Hello everyone, we are greeting the whole ALS community! Especially the ALS – Patient And Caregiver Tips For Every Day Living facebook group.
We have infiltrated this group, and have been monitoring it for some time. We obtained lot of valuable information. We also learned how tremendously hard the life with ALS is, how much pain and psychic hardship the diagnosis and condition brings for ill as well as caring people. We also got confirmed how insufficient is the overall response of the public, mainly in terms of media coverage, investigative works, allocation of independent and highly motivated brains on the research. What is happening in the ALS research is a real tragedy.
The serious health state is real but ALS diagnosis is one huge mistake, still accepted by humans – it became a part of human life. Small group of unlucky people. In reality ALS is a virtualized medical category – the health problems caused by main ALS factors affect millions of people, but there is a problem. In ALS there is no real effort to improve diagnostics and link the ALS state with those prior stages – yes it is impossible when you have death sentencing category. It is a political problem for medical system …
As a result ALS is treated as a separated & isolated category with typical 2 out of 100,000 cases. However many findings indicate that ALS is the advanced and neglected stage of similar health problems (intoxication resulting from polluted environment, use of poisons in health care like mercury, excessive damage of the organism by oxidative stress impacting immune system, advanced stealth like infections – yes it exists, please don´t be naive, dynamic level of pathogenicity/virulence of known pathogens due to corrupted environment like gut microbiom and resulting immunodeficiency; primitive comparisons cannot reveal it hence the term “stealth”).
This stage (ALS diagnosis) of the serious and life threatening syndrome is basically untreated, because it went too far, mostly due to problematic tests, physician mistakes and overlookings, but also due to neglecting and late reactions from the side of patients (as it happens with cancer). ALS is a label for cases of neurologic conditions where current medicine is failing – who gets there is given death penalty and left behind. It is the last diagnosis given, after ruling out all prior & better options. In ALS there is no good boundary of the disease so lethal forecast is an incredible unethical error. As a result people are misdiagnosed, but some of those misdiagnosed still die/suffer with wrong diagnosis from simple fact – treatment ends after obtaining ALS diagnosis (GAME OVER) and absence of treatment can kill in case of many medium/high severity but not necessarilly always fatal diseases.
This simple phenomenon is explained by another manipulation – ALS or Lyme etc. is a great disease mimic! It is not about our mistakes. No my dear friend, it is still the same problem, only the unique aspects decide if your system prevails and protects you, or it is so weakened, all gets worse/escalated and ALS becomes sad reality – the signal for the system to wash its hands of the escalated patient health problem. Otherwise, why would the system remove from ALS stats those few brave who, against all odds, still recovered? Why do you think these white coat inquisitors are not happy, when someone with confirmed ALS diagnosis claims he improved and recovered while literally standing & speaking in front of them with diagnosis on paper? This is always followed by huge distrust, weird reactions and quick denials, but all humans would benefit from rational investigation and scrutiny instead. Nobody ever explained this because nobody wants to hit and expose those deep ethical problems in ALS problematics. Status quo and poor allegedly life prolonging, but definitely not cheap drugs is the sad and still persisting reality.
Medical system will never admit these terrible mistakes unless it has no other choice – this can happen only when the community leaves the tragic, fatalistic and defetistic spirit and starts actively pointing out the problems, supporting and informing all newly diagnosed about the existence of very intensive holistic in nature and widely accessible protocols where one cannot lose. This allegedly controversial information is extremely important for people in danger of ALS diagnosis – instead of waiting for several months they can actively mobilize, detoxify and reinforce their organism so their waiting and fear can often end very simply: symptoms gradually disappeared, this person won´t contribute to hopeless ALS stats.
Acting on any health problem hundreds days earlier than it would be officially recognized/approved by the conventional medicine can logically lead to surprising results, mainly when death penalty comes instead of relieving diagnosis leading to real honest treatment. Yes it sounds weird but the logic is bulletproof.
You all should understand that, mainly given the emotions accumulated in ALS during last several decades (so much pain, so much disappointments, so little hope). From this reason even those known ALS facts are not communicated transparently to the community and to the public.
- What is ALS?
- What causes ALS?
- Where does it get from?
- Why certain groups are at much higher risk?
- Why some people still improved or even recovered and were removed from the overall stats?
All these questions are answered with “we don´t know” and “do not sniff around” answers or equivalents including real censorship. That´s why there is certain advanced social and care support for ALS patients, but certainly not for all of them – many people won´t get the social support and will reach the edge, medical tragedy is followed by economical tragedy. We noticed those cases too as communicated in the group.
This horrific disease indeed has its political layers, there indeed are old sins which effectively block the therapy discovery and rapid improvements, but it mainly blocks the free debate about the real causes of ALS (obvious environmental factors). How can the ALS NIGHTMARE end?
People need to get the right information, people need to verify the information (why are we having reference sections in the posts or why are we citing scientific works from respected journals?), discuss it even if it seems too controversial at first glance. People need to rise against the overall injustice in a NEW WAY. Bad news is no new drug will salvate ALS patient or prevent other death sentencing diagnosis, only a higher awareness can work and everyone should understand that we all are part of this and we all don´t want to get bad luck consisting of ALS diagnosis for us, for our children parents, grandparents, friends, colleagues, everyone. It is not 2outOf100k problem, it is a global problem of all, everyone is playing this deadly roulette.
The medical system needs to be forced to admit the mistakes and finally remedy them … It´s not true ALS is mystery, it is tragedy.
Please make sure you read the disclaimer page and you understand the motivation of this web.