Recently I have informed about a case report which mentions recovery from ALS syndrome. I spent some time analyzing it and can share my thoughts. The reaction of people and public is very inappropriate – it shows zero interest. As a result people will be dying. My mission is simple – change the way people think about ALS.
The first time I informed about this case was in my ALS Reasons Of Failure post. For me it was really strange as I found something which was very very close to my own theory. It really gave me a new energy in dealing with the ALS mystery. Of course I wanted to be cautious and I wanted to know more. My main question was why such hypothesis is not spread wider among public, why other science and research teams who are unable to come up with anything, have not jumped on it eagerly trying to prove any posssible value of this finding. What are the counter arguments? Well that is my thinking or my expectation on how mysterious problems should be approached. Today I know why it has not happened.
The problem with ALS is extremely large. It comprises just every possible type of human mistakes. Since I deal with it for some time I have clear evidence in the form of my own experience. I am already not surprised. It is only very sad. Some people could argue immediately but what else than mistakes cause people are not able to do anything with a person slowly dying for years? Despite having cutting edge 21st century technology (we already are not in middle age, right). The situation with ALS is just terrible. It is like if you suffered some injury and you would clearly show symptoms of the injury but all the medical system representatives (medics, surgeons etc.) would just watch you and let you internally bleed to death. This is what is happening with ALS cases. Consider my experience:
- For last 100 years science is unable to do anything with ALS slowly dying patients.
- However science is also stubbornly insisting on its approaches which have never worked.
- System is trying to explore some genetical reasons under extremely expensive costs.
- System is not eager to receive signals or inspiration from any other subject, study, report ever written.
- System ignores other theories.
- System is comprised from many research centres which all claim their mission is to end ALS. I have reached out to two such research organizations repeatedly and it is just terrible how they communicate. If I was ALS patient and knew what I know, I would be very disappointed. The attitude is extremely bad, lack of collaboration, lack of vision, lack of trust … Everyone is just playing with tax payer money on its own playground.
- Public is not interested at all. I mean trully interested.
- Instead public always gets emotional, donates additional money, but what else they do? They do not care!
- I have reached out to the famous ALS association and they just ignore everything, tens of people were reached out! Again terrible attitude.
- On social networks I have clearly informed about suspicious or promising findings. Reaction? ZERO!
- I have literally and personally contacted several ALS afflicted people and their reaction? ZERO RESPONSE, ZERO INTEREST.
- One day I woke up and by coincidence I found out another former NFL player was diagnosed with ALS – I tried to reach out to those people who started to collect funds but what do you think happened? No response whatsover!
- I have reached out to organizations like IamALS.org and ALSOne.org which seem like they really care about ill people and proper research but their reaction? ZERO RESPONSE.
- I also reached out to CDC … Yes CDC, the famous American institution which should protect Americans! Here I got response though, not really helpful, but at least something – they informed me they do not deal with research and I need to try somewhere else. First there was internal query which department should respond, typical bureaucratic stuff!
- Scientist who communicated with me and promised me to look at my findings has never done that. Instead stopped abrubtly all communication. Would you like to pay such scientists? Me not, I would fire them immediately.
- Even people from famous American Universities who could show higher IQ and interest in things have failed. ZERO RESPONSE.
If I did not go through this experience I would not probably trust anyone who would be claiming this is how world is fighting ALS. Yet this is the reality. It is no wonder a real and well documented promising case which should be immediately evaluated as “RAY OF LIGHT|HOPE” is ignored and by some immediately criticized without giving any counter arguments of scientific value. Only true disbelief, untrust and anger how can someone dare to write ALS could be caused by this and that. Recovery? How dare you! ALS is incurable! Do you understand!!! INCURABLE! Remember it, but then please give us money so we can work on possible cure for you. This is the reality.
If you, the reader read this post and you are already leaving or you left even earlier, it is another evidence that people do not care. People think it is someone else job to resolve the terrible disease. But as I wrote the ALS is a huge problem and requires strong public voice which is not coming … What can change under such circumstances?
Some time ago I got response from those authors of the healing case report. They have not answered my questions but provided me another more detailed document where the case is further explained. Their excuse was also very typical – we are very busy! That is nice, everyone is busy with his work but nobody has time for proper communication and collaboration. And surprisingly no research team has results! This certainly is not how big wars or battles should be lead. Anyway I should be less critical to these German scientists – they are on it, they are close. Their theory is based on mercury intoxication and lack of important minerals mainly which is compatible with my theory. How is it possible they do not mention any role of pathogens? They are not experts in bacteriology and immunology. They look at the problem from their expertise only. However there were others who indeed were experts in before mentioned fields but lacked the know-how in toxicology. We already know pathogens are confirmed for ALS patients but something is missing to fully and reliably explain the whole ALS syndrome. What about bringing all these camps together? Would not it help? (this is exactly what I asked CDC for).
I am sure at least some normal persons would think something along these lines:
Of course it could help! Are you saying those teams do not collaborate? They do not exchange regularly their findings? Are you saying there is no global umbrella coordinator? Holly crap! Are you serious? How can we succeed then?
Well it seems, we humans, cannot succeed if we continue in this way or we will succeed after a very long time. Please remember it. One day, people will finally crack ALS, perhaps in year 2049 and you could remember some crazy person wrote about it on his website much much earlier, it was year 2021 and you have not done anything about it. It was not your fight and you were unbeliever … 😉
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