1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!

The Witch, The Python, The Siren and The Bunny

Blog entry posted by alex3619, Apr 23, 2012.

WARNING: Philosophy Alert!

The New Inquisition? Meet Monty Python.

Are you a witch? We will tie your hands and feet then throw you in the water to see if you sink! If you do you were innocent, too bad. If you don't you are a witch, and we have ways to deal with witches. This was a very funny Monty Python skit. Its funny in part because it uses common reasoning - and common fallacies.

"If you have a disability you are faking it" is the implied claim by the current UK government and ATOS. We will cut you off from assistance, and not care if you die. If you don't die you were faking. If you do die, too bad - we need to cut costs and death is a great way to cut costs. Sure the system can be improved. We will get around to it ... eventually. In the meantime lets tweak a few features ... there, we made it better, how can you still be complaining?


Spending a Gold Doubloon to Save a Penny

This is effectively how those with ME and CFS are being treated in the UK, but not just those with neuroimmune diseases or MUSes - most disabled have to face this now. Its a new Inquisition in the worst Monty Python style. If you are disabled then you can work, you just have to be forced to do it. It doesn't matter that you may be dying - dying people have also been assessed as work capable. It doesn't matter if you can't even properly look after yourself or your domicile. It doesn't matter if travel is hugely problematic. It doesn't matter that there are not enough jobs for healthy people. It doesn't matter that most employers are reluctant to hire the disabled and that reluctance will grow to outright hostility if highly disabled people are being forced on them. It doesn't matter that large numbers of people win their appeals to restore benefits - you can cut them off again after only a month, and it can take many months for an appeal. It doesn't matter that all this may cost many times what it saves - they can spin it to sound good. It also doesn't matter that the suicide rate is heading into the stratosphere - thats not genocide, its business as usual.

This is about spending a gold doubloon to save a penny. Its irrational. Its immoral. Its an economic disaster unfolding. Careful rational spending would achieve better outcomes, and it might actually be cheaper to spend more rather than less to get more people off disability incomes.

It can be stopped.

I wonder if I should write a blog comparing the current British Government to the current Syrian Government? How many have died as a result of this? How many are homeless? How many live in torment, fear and profound mistrust of the establishment? This is not business as usual. This is not good government. This is the insane version of economic rationalism - its economic dogma.


The Siren Call.

Something similar is happening with the Dysfunctional Belief Model for CFS.

Sykes has pointed out that the diagnosis of CFS as a mental disorder makes use of what he calls the psychogenic inference. The psychogenic inference uses the following "logic":

"Premise 1. If there is no known physical cause for a
condition, there is no actual physical cause for the
condition.

Premise 2. If there is no actual physical cause for the
condition, the cause must be psychological.

Conclusion (The psychogenic inference). If there is no
known physical cause for the condition, the cause must
be psychological."
(p. 312 Functional,Reasons, Neuroscience and the Psychogenic Inference )


Sykes' paper Medically Unexplained Symptoms and the Siren Psychogenic Inference targets the first of these premises. Its not a defensible position. Its also possible, from a strictly logical standpoint, that there is a physical cause that has not been discovered yet. Or that there is a physical cause that has been wrongly dismissed. Or that there are both physical causes and mental causes - so why do they then proceed to ignore the physical?

The psychogenic inference relies either on unexplained symptoms or the lack of a known disorder causing the symptoms. The problem is that most CFS symptoms have physical explanations - you just have to do testing that goes beyond what the hospital system typically provides. So a very real alternative to mental causation is a simple lack of diagnostic and investigatory tests. This is defended on two grounds:

1. It costs too much and often comes up empty, so it is a waste of money.
2. Even if physical problems are found they do not know how to treat it anyway - again a waste of money.

The third through fifth unspoken points are:

3. Its not their problem that the lack of such testing means that patients cannot receive appropriate social support including financial support.
4. Its not their mandate to fund tests to support social claims - OK, maybe it is, but there isn't any funding, what can they do?
5. Its not their fault that they can't treat many of these problems - that requires cutting edge medicine, is often not well validated, requires a better understanding of systems biology which is not taught at medical school, and is often seriously expensive ... where is the money coming from? Who is going to fund this expensive research?

What Sykes does not discuss is the possibility the majority of current psychosomatic medical thinking is wrong. This is a whole other debate, one I will return to later. Sure there are mental issues that cause physical symptoms ... oh, wait, depression is closely associated with physical problems, as is anxiety. It couldn't be that those physical issues are driving the symptoms? No, surely not! :eek: Thats buying into the biomedical model, heresy! Sorry to point it out, but the biopsychosocial model does have a bio- part ... oh, and a social part too.

This is not to refute the importance of cognition, mood and behaviour on modifying brain induced symptoms. The brain is plastic, it can change. The physical issues in the brain might therefore be modifiable by various techniques including CBT - but that doesn't necessarily mean the problem is mental. It might be - or not.

