having strange dejavu …

Also strange case which pointed at heavy metals as highly suspected ALS factor happened in Czech Republic – former prime minister, later diagnosed with ALS, did lots of special lab tests which confirmed high levels of heavy metals in his body, surprisingly all were exactly those highly linked with ALS (mercury, cadmium, arsenic).

We informed about this here:
https://chronicdiseasesdemystified.com/2022/08/10/als-xt-czech-supportive-trace/

Mercury RED ALERT (#4)

Use of mercury in medical care has insane history (Blue Mass; alleged syphylis treatment in 18th century). People soon realized this dangerous metal has no therapeutical significance but has serious damaging effect, mainly on nervous system. Anyway century later another use of mercury in medical care caused excited discussions – the use of mercury containing dental amalgams in dental care. In the United States this dispute is refered as Amalgam Wars. At the end money and irresponsibility prevailed and this toxic metal was accepted as the defacto standard in dental care. Even today, in year 2022 people have amalgam fillings but they are gradually being replaced.

Replacing of these fillings is relatively risky action (dentist dependent) and the danger of slow release into the organism is not ZERO. Mercury exists in gas form and inhalation of vapours is known problem. In Europe many countries already announced amalgams phase-out. What does that mean? It is a confession that it was mistake to ever introduce it in past, if human health is priority, not financial and other practical aspects. But mercury is not a typical oxidative stress causing metal like iron. It can accumulate in fatty tissues like brain, nervous system and harm neurons by gradual impairing and shortening the axons (again recall table 2.3, axonal transport etc.).

If you read about the controversy, heared both opinion camps you can get confused – who is right? Obviously if it was super dangerous and caused acute states it would be abandoned long time ago. But chronic diseases often develop for decades and that´s why mercury question is a matter of common sense. Please watch below short video and judge on your own if you think there is no way how mercury from your teeth can harm you in the long run.

Teeth health data, timeline of interventions need to be part of any seriously meant ALS clinical data. Is that a reality?

Pesticids (#7)

These harmful chemicals used mainly in agriculture are another reason behind the explosion of various chronic diseases and there are traces for establishing link with ALS development. When we get only very rough information on what all pesticids can impact in human organism we should not let anyone to neglect naturally arising health concerns. The food chain is heavily impacted and it is a massive and global problem. Similarly as with mercury containing amalgams, people also learned the use of pesticids should be regulated to minimum if not forbidden right away (problem with food mass production, intensive agriculture).

Today „BIO“ brand, sometimes misused (cheating) is basically indicator that the vegetables or fruit should actually be produced in natural pesticid-free way. People are realizing that before introducing BIO labels, they were fed with food of problematic quality. Well, that is evolution, people are always learning what to avoid, after realizing related risks – but sometimes it takes time! In terms of link to ALS we should be mainly looking at the long-term effects of pesticids and it again is a good hit – but as with everything in ALS, it is just a trace, not a decisive factor/cause, which is understandable due to complex and multi-factorial nature of ALS.

We should always recall the table of all those low level ALS findings and link it with hormonal or enzymatic deffects which need to be first caused by SOMETHING. PesticideReform website tells us following.

Chronic health effects include cancer and other tumors; brain and nervous system damage; birth defects; infertility and other reproductive problems; and damage to the liver, kidneys, lungs and other body organs. Chronic effects may not appear for weeks, months or even years after exposure, making it difficult to link health impacts to pesticides.​8​

Endocrine disruptors are chemicals that — often at extremely low doses — interfere with important bodily functions by mimicking or blocking hormones (the chemical messengers that circulate in blood and regulate many body processes including metabolism, brain development, the sleep cycle and stress response). Some pesticides act as endocrine disruptors and have been shown to cause serious harm to animals, including cancer, sterility and developmental problems. Similar impacts have been associated with human exposure to these chemicals​8​.

We can close this short overview with providing a link to our umbrella factor oxidative stress.

Pesticide-induced oxidative stress is caused by both reactive oxygen species (ROS) and reactive nitrogen species (RNS), which are associated with several diseases including cancer, inflammation, and cardiovascular and neurodegenerative diseases. ROS and RNS can activate at least five independent signaling pathways including mitochondrial-induced apoptosis. Limited in vitro studies also suggest that exogenous antioxidants can reduce or prevent the deleterious effects of pesticides​9​.

Radiation (#8)

This is another interesting factor and it again is officially neglected. Let´s cite ALS Association again.

As well, no consistent associations with ALS have emerged from investigation into the potential role of radiation and electromagnetic fields​6​.

However what tells us the reality and common sense? First very naive experience which definitely is not of scientific evidence class finding. Since we read about tens of ALS cases it already presents certain intuitive database of ALS stories. Now if we stick to the official data which say ALS is diagnosed in 2 people out of 100,000 then any rare and not so common aspect shared by ALS patients becomes interesting and perhaps even suspected aspect. We recall few patients with ALS who had potential long term exposure to certain safe source of radiation. For example XRay machine service/technician or those soldiers in US Army – the highest risk is registered for air forces where pilots spend considerable times in high altitudes where ionizing radiation is stronger than on the surface. It is a relatively weak link but with such rare occurence of ALS a trace to not be neglected in ALSA fashion.

The reason is that here again we cannot speak about major/decisive role of this factor. The problem is that radiation is another big source of oxidative stress. Human body is composed from watter (60%) and radiation energy going through the body forms dangerous ROS, mainly hydroxyl and hydrogen peroxide free radicals. The dose individual people absorp is very different and nobody measures that. Besides omnipresent natural exposure people get some low doses from XRays (injury, dental care again, disease diagnostics) or when traveling where XRays are used too (luggage screening, full body scanners, dose obtained during the flight). We all are assured these doses are extremely low and safe but they are not zero so at least some additional micro-damage can be received. Obviously there is no reason to panic but certain cases like the man diagnosed with ALS, who travelled really a lot and installed/serviced XRay technology around the world is a bit disturbing and there are also other cases of XRays technicians later diagnosed with ALS. Together with AirForce pilots this is worrying finding.

