The Witch, The Python, The Siren and The Bunny

The single greatest cause of ignorance is the size and complexity of the universe


The size and complexity of another person's experience is hard enough to understand.

I think one of the problems is communication.

How can you communicate what you are experiencing, what you have to deal with, in the most clear and concise manner. How can you make someone who has never experienced something similar understand at least some of it.

Most people are not evil or hostile, but they are indifferent. They have their own experiences and problems. How do you make them listen, hear and comprehend what you have to say? How could you get them on your side and make them want to help?

You have to find the way to explain it in words they can understand and at the same time not trivialize it. This is also why it is so important not to use ambiguous words which can mean many things. You also have to realize the associations that certain words may create and the possible misconceptions around them.

For instance:
the words "chronic" and "acute" have various connotations.
Chronic-is in greek-time.
Acute-is in latin-sharp.
So, the assumption that goes with those terms is that an acute illness is more severe and intense and therefore relatively short in duration. Whereas a chronic illness is continuous and relatively mild.

This is a (wrong) mixture of two unrelated variables that define a disease process. One is the duration and the other is the severity.

In reality, a chronic illness can be a constant and ongoing "acute" illness, with the same degree of severity for years. And an "acute" illness can be both mild and short in duration.

Also, a disease may not be rapidly progressive, but can still become gradually worse with time, because even if you just add the normal ageing process to an already compromised system, you have much more severe consequences. Another 10% reduction in a person's ability can make a significance difference with regards to independence and mobility.

By, the same token, a relatively mild improvement can make a similar difference. For instance- A patients that has an average of 50% reserve of respiratory capacity, will be almost asymptomatic when he/she is at 60% and may require respiratory support at 40%.

This is why proper symptomatic and supportive care can be so important, as even if they lead to only mild improvement the can be cost-effective.

This is something many people find very hard to understand. They think that if you do so well with such a small "objective" improvement, than you probably could do just as well without it. Or, they think you could do even better with another similarly mild improvement. When, neither is correct.

The words "chronic disease" and "incurable disease" basically mean the same thing. but, "incurable" is seen very different from "chronic".

The complexities of a chronic debilitating illness are very hard to understand.
It takes us (who live with them 24/7) a lot of time to understand, so we should be understanding (at least to some extent) to the inability of others to understand and try to make it simpler for them.

Hi SilverbladeTE, from my rules of thumb:

27. The single biggest danger to the human race is ignorance. The second greatest cause of ignorance is not lack of education, but the teaching of dogma. Lack of education in reason is the third biggest cause. Lack of education on facts is a mere fourth place.

28. The single greatest cause of ignorance is the size and complexity of the universe. No mortal can know more than a sliver of a slice of a fraction of the whole. The human race itself only knows a tiny piece of the total.

still too whacked out by that damn norovirus to properly particpate in this great thread, sigh
but:

Eternal vigilance is the price of freedom. Its also the price of rationality
yup!
Science offers no certainty, only eternal doubt, eternal need to wake up each day and with each new item of data, to check, check and recheck

as I've said so so often elsewhere, we Humans know this much:
.
one tiny speck in a VAST universe, to think otherwise is monstrous and patently false hubris.

"ME = fakers!" so they could throw it in the rubbish bin and save their time on "More useful things"....
Typical, short sighted, stupid bullcrap

In the UK between a third and a half who were denied benefits win their appeal (depending on sources), though only maybe 40% actually appeal. A month later (the minimum waiting time) a percentage of these have their benefits denied again, so the appeal process restarts. There is a huge cost associated with these appeals. Part of the cost is an additional 145 new Judges needed to handle it - and the system is still in crisis with appeals backing up and more people being denied benefits all the time. It is hard to sort out what is happening though - its not being reported that well and there are conflicting claims.

On infrastructure to handle disability and other issues, I agree with the startup issues. Many worthwhile projects never get started because, despite long term benefits, the initial startup costs make it unappealing in any short term planning. The other issues is that this needs to be investigated thoroughly to find (potentially) the most effective approach - and such planning would take years and cost a bundle. Even then there is a good chance it will have to be modified drastically to make it work in the real world, leading to even more delays and costs.

The cheapest way to do this, bypassing the planning/infrastructure hurdle, is possibly to start up small pilot projects on different models. The most successful would then be used as models for more, and the program extended out over time and additional locations. There is nothing better to stimulate such programs as successful models already working to improve communities and save money at the same time.

A model like that recently tried in Australia for homeless men is claimed to have great outcomes and save money - the two are not necessarily mutually exclusive. They calculated the savings by determining all costs associated with homelessness, including increased law enforcement, medical usage and so on.

Bye, Alex

We lose so much that people take for granted. Being able to work is part of regaining that loss - this is quite separate from the financial benefits.

I think that, generally, the disabled can do so much more. I am not convinced this would cost more - yes there are costs. Those costs will result in higher productivity. That productivity will lead to benefits or savings elsewhere. Its the net cost or profit that determines its viability from a completely economic perspective. From a social capital perspective there might be very substantive intangible benefits from it that don't have a direct monetary value. Social cohesion, social optimism and other factors might well be improved enough that even if there is a small net loss it still might be very worth it.


