In this post I am further explaining why I have requested withdrawing ALS from the class of incurable diseases. RFC means Request For Change.
The post title can be little bit cryptic for someone but it is simple. The unsuccessful history lasting at least 100 years and inability to make any real progress in ALS treatment resulted in death sentencing diagnosis which is given to people all over the world with very little hope for any improvement. The world of medicine is really shooting itself into a foot and is crossing and violating core principles. My mission is to explain this to public and request immediate change. This is also why I have created a record at the place where global change requests can be raised – Change.org platform.
Why ALS diagnosis is problematic?
Few core principles are being violated in my opinion. Perhaps it will seem incorrect to you at first, but in such case I am suggesting you to spend more time thinking about it – again and again. What should help you is your imagination – try to imagine you were just given ALS diagnosis as of 2021. I know it is very uncomfortable imagination. Nobody wants to hear it, so nobody should give it. The health condition can be described differently, without hiding the severity but also without killing patient spirit to resist.
- Violation of Hippocratic oath
- Violation of human rights
Violance of Hippocratic oath
The existence of hippocratic oath is quite known in public and people know it is related to ethics in medical care. The oath is named after greek physician Hippocrates. The old oath is not used any more and modernized versions of oath are used more often. In the context of ALS disease there are two points where I see flagrant violation of this ethical codex.
First do no harm principle
It is very obvious that the physicians who represent applied medical science are in conflict here. Giving deadly diagnosis or fatal outlook to the patient is nothing but doing harm. There should not be any dispute. How would you feel if your life was ruined within one minute during which you would get ALS diagnosis? The power of such bad news is significantly underestimated despite the link between psychic and physical body is unquestionable. Endocrine system plays role here and it in turn affects immune system which is also known and unquestionable fact (please read something about immunosuppresive medication; corticosteroids). If everything is so obvious then where is the problem?
The problem is that medical science believes in incurability of ALS and these authorities think that it is more ethical to tell this subjective truth to patients than leaving them without any diagnosis and mainly prognosis. In my previous post I described the conflict which arises here. While ALS is a high severity and life threatening disease it also stays totally unexplained.
Unless you do not know for sure, what causes the disease, it is highly unethical to claim there is nothing what can stop the progression or revert it.[Formal logic.]
Medical scientists and physicians are often people with certain deficits. It is not surprising they are violating their own ethical codex and misusing their authoritative role in commenting health conditions. But their mistakes can be much bigger because it is them who created the false 100.0% fatality of ALS. In this case the mistake can be already enormous and monumental – if you have wrongly defined disease scope for a mysterious disease you can introduce nasty bug into your “counting” and you can start threatening and harming people with 100.0% fatality. After several decades this mistake can create a false impression of such size that the diagnosis can kill people even if given accidentally to patient with different health problem (e.g. GBS). This real danger of human factor mistakes is an evidence on why giving fatal outlooks needs to be forbidden when disease is not understood well and is not reliably diagnosed in early stages. Not all people accept the lethal diagnosis though. My investigation tells me there is a correlation that these people surprisingly live much longer. Coincidence?
It is often said that the exact phrase “First do no harm” (Latin: Primum non nocere) is a part of the original Hippocratic oath. Although the phrase does not appear in the AD 245 version of the oath, similar intentions are vowed by, “I will abstain from all intentional wrong-doing and harm”. The phrase primum non nocere is believed to date from the 17th century1.
The old greek oath also mentioned the poison administering. How does modern medical science behave today? It is administering poisons to people. This looks like serious thing right? How can I prove it? Very simply – mercury is toxic metal but it is given to humans in form of dental fillings, it is also part of vaccines together with other metals like aluminium. You may argue that it is too low doses to cause problems but are you sure? Are humans examined how much mercury got accumulated in them prior giving another micro-dose? What is low for you is not low for someone else. Poison remains poison no matter how much of it is administered. I would not mention mercury here if it was not a suspected factor in ALS disease development.
I will use those dietary regimens which will benefit my patients according to my greatest ability and judgment, and I will do no harm or injustice to them. Neither will I administer a poison to anybody when asked to do so, nor will I suggest such a course1.