We should not forget that people had to learn about the harmful effects – as usually, in a painful way. Those first XRay physicians often died on cancer and the devices were gradually improved, the amount of XRays lowered, exposure time lowered but it still needs to be regulated.

X-rays were discovered in 1895 and since then much has been written about Wilhelm Roentgen and the events surrounding the discovery. However, there have been only scattered references in the literature about the early workers who dedicated their life, and death, to X-rays. Radiology has come of age since then. Large exposure times have been reduced to milliseconds and there has been a change from analogue to digital. The advent of new and rapidly developing modalities and the ubiquitous presence of cone beam CT (CBCT) highlight the need to remember the early victims of X-rays, especially with the lack of universal guidelines for taking a CBCT scan. The aim of this article is to alert the oral radiologist to exposing patients irrespective of need, and to pay respect to the victims on the 116th anniversary of the discovery of X-rays​10​.

Another interesting trace is that there were two bigger ALS clusters registered in the world. One in Japan and one in Guam (Pacific Island) – both these bigger regions were hit by radioactive fallout from nuclear bombs and the timing fits that. Science would deny this connection right away, there are some studies and nuclear fallout measurements were done on Guam, still we are very concerned. First we do not trust science entirely – you will understand after reading Part III. Second, while we don´t claim Guam ALS form was caused exclusively by those huge nuclear tests conducted on only 1900 kilometres far atols, we suspect radiation and radioactivity as a co-factor due to its inherent oxidative stress inducing capability.

The Guam ALS form was especially analyzed as there was a rationally heightened hope to have better chance to find ALS cause in such an isolated environment (small Pacific island). The BMAA toxin theory which we mentioned in Part I (due to the mention by ALS Association) was the alleged cause or major contributing factor identified. However the controversy appeared later – it was found out the scientist who came with this theory after conducting tests on monkeys was using extreme amounts of the toxin far from realistic and acceptable amounts wich could explain the ALS occurence. The problem is that those native people were not that dumb, they knew how to prepare their food for centuries. Then during few decades overlapping with decades of nuclear tests they started having health problems, similarly as thousands of people in the whole Micronesia, mainly thyroid cancer.

Of all the molecules reported to have toxicological effects, BMAA (beta-methylamino alanine) stands out as having the most checkered past. In the late 1960’s it was reported to be a toxic component of the cycad flour consumed by Chamorros on Guam which caused the high incidence of amyotrophic lateral sclerosis (ALS) in Guam, that was associated with a Parkinson’s disease-like dementia complex (ALS-PDC). However, because ALS-PDC is a slow onset disease, manifesting itself as long as 30 years following exposure to the putative neurotoxin, and only acute toxic effects of BMAA were observed in animal studies, interest in BMAA waned. A seminal study by Spencer et al., in 1987 showing neurological impairments with long-term BMAA-fed monkeys revived the hypothesis that BMAA could cause ALS-PDC. However, the amounts of BMAA used in that study were viewed as being the equivalent of a person consuming their body weight of cycad flour every day. Again, the BMAA hypothesis was discarded​11​. 

In ALSR we are very reserved and we even consider those official efforts as potential cover-ups of the problem. It is very in line with all those other untrustworthy explanations. Common sense needs to sometimes question even alleged scientific findings, mainly if trust and risk of rigged research is not that low. Despite the theory was discarded, our strangely informing ALS Association mentions that as the first factor without any reflection on the theory denial (environmental factors)
Everyone is asked to judge this on his own though.

Infections (#9)

The question of microbial infections in relation to ALS is a very interesting and also extremely controversial. First let´s check ALSA source.

A recurring idea about environmental influences on ALS is that a virus is responsible for the condition. Polio virus, for instance, infects motor neurons and can at times lead to a weakening condition called the post-polio syndrome years after the initial infection. Scientists have considered viral infection for many other disorders of the nervous system, from schizophrenia to multiple sclerosis, as well as for ALS. A concrete link to viral infection has never been documented in any of these diseases. More recently investigators published on the potential association of retroviruses with ALS. This is being further explored​6​.

Incredible eight line space dedicated to such a rich and complex microbial phenomenon, but we are not surprised. It is also very misleading as MS link to EBV is already confirmed. Above cited paragraph including its heading is fully devoted to viruses only but bacterial infections including those advanced where blood tests are more a roulette, which are capable of resisting ATB protocols and evading immunity are not mentioned at all.

People usually perceive infections mainly in acute form but once we switch to the chronic mode it becomes extremely complex. Regarding ALS the main issue is not about being unable to detect any dangerous „bugs“ in ALS patients but rather about being unable to choose which type of known and in ALS patients detected “bugs” (bacteria, viruses) could be the main player responsible for the disease development. This could be kind of 🚩BREAKING NEWS🚩 for some people, who think ALS has nothing to do with infections and consequent immune response. The public is fed with statements where the ALS cause is unknown but infections are strangely and upfront practically eliminated and mainly those genetic and toxic protein factors are emphasized. Obviously this is naive and highly unlikely. We could write whole series of articles for covering this area in sufficient depth so let´s briefly describe just some examples in tabular format below.

