Part One: Verificationism

Philosophy of M.E.: If not Conspiracy, then What?
Part One: Verificationism

WARNING: Philosophy Alert! This is esoteric. It has points I am leading up to but might lose many people along the way.

One of the things I am leading up to is a further discussion of the what I am calling the Dysfunctional Belief Model of CFS (DBM), or the Wessely school as its sometimes called. Its also referred to by its overarching philosophy (the Biopsychosocial school) or its techniques (CBT/GET). However BPS and CBT/GET have other applications and philosophy - the DBM utilizes highly modified versions of these.

I have already challenged the view that a big problem in M.E. is a big conspiracy or series of lesser conspiracies. This directly leads to the most obvious question: if there is no provable conspiracy then what? My proposed answer is a combination of three things which have a high overlap: confirmation bias, verificationism and Zombie Science. I will argue that these three combine to create a particularly insidious and dangerous form of dogmatic verificationism.

Later I intend to discuss how this relates to "Evidence Based Medicine" and the Biopsychosocial movement for treating M.E., though some of that I will leave for my book. I will also be saying some negative things about the whole field of psychosomatic medicine.

This does not mean there are absolutely no conspiracies at all, no wrong-doing, no deliberate deceptions, no hidden agendas. However, this series of blogs will probably not address many of these because such claims must not be based on possibilities but evidence and reason, and I am busing accumulating evidence and developing argument behind the scenes. Its not like there is not a wealth of source material to use. These blogs are my preamble. I will probably make many mistakes, and provoke more than a little debate or dissent even if not all of it is public. Furthermore as my knowledge grows so my view may change.

I am temporarily suspending a hidden question here, that is if there is even a question of wrongdoing at all, largely because for this audience it is not one I need to address. At some point however this question has to be answered. I currently think the evidence shows the answer is yes.

For the purpose of this blog I am also not going to discuss Zombie Science. At some stage I may have more to say about zombies however. Who doesn't think zombies are interesting?


In my blog on conspiracies I briefly introduced the notion of Verificationism in science. A very simplistic view of it, in its original context, is that it purports to show meaning of things through verification or finding evidence: if you think the bird noise which sounds like quacking from the lake over the hill is from ducks, you can verify it. You go over the hill and photograph a duck. Ducks quack. So you have partially verified your hypothesis. You then see a flock of ducks. More verification. Therefore it is reasonable to presume that the bird noise is from ducks: hypothesis verified. However, if I said I thinks its the ducks, it would be absurd to claim that statement had no meaning until I found the ducks, which is an interpretation from classical philosophy - but meaning has little to do with truth or even verification. In the philosophy of science it might however be justified to claim that the statement was not scientifically verified until the ducks were found.

Now falsification (as in critical rationalism) might pose a different question: if its the ducks, does that mean all of it is from ducks? Lets make that assumption and test it. If we can find one bird that is making noise but is not a duck, its falsified. So I go and find a swan, a goose and some miscellaneous waterfowl. They all make some noise. So the noise is mostly quacking, but has other components. Hypothesis refuted. If no bird other than ducks had been found, it could have been said that the theory was not falsified, and so can be considered more reliable but not proven.

If it was falsified, the verificationist will then say that OK, now the hypothesis is the noise is mostly from ducks, and we definitely see mostly ducks, and so the debate continues. Each time a position is refuted it can be modified to account for the changing data. What is supposed to happen is that as additional modifications accumulate it should become clear the hypothesis is less and less tenable. Sadly this does not always happen.

The other problem that arises is that a verificationist approach and a critical rationalist approach lead to different questions. So the way the problem is framed, and the kind of evidence that is sought, can be different. A verificationist approach can lead to bias such that contrary evidence is not found, whereas a critical rationalist approach actively looks for ways to find contrary evidence. Verificationism is better for supporting and creating hypotheses, critical rationalism is better for eliminating incorrect hypotheses.

The modern scientific versions of these are much more complicated, with layers and caveats and statistical arguments, so are not nearly this simplistic, but it gives the general idea.

Confirmation Bias

It is accepted that problems with confirmation bias due to verificationism abound in psychological research, but at this point I do not know how accepted this proposition is - it is definitely a contentious issue. Researchers under this methodology are trying to gather data that support their theory. They may deliberately design and conduct experiments to support their theory, and avoid experiments that would not do so - indeed it is sometimes the case that experiments to disprove the theory simply cannot be created under their methodology.