I think we fully agree on that. What I meant was that building the initial infrastructure required, is much more expensive than the current system.

I think the biggest problem, both in medical diagnosis/ treatment and in disability issues is the lack of individual approach and trying to fit people into prefixed "boxes" that don't really exist.
The fact that we do not know or understand all the variables and complexities, don't mean that we should completely ignore them and stick everyone into some Procrustean bed. "one size fits all" doesn't apply here.

I don't know enough about the situation in the UK, specifically, to seriously comment.

I know there are also people who are evaluated properly and are even given their benefits based on their medical letters without a medical evaluation.

The question is what is the balance and also how many patients that were wrongly denied do receive their benefits after they appeal.

Hi DQ, let me start by commenting on your last point. These are indeed very complex issues. Almost any simple solution is likely to be too simple. Politicians like simple though, and cheap and simple is even better for them.

The issue I am trying to get to on death rates though, and lack data for, is how many disabled were dying before, compared to how many disabled are dying now. That data is lacking. We know how many are dying, but not why. The implication, and anecdotal reports, are the death rate has risen. I want to know by how much. Some of those committing suicide are doing it because the quality of life, the capacity to cope, is diminished - in those cases diminished beyond the capacity of the individual to cope. If this is a few here and a few there (which I strongly suspect is not the case) then its maybe not a huge issue. If on the other hand this involves large numbers of people then its a big problem.

The number affected severely is in the tens of thousands. More will be targeted over time. Many more are now afraid of their own government and institutions. Fear is the operative word.

I agree that the problem is in various ways worse in most parts of the world. I also consider that an issue requiring attention. The issue in the UK is that what they are claiming they are trying to do sounds reasonable, but what they are actually doing isn't. I have called it euthanasia by stealth on occasion. If society wants to go down that road it should at least be honest about it and open it up for debate. Doing it on the sly is not acceptable. The first step is to legalize euthanasia - anything less is hypocrisy.

One of the issues in the UK is that many of the disabled were receiving benefits specifically targeted at their capacity to work - that enabled them to use taxi travel to work instead of buses for example, or assisting with wheelchairs or other aids. That is one of the programs being severely downgraded. The onus is indeed on the disabled. Even dying people are being asked to work. People who are bleeding profusely have, it is claimed, been threatened with denial of benefits if they leave the premises during disability reassessment.

Most disabled people want to work. If a way can be found to do this then it would benefit them as well as society. We lose so much that people take for granted. Being able to work is part of regaining that loss - this is quite separate from the financial benefits.

I think that, generally, the disabled can do so much more. I am not convinced this would cost more - yes there are costs. Those costs will result in higher productivity. That productivity will lead to benefits or savings elsewhere. Its the net cost or profit that determines its viability from a completely economic perspective. From a social capital perspective there might be very substantive intangible benefits from it that don't have a direct monetary value. Social cohesion, social optimism and other factors might well be improved enough that even if there is a small net loss it still might be very worth it.

Bye, Alex

Take toxic chemicals and potentially poisonous drugs. We test them within controlled conditions in the lab, then limited conditions in clinical trials. But how will they interact with other disease conditions not controlled for, other pathogens, other drugs, other toxins? How about drugs and toxins that do not even exist yet? The potential combination is enormous, and grows exponentially larger if you allow for combination of three factors, four factors, etc. It can't be adequately tested for - its economically and practically impossible.

I fully agree with that. I think we are not being cautious enough in allowing the use of various chemicals, based on such limited studies.
You can argue that if there is a significant benefit (such as remission from a serious life-endangering illness) in taking that potential risk it is justified.
But, why should we allow synthetic chemicals to be used in that way in detergents such as washing liquids shampoos etc. Or why should we give potentially toxic medications to perfectly healthy people to treat numbers, (which are no more than surrogate markers for a possible disease) on their blood tests?

As to the situation in the UK.

From what I could understand about it, this is another example of how good intentions combined with a proper amount of human ignorance and stupidity can lead to hell.

The idea behind this reform, as I understand it, is very similar to what I think-
Instead of putting a label of "disability" and marginalizing people, making them feel like a burden on their families and the society, we should try and find the way to help them lead a productive life and earn their living.

Instead of giving them a disability allowance, we should give them an ability allowance which will help them make the most of their abilities and talents despite their disability.

The problem is that this approach is not less expensive, and requires much more innovative thinking and efforts if you want it to work.
It's not enough to tell someone-you can work a limited number of hours, under certain conditions. you also have to provide that person with the place in which he/she can work and with the proper accommodations.

Neither work places nor occupational physicians are equipped to deal with this. Further more, the evaluation required to truly know what someone can or can't do is much more elaborate and complex.

Most people (including physicians) find it hard to comprehend the fact that someone can be very ill and work at the same time. They either doubt their illness or their ability to work.

Most people don't think it is possible to work if your condition is not stable and there are times in which you can walk a short distance on your own, alternating with times in which you can't even move in bed.

If you want ill and disabled people to be contributing members of the society, you have to change those paradigms, you have to create the proper infrastructure that will give them the place to work, you have to provide them with the proper equipment, tools and aids. If they were physical laborers you may have to provide them with training so they could do something that doesn't require as much physical abilities.