#TYPE OF INFECTIONAGENT NAMENOTES
1BACTERIALBorrelia Burgdorferi and other spirochetal strains.Term Lyme Wars is known already outside United States too. Big disupte. Sick patients Vs incredible and financial interests defending CDC/NIH + insurance companies and pharmaceutical business. Political pressure. That´s the Lyme controversy.   From medical point the link is simple – those dangerous pathogens, you know what (neuro)borreliosis is right, are reliably detected in  ALS patients, despite their Lyme diagnosis was ruled out during their unfortunate journey through the medical system.   Those instititutions defend their positions and inform everywhere that Lyme link is ALS myth, that only insignificant number of patients had positive tests – well, those tests are crap, and later examination of CSF often proves presence of the bacteria. Mattman and others confirmed practically 100% presence of active spirochetal infection in ALS patients no matter what untrustworthy authorities claim.   Absolute failure of medical system as a service for sick people– but if you read to the end you can get better view into this problem. Total controversy and scandal which still hasn´t reached its peak.
2BACTERIALMycoplasma strainsAgain known to be found in ALS patients reliably and as usually with ALS, more frequently than in the control sets (healthy people). A study aimed on Gulf War veterans revealed all but one had some mycoplasma strain – who knows what else they had, whether officially detected or not.
3BACTERIALRickettsia strainsSimilar situation as with mycoplasma. These small bacteria can target CNS, cause chronic neuroinflammation and were again detected in ALS patients. All these bacterial infections have common aspects – they can infect CNS, they can become kind of stealth and chronic completely confusing physicians and they all induce the activation of nuclear factor-kappa B which results in pro-inflammatory response and neuroinflammation.
4VIRALHERVViruses whose DNA/genes are also part of human DNA – pretty weird, right? As per the literature they should be capable of targetting motor neurons. Studies confirmed higher presence in ALS patients but then again – studies ended with controversy, follow-up studies allegedly with changed methodology did not find anything, did not confirm previous results. Case closed.
5VIRALVarricela Zoster, herpetic virus (HHV-3)We suspect ALS is a superinfection – patient usually has more infectional agents in chronic, reactivated and hard to detect status. VZV causes blisters, shingles, chickenpox. Based on same cases and early PNS problems (limb onset) we suspect stealth reactivated VZV infection can be part of the ALS neural system devastation. VZV is known to survive in peripheral nervous system. Blisters which nobody explained had Lou Gehrig and many other later diagnosed ALS patients.   There are advanced VZV states where certain people undergo extremely tough sick states, while for majority such viral infection is not a big problem.
6VIRALEBV and others, the „herpes gang“Epstein-Barr virus, HHV-6, HHV-7 and possibly HSV-1 and HSV-2 all can basically play role in ALS. Its role in MS is known for a long time but only recent study in US Army confirmed EBV as MS cause. Problem is these viruses are so common that practically everyone has antibodies. EBV complement (C3) interactions can also contribute to axon damage observed in ALS as C3 suppresses axon growth according to some works.
Table 2.4 – Selection of some of the suspected infectional agents in ALS

On below images you can see John´s arm. His mother had decades spanning problems which resembled chronic Lyme, however then she developed real ALS and passed. Later John ran into very similar problems, after few attempts with unhelpful doctors, he formed his own desperate and extreme treatment based on natural antibiotics and immunity boosters. After roller-coaster experience full of all possible symptoms and pains, he developed blisters and bruises (like Lou Gehrig) and gradually fully recovered – now he is back in shape, founding member of ALSR. He documented everything so his wounded forearms where he felt neurological discomfort for some time (including muscle between thumb and index finger) can be shown in this way. 🤢.

As we can see there is lot of HIGH PRIORITY work to be done with respect to examining ALS patients from infectional agents point, and mainly, even if there is no main suspect, the obvious effort has to be about eliminating every type whether marginal, co-factor, opportunistic. Since certain immunodeficiency in ALS patients is suspected comparison with healthy people does not guarantee anything. Everyone in the post-covid age should understand that – one person does not feel anything, other person is dying while choking in the hospital.

How would ALS patient feel, if he was informed that he/she tests positively for numerous infections, and is not treated at all, just because the physicians were not sure, which infection is the most damaging and ALS explaining? Or that he even was not tested properly and his/her ALS is in fact misdiagnosed and untreated neuroborreliosis?

This can become soon a reality because the assumption, that viruses and bacteria which can form cysts, L-forms, biofilms and completelly evade immune response, do not play any role in terribly sick ALS patient, is not only irrational, but there is also no scientific evidence for it. Instead there are many studies confirming the opposite is most likely truth and only that big diversity among patients (personal mix of infections, other environmental loads) can present another layer of complexity which today science is unable to cope with well.

In terms of oxidative stress infections again are big factor. Some bacteria themselves produce already oxidative stress causing free radicals and all of them cause local oxidative stress indirectly just with their presence – they stimulate immune system to produce ROS with a goal to fight them.   

Please check following works for more details​12–17​.   

It was once published that amyotrophic lateral sclerosis (ALS) was probably a form of Lyme disease,[3o] but the possibility was discarded upon discovery that many cases lack circulating antibody to the spirochete . Now it is know that severe cases of spirochetal disease often do not have antibody free in plasma; it is bound in the tissues in immune complexes. The 18 cases of Lou Gehrig’s disease which we have cultured, all have a spirochete in their blood, which reacts with Borrelia burgdorferi antibody. Only a more complete biochemical analyses of maj or components will determine how closely the ALS spirochete may be related to the pathogene of Lyme disease and of MS . There are more than 1 00 known serovars of Leptospira inferogans; the taxonomy of B orrelia may be equally complex. Genetic susceptibility to MS has been substantiated.[29,5] This explains why many persons have antibody to the agent in their plasma, resulting from subacute infections​18​.