Violation of human rights
Modern democratic countries in Europe and North America take human rights very seriously but daring question appears here again. Are these countries adhering to their own rules always and for really everyone? Of course not. But I am not going to describe Guantanamo cases here. That is not my ground, my ground is ALS ground. I see violation here despite it can be quite extensive interpretation – sometimes it is just not bad to walk on the edge.
Right to life
The right to life is the belief that a being has the right to live and, in particular, should not be killed by another entity including government. The concept of a right to life arises in debates on issues of capital punishment, war, abortion, euthanasia, police brutality, justifiable homicide, and animal rights. Various individuals may disagree on which areas this principle applies, including such issues previously listed2.
My extensive interpretation is that giving death sentencing diagnosis under circumstances of high uncertainty in understanding a health condition is violation of the right to life. The fact that it seems there is unquestionable empirical knowledge supporting such conclusions does not make any difference because the probability of human mistake is always non-zero as is with death penalty (judicial error). In case of ALS it is highly suspected the mistakes are caused mainly by wrong disease scope, inability to understand the disease and leaving patients untreated (forget Riluzol or other drugs, it is not a treatment). As a result many people give up and wrap up their lives – if authorities have no clue then obviously nobody can have clue – oh really? Under such circumstances some choose euthanasy which raises same ethical questions from a different angle (Right To Life vs Right To Die). Since not all countries allow euthanasy ALS patients are hit by the violation twice which is a great paradox and clear evidence of hypocracy and absence of logic in the society. ALS patients are told they will die but then they are not allowed to die in a dignified way. Even worse there is a business built on top of all these insane violations – some people need to spend fortune to actually die. Sometimes money needs to be obtained as part of public collection. The world is very sick if this all is reality. I see that clearly but what about all the others?
There should be also some right on easily accessible alternative information. This is not working well too. Only official and hopeless truth is being repeated over and over. Google search algorithm is not good at it too. However alternative information always exists but is often neglected, ignored or even intentionally compromised (“disinformation labels”). In my ALS Investigation Gems article I tried to prove that even scientific information is already source of high hopes but the real ALS research is going to different directions and not informing public well. I want people to know this and consider which version is better for them. It all is about having options.
Science (ALS researchers) is not really helpful and their support is not expected (but critics and labels are expected!) but what is indeed expected is 100,000,000 signatures from regular people all over the world. Positive things start happening then.
I am aware my request can be found absurd – mainly by people from scientific circles and people who don´t know much about ALS except it is incurable. However the devil is in the detail and I tried to inform about these details on this website (50+ articles). If nothing else I at least hope people will get interested more in the reasons why science hasn´t made any practical progress with ALS and people are dying in undignified way like during the whole 20th century. But this is year 21 of the 21st century – things are turning.
Signing this petition is expression of humanity, compassion but also desire to change the world by stopping all the injustice which the most helpless and hopeless people are facing.
“ALS is a very serious disease, or better syndrome (comparable to AIDS). It is mainly immune system related health condition. This simple fact makes the fight a highly individual matter of every patient. Nobody has right to take 100 years of historical unsuccess and put this load on every today or future patient because it is independent to them. These people are already struggling and need nothing but help and encouragement. Giving fatal diagnosis to them equals giving them death penalty. In 21st century this is unacceptable, and this is the reason why ALS needs to be withdrawn from INCURABLE diseases and moved to class of UNEXPLAINED diseases (or similar) with hard to define scope, borders, breaking points.
I highly appreciate every single signature to my petition. Time has come to restore justice and start believing in miracles.”
— John Underhill (From Shire)
- 1.Hippocratic Oath. Wikipedia. Accessed October 2021. https://en.wikipedia.org/wiki/Hippocratic_Oath
- 2.Right To Life. Wikipedia. Accessed October 2021. https://en.wikipedia.org/wiki/Right_to_life
Please make sure you read the disclaimer page and you understand the motivation of this web.
Adding comment here too. The petition is dead, it was removed by Change.org few hours after publishing it without specifically explaining what was wrong with it so I could react – e.g. changing the problematic text or whatever. This platform Change.org has full mouth of freedom, free speech etc. but then it fosters censorship as it happened in my case. Well, luckily for me, world wide web is still free and will be free. Internet cannot be silenced or shut down 😎 What is surprising though, is that I am still getting automated e-mails from Change.org how is my petition doing and whether I shared that on social media etc. This is a good joke 😀