There will always be some people who will not be able to do anything which requires physical or mental efforts. But, I believe those will be in the minority, if this is done properly.

What they did in the UK is put the burden of finding the work-place, creating the proper infrastructure etc. on the patients.
They also simplified the evaluation process so it can be done in masses, by people who were rapidly trained.

so, the end result is that instead of taking people, empowering them, giving them the ability and tools to do what they can, they created a very humiliating experience in which people have to defend themselves so that they will not be left in poverty.

Instead of blaming the multiple faults of the system, the patients are the ones who are blamed for this outrageous failure. But, what do you expect from politicians?

I also think it is wrong to assess everything by mortality. It's enough if people are driven to consider suicide (even if they don't actually do it), it's enough if people are severely disabled or have life-threatening symptoms even if they don't die. Given the choice I would personally prefer to live a shorter and healthier life than a very long life of severe suffering and disability. And I believe most people would. So, why do we see mortality as the worst possible outcome?

As to mortality: =the site above gives a mix of suicide due to unemployment (not related to illness) depression (which possibly may have been pushed over the edge by this humiliating process), and death from their illness (which again hard to prove was caused by this). I believe that if you look at the total number of deaths in the UK during this time period you will find that this was a very minor contribution to it. I believe more died from medical errors during their hospitalization or from unexpected side-effects or interactions of commonly used medications, not to speak of car accidents etc.

The situation in the USA, for instance, is much worse and has been so for years. People who are ill and can't work also lose their health insurance and many times can't afford even basic medical care.

http://nejm200.nejm.org/text_submission/a-physician-who-inspired-me/

I think those are truly complex issues and there are no obvious or easy solutions.

An update on the 32 per week dying, this is the estimated death rate for the disabled. Its says nothing about how big an increase there might be. I still do not have data on that. This site now lists 21 who appear to have died, with many more potential deaths:

http://calumslist.org/

Hi DQ, I get that, the "catch" was just a turn of speech. It was discussed in the same series of lectures as sickle cell anaemia, and I do understand the evolutionary significance. Not all deleterous polymorphisms provide advantages though, yet they still can survive and propagate. One of the reasons is they may be localized very close to other advantagious polymorphisms and not have enough downside to be quickly eradicated by selection pressure. So they piggy back on the survival advantage of other genes based on physical proximity on the chromosome. Selection does not act on specific genes, but on the organism in an environment.

As to leukemia from immortalized cells, well duh. Very much like I was concerned about Vioxx. It was an obvious risk. There should have been attempts to investigate, not dismiss, those concerns. The precautionary principle often takes second place to the profit principle (its not a motive I think, it goes beyond that to a Law in some people's minds).

One of the problems with the reductionist approach in biomedicine is as you say: we don't know what we are doing. Take toxic chemicals and potentially poisonous drugs. We test them within controlled conditions in the lab, then limited conditions in clinical trials. But how will they interact with other disease conditions not controlled for, other pathogens, other drugs, other toxins? How about drugs and toxins that do not even exist yet? The potential combination is enormous, and grows exponentially larger if you allow for combination of three factors, four factors, etc. It can't be adequately tested for - its economically and practically impossible. Which of course is why there is so much denial.

There is a claim that 32 people are dying per week in the UK potentially due to actions by the government and ATOS. I do not have reliable data confirming this. I think about 13, in total, have been investigated in depth. Abuse of the disabled might be pandemic in the UK but its hard to get reliable data. Worse, while I am on the side of the patients, I cannot say I am sure the data is correct just because its repeated and repeated. Its a bad situation, and if the UK govt. gets away with doing this then any country wanting to implement austerity measures can target the disabled with a systematic de facto euthanasia program. Society is going to have to make hard choices sooner or later, and pretending its not an issue is itself a bad choice.

Bye, Alex

It's not a catch, mutations that have no benefit would disappear, as those people would die at an early age and have no off springs.
Polymphorphisms and epigenetic modifications, are nature's way to adapt to changing environments.

some mutations which are seemingly disadvantegous (such as sickle cell) confer protection from a potentially lethal infection (malaria).

That is why we never know what we are really doing when we interfere with nature. What we think is good, can eventually lead to harm, and vice versa.

in the early 2000 I heard a very exiting presentation of gene therapy for a rare and potentially lethal congenital immune dysfunction. They were starting a phase I trial and everything seemed to be perfect. except one minor point-they were creating immortal stem cells in the bone marrow. I asked them if they are not concerned those children will develop leukemia. I wasn't smarter than them, just less involved in that project, so could see it from a different perspective. They gave me some unconvincing explanations why there is no such risk. A year later they had a few cases of leukemia in their patient's group and they stopped the study.

Also, modern medicine keeps less desirable polymorphisms in the population.
People with previously lethal congenital diseases can live for many years and even have their own children.

At the same time, modern medicine makes those polymorphisms less undesirable because the outcome is not lethal any more and those people can lead a very good life, as long as they are given proper treatment and support.

And this brings us back to square one...Disability issues, resources etc.

DQ