Red Blood Cell Puzzle

Some time ago Dr. Richard Bedlack informed about interesting finding in his 2021 update on ALS. He described how researchers found out the CSF of ALS patients seem to be toxic and when injected to mouse, it seems the mouse shows impaired motoric function. However if they filter the fluid using neurapheresis technique and then inject again into mouse (different one) there seems to be no change in the motoric functions. What this means? It can narrow-down this whole exercise to a theory there is something wrong with red blood cells because mainly these are filtered out. It is known red blood cells can be target of bacterial infection – there are intracellular pathogens and there are intracellular stealth pathogens suspected in ALS. It will be interesting to see how this investigation ends, it is already more than one year when Dr. Bedlack informed about that.

“We are pretty excited about this, that´s the only reason I am presenting it today, it is very preliminary, we need to replicate this few times, and we still haven´t figured out what exactly we are filtering out, those results, those experiments are under way right now.” [Dr. Richard Bedlack]

As well established, white blood cells rapidly scavenge undesirable particles, bacteria or otherwise,  and haul them away for disposal. It has never been surprising to see neutrophiles transporting  bacteria and fungi. Erythrocytes, on the other hand, were thought not to participate in moving,  destroying, or housing foreign invaders.  This view of red cells as inert bodies was rudely dispelled by faculty members of the University  of Camerino Medical School in Italy. Seeking to learn whether erythrocyte parasites were involved  in hemolytic anemias, they found microbial life in red cells of all individuals examined[49] (see color  insert)​18​.

It has been postulated that cell wall deficient forms within erythrocytes may be responsible for  some chronic diseases. For instance, variant forms of microbes may act as haptens and stimulate  production of hemolytic antibody.[38] To mention one example, Treponema pallidllm might live  intraerythrocytically as a tiny unit, stimulating the host to regard the red cell treponeme conjugate  as foreign. This would explain paroxysmal cold hemoglobinuria which develops in some syphilitic  patients​18​.

Glutamate Puzzle

Those heightened glutamate levels in ALS patients can be a result of presence of those infections listed in the table above. Bacteria covered in biofilm or surviving in cystic forms, stimulate QUIN production which can influence glutamate levels​19–21​. Also impaired astrocytes, the primary cells responsible for cleaning-up extracellular glutamate can play role, if infected by EBV or other pathogens, their protective role can be turned to pathogenic.

Although neurologic dysfunction occurs frequently in patients with Lyme borreliosis, it is rarely possible to demonstrate the causative organism within the neuraxis. This discordance could arise if neurologic symptoms were actually due to soluble neuromodulators produced in response to infection. Since immune stimulation is associated with the production of quinolinic acid (QUIN), an excitotoxin and N-methyl-D-aspartate (NMDA) agonist, we measured levels of CSF and serum QUIN, and lymphokines. Samples were obtained from 16 patients with CNS Borrelia burgdorferi infection, eight patients with Lyme encephalopathy (confusion without intra-CNS inflammation), and 45 controls. CSF QUIN was substantially elevated in patients with CNS Lyme and correlated strongly with CSF leukocytosis​21​.

Surprisingly, we found EBV not only in B-cells, but also in astrocytes and some microglial cells. Significantly, the virus was transcriptionally active in these cells and expressed EBNA-1, and to a lesser extent the early lytic cycle protein BZLF1. Taken together, these findings support a role for EBV in the pathogenesis of MS​22​.

When going through stories of ALS victims we noticed another pattern – not so rarely outdoor as hobby was mentioned. People who loved nature, who liked outdoor trips, hiking etc.
Also other pattern was sharp back pain some time before the bigger troubles started. This all indicates infections, including those suspected in Lyme, can play role, no matter what CDC et al. says.

ALS Explained

Explaining ALS is very hard, very ambitious but compared to the official and aged „we have no idea“ position we could deduct quite logical experimental picture of the disease. We started with unquestionable empirical findings which, after generalization, all point at gradual and rather long term exposure to oxidative stress. Despite the understandable unpredictability of the damage caused by free radicals we were able to link the damage to many of those low level findings which ALS researchers report to public in cryptic way. This is mainly cell injury, DNA damage, impairing enzymes and proteins in general, ultimately leading to complex domino effect.

Despite higher oxidative stress can lead to development of many diseases we need to hypothesize why it seems it causes very selective damage to motor neurons. This could be explained by underrated occurence of various infections of central nervous system, some of them can target motor neurons. Even ALSA states that one reason why motor neurons are affected can be very simple – they are the longest nerves in the body, some even 1 meter long and the energetic, nourishment demand needs to be corresponding. If we add mercury intoxication (shortens axons!) coming mainly from amalgam fillings, polluted air and diet (big fish like tuna are contaminated; having tuna sandwich every other day is not a good idea) there can be already few simultaneous factors contributing to motor neuron damage. Hypoxia is another ALS finding which puts stress on cells (risk of apoptosis) and which also often signals presence of bacterial infection. Besides viral infections, it is mainly the stealth bacterial infection, protected by cystic forms and biofilm, which can be another cause of neuroinflammation in CNS. Term „selective vulnerability“ is used in scientific circles and motor neurons seem to receive damage earlier than other neurons.

The strange mistake the official sources repeat when informing about ALS is how they blend the common higher order factor like oxidative stress among the low level findings like cellular defects. Together with overstressing of genetical factors, which are in fact again consequence of those harming mutagens, and by neglecting the microbial question, the ALS disease remains horrific killer disease . This is a clear evidence ALS research lacks creativity and systematicity – these people do not try to form end-to-end big picture of ALS, instead they chaotically mix everything in one „pot“ and state it is sort of mystery. This is highly untrustworthy approach which given all the controversy negatively impacts the success of the global ALS fight.