So the basis of a psychiatric diagnosis is this: A patient has a psychiatric reason for their CFS unless a known physical cause is found - in which case even a diagnosis of CFS cannot be made as its diagnosed by exclusion. Therefore by definition, not evidence and reason, if they have CFS then they have a psychiatric illness. Case closed.

Or put another way: If you can't prove your not crazy then you must be crazy. They do not have to prove they are right, only that you can't disprove them - but no you can't do any tests. Its a presumption of craziness without evidence. Oh wait, yes, they use a symptom checklist. Presumed psychosomatic patients have these symptoms. If you have these symptoms you must :oops: therefore have a psychosomatic illness. Its only invalid if a known alternative illness explains the symptoms, like MS. If you have a physical illness with these symptoms that is not understood ... gosh, no, that could never happen! Sorry to point this out, but how many former psychosomatic illnesses are now known to be physical?


The Happy Happy Easter Bunny.

McLaren had this to say about psychoanalysis in his discussion of Popper:

"In 1922, at the remarkable age of twenty, Popper realized that, intellectually speaking, psychoanalysis was on a par with the Easter Bunny: there was nothing anybody could say or do that would force a committed analyst to admit his theories were wrong." (p. 9)

The DBM is a cognitive and behavioural version of the emotive ideas of Freud. It is an unproven model, and the model is not reality. If you always have an explanation, then nobody can prove to you that the diagnosis is wrong.

McLaren has an alternative model of mental disease based on what he calls a biocognitive model. Its just one of the alternatives out there. Functional medicine is also another model ... and by functional they do not mean psychological, but pertaining to the functional relationships between biochemical pathways and physiology, and based on systems biology. Rituximab, a chemotherapy agent, might be shown to be a cure in phase 3 clinical trials. Antiviral and immunological treatments get results up to an order of magntitude better than DBM treatments - so large that I will argue that an RCT is not required to demonstrate effectiveness. Yet somehow the DBM is considered THE alternative. I will get around to addressing the so called "evidence base" for the DBM in a later blog, including methodological flaws. I also intend to discuss the BPS model, and hope to show that it is likely the DBM has been eclectically crammed into the BPS model - but I am still investigating this and will it be well into next year at least before I have much to say on this.

So the DBM is an unproven, counter-factual and irrational position. Yet it is presented as the only evidence based model, with an implication that therefore it must be correct. I would prefer to believe in the Easter Bunny, I see evidence of the bunny every April.

It would be far more rational for the proponents of the DBM to claim that they have an hypothetical and controversial model with little clinical value, that its still experimental, the outcomes are poor, and that alternative models may have validity. No, what? How could they do that? Hmmm, ethics ...
alex3619

About the Author

I am a long term ME patient with many complications. While I have pushed research advocacy since 1993, I became political around 2009. My current project is a book called "Embracing Uncertainty". Uncertainty in medical science seems anathema to too many doctors. "I do not know" is something more doctors should be honest about.
  1. Ren
    A recent find from Ayn Rand's "Anthem" (1937/8):
    Equality 7-2521 (the novella's central character): "The council of scholars has said that we all know the things which exist, and therefore the things which are not known by all, do not exist."
  2. alex3619
    @Leopardtail

    It is not clear that there are good cheap treatments for ME, though I argue that good testing will take the guesswork out and massively reduce ongoing administrative costs. Why guess when you can measure?

    The argument you make about financial lunacy is right though, especially when you factor in research on underlying causes of disability and chronic disease. To stop future costs we need better research on biochemical causation of all chronic disease. Social factors may have influence, but the underlying problems have only ever been shown to be physical. Even diagnoses like PTSD are ongoing because of biochemical changes in the brain. In counterpoint to psychobabble about ME, I believe that world events include social ones can trigger disease (not specifically talking about ME here), but its perpetuated by biochemical changes.
  3. Leopardtail
    Penny wise, pound foolish

    When compared with the cost of housing benefit alone, the cost of reasonable tests for M.E. is trivial, the cost of most of the medications is even more trivial if administration does not exceed the cost of the medications.

    Lets say the average rent is $400/month, that every single person with ME is single and gets £150/wk in benefits (ESA/DLA/Other). That is a major underestimate and amounts to £12.5K per year. That approach will likely never lead to improvement in health or return to work. The cost would thus be circa £quarter million /decade with the patient unable to work or socialise.

    By contrast overly comprehensive testing initially would require circa £1000 plus perhaps £400 every 6 months, and drugs might cost somewhere between £150 and £300 per 6months. This treatment in all but the very most severely affected might be needed for six to eighteen months.

    In essence, treating us correctly is far less expensive than paying us to stay at home. The potential saving would add up to more than £100,000 / decade and WE WOULD BE PAYING TAX.

    The current situation is financial lunacy in addition to be inhuman.
  4. Ren
    The psychogenic inference: The origins of life are not known, therefore life is a psychogenic disorder.
    Leopardtail and alex3619 like this.
  5. Don Quichotte
    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.
  6. alex3619
    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.
  7. SilverbladeTE
    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 :(
  8. alex3619
    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
  9. Don Quichotte
    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.
  10. alex3619
    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