An example of this is a study looking at how psychiatrists diagnose mental disorders, and as a result how accurate they were. Those who used confirmatory diagnostic processes were often in error - so this doesn't just bias research but also clinical practice.

One opinion they can hold is that contrary hypotheses or counter-arguments are somebody else's problem, its not their responsibility to do all the science. The attitude can be that if other's fail to disprove them, then its clear they were right - or they would have been disproved. So as they accumulate more and more data, they say you can be more and more sure they are right.

Confirmation bias occurs when contrary data or interpretations are ignored (in the extreme case), or when the experimental design does not allow contrary data to be found, or the data is selected or interpreted in a way to support the hypothesis, or when the experimental design is intended only for the purpose of accumulating supporting data. In essence it is about trying to confirm what you already think is true. There is only a view toward showing the evidence fits the model, although some superficial consideration of alternatives may occur. If there is a mismatch between data and model it can be dismissed, or the model tweaked, or perhaps explained in some other way - such as a call for more research funding as obviously :oops: the current study was underpowered.

It is when contrary models or data are recognized that additional explanations or hypotheses are added. Over time these accumulate to cover all possibilities. When this process is more or less complete, as in psychoanalysis, it ceases to be anything like science and becomes non-science. Every possible research outcome can now be explained. Its becomes a superstition, a pseudoscience, a modern day cult within the scientific or medical communities.

Confirmation bias is a huge risk for me in investigating for my book. I have limited time and resources and so will be selective in what I look at. I already have a negative view of the DBM. That process of selection can limit what information I use in my argument. While this is a risk for me, I think it is also a process very firmly entrenched in the DBM.

Accepted Practice

One of the accepted practices in science is that research is published and so is open to debate. Flawed or misconceived research can be challenged and mistakes revealed. However, if nobody is directly opposing them, nobody is engaged in debate, it could look like they have no opposition. A model without opposition may then be held to be widely accepted - but this might not be the case.

In the case of the DBM there is almost no vocal opposition from within their small branch of psychiatry, at least none that gets written up in press releases and the popular media quite so much. There are not a lot of researchers working on this world-wide. While there are numerous studies showing CBT and GET do not work, and in particular cause a decline in functional capacity, these are studies that are frequently ignored. The results are simply not discussed. The DBM proponents also get support from other neo-Freudian disciplines - those who support hysteria, conversion disorder or somatization as medical diagnoses.

Slightly outside the narrow view however there are numerous rival theories, enormous amounts of contrary data, and many critics within medical academia and general medical practice. Indeed most of the opposition comes from other schools of psychiatry and medical science, and I will blog about some of this later. Almost none of the issues ever raised by the critics of the DBM are addressed by the proponents of the DBM - they are simply ignored. Ignoring contrary data, models and criticism is indicative of something beyond simple confirmation bias.

Dogmatic Verificationism

The extreme end of verificationism occurs when dogma overshadows reason. Whereas verificationism tends to create bias, in dogmatic verificationism contrary evidence is deliberately ignored. Dogma, not reason, rules. Any contrary data is not considered relevant at all and is dismissed or simply not discussed. When it has to be addressed, and in an absence of sound argument against it, diversionary claims can be made and the original issue is again ignored. This is what I think is happening in the Dysfunctional Belief Model of CFS.

As Karl Popper pointed out over half a century ago, if you have a model that is flexible enough to "explain" everything, then everything can be "explained". So each and every case you "explain" becomes more "evidence" you are right. Popper called this non-science, though in other places he called it pseudoscience. If there is an explanation within a model for anything and everything, without objective evidence to support it, the explanation fits the definition of a superstition more than a science. It cannot be disproved, and hence it cannot be properly tested.

A Philosophical "Joke"

This is about different positions on knowledge. Its not quite accurate, but gives the flavour of the ideas. It also indicates why I think practical solutions are important - theory is nice but it has to be applied in the real world. Models can explain a lot, but a model is not reality.

A bunch of philosophers went into the Aussie outback after hearing a story that a Yowie was sighted. This is the Australian Sasquatch. The first philosopher said "Look, there's a Yowie, and he looks like he wants to eat us." The sceptic said "There is no such thing as Yowies, I still can't see it." The verificationist said "Lets observe and see if he will indeed eat one of us. If we watch for long enough we may prove that Yowies want to eat people." The falsificationist said "I prefer the theory that Yowies don't eat people. If he eats one of us this is refuted and I am out of here." The pancritical rationalist was more interested in the question than the answer: "Are we sure we are asking the right questions?" The first philosopher, prefering the precautionary principle said "You can hang around to get eaten, but I am climbing up a tree to watch from there." Who do you agree with?