The classic experimental ALS definition provided by ALSR still holds – no changes necessary.

Plan A & Plan B Revisited

The strategic plan A, whose objective is nothing else than deciphering ALS to the degree it can be cured at some stage and prevented due to known etiology, should be critically reviewed by independent and high morale possessing subjects.

We have pointed out many problems which cripple the progress to high degree. One is the terrible use of statistics in relation to ALS. In short – only unsuccessfull and fatal cases are counted while anything else is neglected, ignored, closed as „misdiagnosed“. This is already having potential of criminal act.

Every brighter person can recognize what space for terrible gaps and mistakes this creates. There are numerous edge cases including cases like Nelda Buss, where even all formal examinations and tests confirmed ALS, mutliple times. And then she recovered. Result? What officials say? She never had ALS and if she claims that she is providing disservice to ALS community by giving false hope. Isn´t this insane? Did this really happen? Is that possible? Well, yes it happened during years 1984-1987. This is only the tip of the tip of the iceberg. We are very disappointed humans of 21st century are unable to see the flagrant violations of everything in ALS.

Anyway let´s leave this strategic part to those ALS researchers, let´s let them to continue in their ineffective unethical slow work. It is their own shame they are unable to bring results.

However the tactical plan B should be given to the alternative camp who really tries to help the patients, effective immediatelly. Based on those undeniable findings it is clear there is a room for experimental and preventive heuristic program.

The first aid kit needs to be build around the neutralization of oxidative stress and gradual careful immunity reinforcement goals. The ALS experimental theory builds on simple axioms. Living organism is already programmed to seek for survival path, there is no need to teach it, no need to hack the low level molecular processes as researchers are trying but there is express need for addressing those high-level environmental factors. There is no need to develop free radical scavengers like Edaravone Radicava which cost the system $145,000 per anum.

Nature has its own free radical scavengers, antioxidants and enzymes, super oxid dismutase and glutathione, A.C.E vitamin combo, alpha lipooic acid, magnesium etc. People can wonder – but just above detox combo complemented with rapid healthy diet free of processed food and few natural immune boosters would not do worse result than Rilutek (5% slow-down). Obviously nobody is interested in such case studies, there is no financial power and interest behind it. Soon it could be state/tax payers who is interested as the expenses for just neurodegenerative diseases rapidly increase.

It is absolutely critical to eliminate the barriers and sources of toxicity, help with all detectable infections, provide top class natural BIO class nutrition and many other cheap and widely available supplements.

The most crucial factor name is TIME. It is known that typical amount of wasted time from the first noticable symtpoms to the diagnosis is between 6 -18 months. Can you imagine that you start helping your organism 180-540 days earlier? Much earlier before you get bedridden, before the flames of neuroinflammation burn your nerves? Immediate reaction is the half of the success, perhaps even more and medical science is aware of that. But from some strange reasons, they still stubbornly insist on the extremely error-prone approach consisting of slowly ruling out other options, while not providing sufficient guidance, insight and generic therapy. Months are wasted and at the end death penalty comes – this is today medicine.

Eventually, people need to choose. Either they trust the system with all the controversies and they will be getting lethal diagnosis and worthless drugs, they will be pushing FDA and then celebrating another drug with speculative few months longer life with the disease, not knowing they should be requiring much more and mainly, this old game is already quite embarassing. Or they educate themselves and self-mobilize and take their destiny into their own hands, earlier the better for them. There are inspirative examples to follow already …

No Cure Yet But Odds Rise

We are not The 🌿HERBAL GANG🌿(🤑), we do not claim something as simple as expensive bottle of herbs cures ALS. Our goal is mainly to improve the medial picture of ALS in the eyes of public. They perceive it mostly as a brutal and fatal disease. There is no insight into why it can cause such symptoms and why people are dying, despite they were diagnosed years ago. This situation does not change for decades. It is frozen despair.

Also we want to remind people there are success stories but media do not cover them. Even Mr. Bedlack from Duke University openely speaks about plateaus, reversals, full recovery including Nelda Buss – he admits he knows about more than 50 such edge cases. Then there are other people who are not known. These cases are mostly immediatelly denied, called scam, fake news but with no real evidence. Question of „providing evidence“ is very interesting. Is recovered person who is walking again, and who is providing all the paper work, an insufficient evidence? Well OK. Now what evidence provide those unbelievers? They have nothing in their hands, they have only anger, speculation and disbelief – or they possess huge institutional power enabling to control the truth (despite they claim they don´t really know what ALS is and what causes it).

Moving ALS out of the always fatal category is our mission and as everyone can verify, this situation is real already. It is still not sufficient, people require thousands of recovered individuals! But how is this possible if these cases are removed from stats with „was not ALS“ conclusion?  

The lack of faith and support is killing the experimental spirit which prevents new success stories – something which cancer patients are used to, even pancreatic cancer has its success stories and nobody is denying it. ALS community is unique. With ALS people must simply die and then they died on ALS. If they don´t die and improve they did not have ALS. This type of logic would not succeed anywhere else, in fact it is a diletantism smelling with tautological fallacy, but in ALS it is the reality. With ALS, expect everything but logic.

The below cases have all something common – even if you do not believe now, please remember them, you never know when a call for help or need for inspiration comes.

  1. Nelda Buss – 💖The Toughest ALS Warrior Ever Lived💖
  2. Bill Riffle – Long time ALS resister while on humble protocol only (could be extended!)
  3. People listed by healingALS.org project – legit and compatible group of ALS warriors, in case of any problems let us know
  4. NoName German patient – all is compatible, was never credibly questioned, true identity unknown, i, in case of further details let us know
  5. John Underhill – highly compatible, never diagnosed, too smart to wait for death penalty, author of ALS 1KD CHALLENGE, our man, main author of this website!

Part III – Crimes Against The System

We started with Holocaust remembrance and now is time to remind other two crimes against the system. We would wish the ALS problem was free of human to human disputes and arguments but the reality is different. We all are under certain pressure regarding what we are going to believe more. Is the lack of progress with ALS only caused by the medical complexity? Or are there unhealthy industrial, financial and political forces behind? We made strict statements here because we lack good answers and because we do not understand the logic applied. Scrutiny and lack of trust is automatic reaction – trust but verify is the best approach. But what if good answers are not delivered?

Trusting goverments & responsible institutions is not always the best choice. During the investigation works we ran into two related matters which we want to share and remind everyone that blind trust in authorities is the greatest enemy of truth (OK, Einstein said this).

Cold War Madness

During the Cold War mankind found itself on the edge of another world war and also existence. It is a small miracle that the civilization survived and further evolved. However  not everyone on this planet was so lucky. When looking back we have to conclude that the mentality of responsible people was perverted to high degree. The ghosts of cold war do not reincarnate only through the russian-ukrainian war, there is more of it. The debt of those times still haven´t been repaid. Beware!

Pacific Nuclear Destruction

Many people are aware of the nuclear tests conducted in the Pacific, in Micronesia. However who is aware of the suffering of those people? The euro-atlantic civilization considers itself the leading force in terms of topics like humanity, human rights, environment protection but it were these countries which commit one of the biggest crime against the environment. United States, United Kingdom and France came to this part of the world and destroyed that (hundreds of nuclear explosions)

Mainly the role of United States is extremely shameful. American administrative not only destroyed the homes of native people living there but they haven´t protected them from radioactive fallout and rather intentionally exposed them to effects of high radioactivity from scientific reasons (studying the effects). This can sound as a shocking accusation but unfortunately it is a sad truth. The amount of evidence is so big that it cannot be denied.

Mainly the tests conducted near Marshall Islands fall into category of crime against humanity. For today people it is unthinkable to test nuclear weapons only 600 kilometres away from inhabitated areas. The distance between Paris and Berlin is approximately 880 kilometres. Can you imagine the explosion of Castle Bravo thermonuclear weapon which was 1000x more powerful than Hiroshima bomb?

On March 1, 1954, the United States carried out its largest nuclear detonation, “Castle Bravo,” at Bikini Atoll in the Marshall Islands. The Bravo shot was the first test of Operation Castle, a series of thermonuclear tests. The explosion was more than two and a half times greater than expected and caused far higher levels of fallout and damage than scientists had predicted​23​.

The Bravo test used a device called “Shrimp,” which relied on lithium deuteride as its fuel. The explosion yielded 15 megatons of TNT and released large quantities of radioactive debris into the atmosphere that fell over 7,000 square miles. The explosion resulted in the radioactive contamination of the inhabitants of nearby atolls, U.S. servicemen, and the crew of a Japanese fishing trawler (“The Lucky Dragon”), which had gone unnoticed in the security zone around the blast. The incident was the worst radiological disaster in U.S. history and generated worldwide backlash against atmospheric nuclear testing​23​.

The fact that United States conducted the test near inhabitated islands whose people were not evacuated early enough, whose homes were destroyed and infested with high radiation makes that an undisputed crime against humanity. Still it is even worse … Those lately evacuated people who had no idea what radiation means, were allowed to return to their homes (Rongelap, Utirik atols) – they were literally sentenced to death in the same way Nazis were sending Jews into extermination camps. The fact that Americans knew very well, what they are doing, and that they studied these people while calling them „savages“ entitles us to classify that equally to Mengele´s experiments. How could they do this?? Please note the number of 7,000 square miles while Guam is only 1200 miles from those atols and nuclear epicenters. Would you trust such goverment and its studies?

We are closing this political and historical window by showing a photography of one young family which was sent to Rongelap (160 km far from Bikini atol), towards a sure suffering and premature death. John, Majua and their son Lekoj – all indirectly killed by the administrative of United States of America.

Following pictures were taken from documentary which is also available on Netflix (The Coming War On China).

Credibility of US goverment and some of its institutions should be further broken by other real facts. For instance the Three Mile Island Accident, an accident in nuclear power plant in Pennsylvania where substantial radioactivity leaked into the surrounded vicinity. Goverment suppressed that and what is even worse, through commercial greedy corporations it put at risk the whole East coast of United States. Nuclear disaster risk was high due to attempts to quickly fix/remove the reactor using untested advanced crane. Luckily for Americans, a true patriotic engineer put his life at stake and reverted that risky operation in legal battle (victorious!). Check Three Mile Island documentary and articles. However no real punishment came for such jeopardy, obviously due to political pressures.

This is America, greedy omnipotent corporate villains, politics highly linked with commercial interests, but also true patriots rising against it and still relatively solid legal system (Russia´s wet dream💧💧💧).

https://en.wikipedia.org/wiki/Three_Mile_Island_accident

Another radiaton & toxicity related crazy stuff is how burned nuclear fuel/waste was handled – it was simply thrown to the ocean!!! Until 1993 a common practice …

A Ban on Dumping Radioactive Waste at Sea


American Biohazard Behind Lyme

Another Cold War story is related to bioweapon research. Similarly as with pacific nuclear tests, people are aware both United States and Soviet Union went mad and tried to come up with every possible weapon of mass destruction. Anthrax research is nothing new. Perhaps not many Americans will know nazi scientists were onboarded (germ scientist Erich Traub) similarly as in the missile research (Von Braun). What for sure is not part of general public knowledge is the part of bioweapon research aimed at tick-borne diseases.