Final comments: there is evidence of something that I would consider a ME conspiracy and yet breaks no laws. Its about irregular conduct to circumvent guidelines, ethics and standards. There is only some evidence, it needs a lot more analysis. This will not be posted on PR initially if I can establish this evidence. The report, as I currently envisage it, will be forwarded to relevant authorities and leading advocates, though I might detail such claims in my book - but I might not. At some later point it might be released. There is a also a good chance I will never be able to get that far, or that insufficient evidence exists once I get to the fine details, in which case all I will have are a number of uncomfortable questions for the people involved - and the list of uncomfortable questions is already starting to grow. There is an appendix summarizing these questions in my book. Should the report not be adequately addressed, the entire report may be made public, or published.

My next blog, if I get around to finishing it, is The Witch, The Python, The Siren and The Bunny. The Python's name is Monty, and I hope to be able to show just how irrational the "logic" behind the DBM and a few other things really is. Since I haven't finished writing this yet my fingers are crossed. Oh darn, there is that superstition again ...



I think that the major problem is that not everything can be a science or tested with scientific tools.
If you use scientific methods in the wrong place, you can reach stastistically significant conclusions which are extremely ridiculous.

For example: walking in a school yard, you have the impression that children with larger shoes also have a better knowledge in math.
So, to test your hypothesis, you conduct a study in which you carefully measure the shoe size (using very sophisticated equipment to ensure the accuracy of the measurement up to one decimal point) and the knowledge in math (again using an excellent questionnaire that has been verified).
You do this test in 10 different schools with different teachers. Or you can even do an international study recruiting thousands of children.

Your then analyze the results of your study and clearly verify that there is indeed a significant correlation between the size of the shoes and the knowledge in math.

But, one of your colleagues seriously criticizes your work. He suggests that before starting to find ways to increase the size of children's feet, you have to realize that there may be a bias and children with larger feet may also be taller and have a larger head size, and this is the reason they know better math.

So, now you get some more funding and measure those parameters in a new group of children. Indeed, you find out that the people who criticized your work were right. The children with larger shoes also were taller and had a larger head.

So, based on this data, it is quite obvious that if you want to have children with a better knowledge in math, you have to make sure they are taller.
Also, schools replace their math tests with measuring the size of the feet and the height of children.

And indeed, every year while studying math at school they become taller, further supporting the original hypothesis.

This study has none of the flaws that you discussed. Its only failure is that it simplifies a complex system, thus attributing cause and effect where none exist.

in this example it is very easy to see that the reason for this mistake is the failure to acknowledge the fact that taller children with larger feet, are usually also older and have learned more math.

But, the more complex the system is, the harder it is to recognize such flaws.
You can have numerous hidden confounding variable that even Einstein wouldn't be able to detect.
So, you can have extremely well conducted studies with very convincing statistically significant results that can lead to very wrong conclusions.

This can be a much bigger problem, if what you are measuring or checking is in fact a compensatory mechanism and not the cause of the illness.

When this translates to medical treatment or psychological interventions it can even become quite dangerous.
You may find yourself treating a surrogate marker which is in fact a compensatory mechanism, or trying to change an adaptive behavior.

Medicine relies on science, but is not science in itself.
Psychology doesn't even rely on science. It deals with thoughts and emotions when we don't even know what those are. How do you measure happiness? who is more happy someone who just won the lottery or someone who got a noble prize? is this the same kind of happiness? When you and I use the word "happy" do we mean the same thing? Can you measure the number of thoughts you have in a singly day? can you measure their size? their quality? Can you compare your thoughts to mine? Can you compare your thoughts today to your thoughts yesterday?

It is the attempt to turn everything into exact science, in my opinion, which leads to serious (and at times ridiculous) errors.

There are many other effective ways to examine and understand the world.
Hi Don Quichotte, I do not disagree with anything you have said. The example I started using back in the 90s is a hypothetical claim that tooth decay causes obesity. They are associated are they not? Where there are complicated causal links its easy for confirmation bias to lead you to the conclusion that if your hypothesis shows an association, it must be causal. Complex systems require very different ways to investigate them - simplistic reductionistic hypotheses are often wrong, even if there is data showing association. Its still confirmation bias though, or am I mistaking your point? And verification as well ... as you do more studies more data is found that is consistent with the hypothesis that shoe size matters.