In the United States there were two main centres of the research. One was in Frederick, Maryland (Fort Detrick) and the second was established on Plum island near Connecticut, near Long Island. It is hard to believe that Americans put the research facilities near such a densely populated areas – as usually there were early protests, lot of controversy and tricks, assuring the public etc. Normal responsible people would not play with such fire anyway, but if they still do, they would put the research into desert, where risk of biological interactions (animals, people) are kept to minimum. Americans decided like they decided though.

One researcher working on those tick-born diseases was William Burgdorfer. The researchers tried to design such a bioweapon which would enable attacking army to progress with minimal losses in live force and infrastructure. To meet such requirement they needed something which can incapacitate the enemy soldiers, make them sick for a longer period and mainly, make them sick in such way, so that it is not clear what causes the sickness – an obvious attempt to prevent enemy scientists to quickly decipher the bioweapon and come up with prevention (vaccines, specific antibiotics etc.).

It is really crazy project but again a true story. Those American scientists chose ticks as the vector and were tunning it´s ability to host and spread bioweapon („disease“) which would meet the above described criteria. Ticks naturally host some pathogens but these scientists brought this into next level – they were mixing more types of pathogens inside a single tick, they were genetically modifying bacterial pathogens with some convenient viral genes, they were exposing them to various mutation promoting conditions to achieve desired results. Total madness …

Bioweapons researchers such as Willy knew that infecting large populations would require exposing people to agents for which they had no natural immunity. And to do this, researchers would have to import and/or invent new microbes. They were, in essence, playing God, creating “bacteriological freaks or mutants,[6] by using chemicals, radiation, ultraviolet light, and other agents, wrote modern investigative journalism pioneer Jack Anderson in a Washington Post column on August 27, 1965​24​.

Now what could happen? Starting from 1975, but in smaller scale even earlier,  a strange disease outbreak occured in Connecticut areas. Based on the local towns, the confusing disease, never seen before (based on symptoms), got its name, Lyme disease was born. Surprisingly it was only several miles away from Plum island. What the researchers tried to achieve – stealth and confusing capabilities, they really achieved, but it all seems that due to some accidents or even open-air tests, they managed to spread that crazy pathogen mix in their own country. Or is that all just an insane mystification?

In ALSR we follow logic, so bad news for the US goverment again. In fact, the recent COVID-19 outbreak presents a very similar situation. Here it is communistic China, everyone knows that from some strange reason the outbreak happened in the city where big bioresearch facilities are located. Official truth of local authorities is that the virus spread from the marketplace where animals are traded – yeah, sure, I believe you, LOL! Anyway the same situation most likely happened in Connecticut.

This crazy unofficial theory explains everything but it can also provide us another information regarding the credibility of US administrative, institutions which obviously refuse any responsibility and which also refuse any link between bacterial CNS targetting infections to diseases like Lyme and ALS. The facts indicate that it is only a matter of time, when this potential scandal fully explodes.

We should also not forget to highlight that the famous scientist who discovered the new spirochete, allegedly causing Lyme disease, was nobody else than the former bioweapon research member, Mr. William Burgdorfer, whose name was given to this bacterium (Borrelia Burgdorferi). Based on some additional information the blood samples of all those patients from the original Lyme outbreak did not react with the new spirochete but rather with swiss pathogen called Rickettsia Helvetica which does not occur in United States. Small hint: Mr. Burgdorfer was swiss scientist who played with ticks even before he moved from Switzerland to United States. This part of the Lyme story was suppressed as one would expect.

Similarly as some other people involved in spirochete research, Mr. Burgdorfer developed Parkinson, but before he died, he left a cryptic message to mankind, he took his secret to the grave. The controversy reaches maximum levels here, but it also has explaining potential to everything, including the „frozen ALS progression“. Please consider watching the documentary about Lyme (video below), or even reading the books​24,25​ written by investigative writers.

Amalgam Wars and Lyme Wars are still not over yet. Obviously we cannot expect blessing from the institutions like CDC/NIH or goverments 😉.

The juggling with diagnoses like Lyme, ALS, Lou Gehrig, Parkinson, Chronic fatigue syndrom, Fibromyalgia, “all is in your head” is just terrible – physicians turned against the patients. Are they serious? Hippocrates must be crying in grave …

As I got up to leave, he added, “When you came to my clinic before, we weren’t allowed to treat chronic Lyme disease. It was department policy. I’m sorry.”

Kris Newby interviewing medical professional (Stanford hospital)
It is not a secret that Lyme disease has political background – even without knowing the facts written here (bioweapon research). People simply live the experience every day, they see how the link is politically suppressed, how unhelpful are physicians, how other physicians who try to be helpful lose their medical license and are sued for tens of millions. In below documentary we could see so many bad things, unthinkable in modern civilization. The chance that ALS or Lou Gehrig disease is what we suspect, i.e. stealth infection caused by pathogens and by excessive oxidative stress compromised immune system is very high.

Please FORGET CONSPIRACY and request DELIVERING ANSWERS, because even if we omit all those CLASSIFIED data, only the fraction which is known is extremely bad.

Our humble attempts to communicate with ALS centres like ALS TDI, ALSOne and other researches like Dr. Bedlack (Duke University), M. Schwartz (Weizmann Institute) all crashed. Nobody wants to respond … Are you surprised?

We are only wondering how can physician respond something: Sorry, I was not allowed to treat you.

Under Our Skin – Lyme Wars in Action

Declaration of a new doctor
Now, as a new doctor, I solemnly promise that I will to the best of my ability serve humanity—caring for the sick, promoting good health, and alleviating pain and suffering.

I recognise that the practice of medicine is a privilege with which comes considerable responsibility and I will not abuse my position.

I will practise medicine with integrity, humility, honesty, and compassion—working with my fellow doctors and other colleagues to meet the needs of my patients.

I shall never intentionally do or administer anything to the overall harm of my patients.

I will not permit considerations of gender, race, religion, political affiliation, sexual orientation, nationality, or social standing to influence my duty of care.

I will oppose policies in breach of human rights and will not participate in them. I will strive to change laws that are contrary to my profession’s ethics and will work towards a fairer distribution of health resources.

I will assist my patients to make informed decisions that coincide with their own values and beliefs and will uphold patient confidentiality.

I will recognise the limits of my knowledge and seek to maintain and increase my understanding and skills throughout my professional life. I will acknowledge and try to remedy my own mistakes and honestly assess and respond to those of others.

I will seek to promote the advancement of medical knowledge through teaching and research.

I make this declaration solemnly, freely, and upon my honour.

Declaration of a new doctor (medical oath)

“I wondered why somebody didn’t do something. Then I realized that I am somebody.”

— William Burgdorfer (1925 – 2014)

(scientist famous for discovering spirochete bacterium causing Lyme disease, but in fact an american bioweapon researcher who was creating mutant tick-borne pathogens which were supposed to incapacitate enemy while being hardly diganosed – stealth infection, contradictory confusing symptoms, a result of mixing bacteria with viruses, putting multiple pathogens inside single tick etc.)

Willy paused, then replied, “Question: Has [sic] Borrelia burdorferi have the potential for biological warfare?” As tears welled up in Willy’s eyes, he continued, “Looking at the data, it already has. If the organism stays within the system, you won’t even recognize what it is. In your lifespan, it can explode . . . We evaluated it. You never deal with that [as a scientist]. You can sleep better.”​24​

Willy Burgdorfer

Conclusion

We have reached the end of this long summary. How should we end? It is obvious that ALS is not a medical mystery. It was once medical mystery in Lou Gehrig times and few following decades. Today it is already 🚩TOTAL CONTROVERSY🚩. The problem with controversy is that people fight against each other and do not collaborate. There are other interests, mostly non-transparent. This lack of collaboration is the best explanation we can give to explain, why ALS still remains horrific syndrome causing so much pain all over the globe.

LEAVE NO MAN BEHIND

In Part II. we intentionally skipped the military service as ALS factor. We believe everyone can deduct what mix of factors is applicable to soldiers who are at double risk. There is no excuse for those „we do not know“ official statements, not any more. Humans should learn that every sin turns later against themselves …

ALSR still fights for all, whether part of ALS community or not. This problem exceeds by far the official „2 out of 100,000“ significance. It should be clear from our lengthy explanation. Remember that and recall that once ALS will be beaten … It cannot happen without pointing at toxic exposures, chronic stress and mainly infections attacking nervous system. Forget genes.

Now let´s pass the word to the loudest metal band …

We commented above situation with non-harming text saying that media should be informing about these cases – do you see the comment there? CENSORSHIP swallowed that … ALS community is shooting itself to leg in many ways … As we already wrote, expect everything but logic.

United States spent 2.3 trillion USD during pointless 20 year lasting presence in Afghanistan. Now Taliban is back as was before but the enormous budget is gone, nothing left for some of the few hundred war veterans suffering with ALS. ALSR is clear here: Those refused american veterans were abandoned and left behind to horrific disease …

“Every danger loses something from its horror  when we get familiar with the cause.”

— Konrad Lorenz

“The rate of diletantism in ALS research is mind-blowing. There is also more than apparent reluctancy among various powerful groups to accept partial responsibility.

As a result ALS stricken people are being isolated, betrayed, sacrificed and buried alive.


Yes, I have always been a free radical.”

— John Underhill

“They were aware of all the harming environmental factors, but they were hiding and neglecting the sources of it and claimed the cumulative effect of all of them in each unique case is a mystery (and needs further studies!).

— John Underhill

“They were repeatedly feeding people with already known & extremely weak hope as they knew the poor results of all the clinical trials, still they marketed it as a great success, still they were selling these high priced products.

Natural intensive long-term treatment protocols aimed at neutralizing the known and by scientific studies confirmed harming environmental factors they called a false hope and pseudoscience.”

— John Underhill

“They created ethical codex and set ultimate principle called „First Do No Harm“, and then in case of mysterious disease started sentencing sick people to death – some refused to die though and were called errors.”

— John Underhill

“There was once a race. They claimed they want to save lives, but in the background they were profiting from death of the most sick & hopeless ones. They were called humans.”

— John Underhill (hint: euthanasy)

“Nobody knew for sure what exactly causes ALS, but they always knew that others are wrong.”

— John Underhill

“You’re not going to believe me when I say this, but if this is true, and you can prove your thesis, this is ‘get killed’ stuff. This is really dangerous shit.”

— Joel McCleary, a White House aide under President Jimmy Carter, former treasurer of the Democratic National Committee, biosecurity expert.

(source: Bitten, Kriss Newby)

“Any records of the open-air biological tests still around?” I asked. “Yes, they exist, especially for the three key open-air tests for tularemia in the South Pacific and Alaska, but they are classified. I have never read them.”

Kriss Newby interviewing Joel McCleary

“Who tries to suppress the debate, tries to suppress the truth.”

— John Underhill

“If ukrainian nation had the ethics, fighting morale and objectives of ALS researchers, their defense would collapse in the second week of the special military operation, the government would flee to London from where it would repeatedly claim any resistance was impossible.”

— John Underhill

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ALS XT – Czech Supportive Trace

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