I have a background in cognitive science/theory of mind, philosophy of science, biochemistry and systems theory, though I would not consider myself an expert in any of these. Verificationism is only part one of my argument, but a lot of it I have yet to flesh out. In fact its only one small section of one minor chapter of my book, I just happen to be investigating this kind of thing right now.

Part of the push for EBM though is that all medical treatments must be evidence based, using acceptable science. If something is outside medical science, if they acknowledge that, then its not evidence based, and so (under the EBM model) its not acceptable medical practice.

Bye, Alex
I only have a background in medicine.

But, I can tell you that most medical treatments and medical conduct is not evidence based.
Many years ago, when I was a medical resident, I questioned this EBMism and asked my program director (who was such an advocate of this system that he would change his approach based on the currently published guidelines) why does he use a stethoscope. I asked him if there was any RCT which showed that using a stethoscope led to better patient outcome.

At that time I didn't realize that on the other hand many EBM based treatment approaches are at the best a significant waste of money and at the worst cause significant harm.
Many of their advocates are not corrupt or receive money from large pharma companies (although I am sure some are) and will eventually admit they were wrong.

I was asked to participate in a committee that was meant to check why only 40% of physicians were following the guidelines regarding a certain management approach in order to improve the implantation of those guidelines. Instead I asked why so many physicians were following those stupid guidelines. Fortunately, the head of the committee was open-minded enough to change his approach based on the data I brought him.

Managed care uses EBM in their decisions what to finance. This leads to potentially effective treatments not sponsored by large pharma companies (who can afford those large scale studies) to be abandoned, while useless (and potentially harmful treatments) are fully financed.

Neither physicians nor patients are happy to be stuck in this Procrustean bed.

In order to give one of my patients a very effective treatment that significantly improved her quality of life, and also saved a lot of money (as otherwise she would have ended being hospitalized and requiring complicated surgery), I had to force her diagnosis into one which will be financed. Fortunately, many diagnostic entities are flexible so you can stretch them a bit to fit your needs.

I myself have to pay for the medication which helps me most, because it is not indicated for my illness. If I want they are ready to pay for much more expensive treatment, requiring hospitalization, which is indicated. Unfortunately in my specific case, it does not improve my condition, but makes it worse.

So, I share your opinion that there is something flawed in this system, not out of bad intentions, but more likely out of pure stupidity.

Like Einstein said- Two things are infinite-the universe and human stupidity.

And apparently none of us is immune to it.
Hi Don Quichotte, I am following the EBM debate fairly closely though there is much more to learn. EBM is being pushed, hard, by some institutions including government institutions. It still doesn't have an iron grip, and most treatments are indeed based on evidence that does not meet EBM standards - they use that as a reason to push EBM. As to many EBM treatments being harmful, the EBM proponents claim this will be resolved in time. We just need more EBM.

Against this is the issue that EBM seems to be academic and not necessarily practical - clinical trials do not always translate well into clinical practice. I read recently (but don't recall the details) where EBM was implemented in an aged care facility. Costs went up, outcomes went down. There is undoubtedly a lot of further development needed for EBM to be effective.

EBM leads to centralized control of medicine. One of the things I am going to be analyzing is whether or not centralized control is a good idea (I currently think not) even if an agreed methodology is adopted. I think if any one group dominates it then the Zombie Science factor could go out of control.

There are alternatives to EBM too, also based on the science. Outcomes from these are less well known as they are too new - one of these alternatives is functional medicine.

I agree that the idea of managed care is a huge part of what is driving EBM. Its about money and justified outcomes, not actual outcomes or best practice. Its why I am making a big deal out of Zombie Science, which is science driven by funding and not reason.

One of the big reasons EBM has taken off is doctors are usually too busy to look deeply at the issues, though this is not always true. EBM offers an easy and enticing alternative. I do not think EBM is intrinsically flawed, just very flawed in the way its been implemented, managed and promoted.

I do like your Einstein quote, its one of my favourites. Another saying of mine, closely related, is studity has little to do with intelligence. A smart person can be stupid in very ingenious ways.

If you have anything further to say about EBM I would be very interested in reading it. Most of my knowledge is academic, from published papers and books. I am still learning about it. I put a lot of value in real world implementation of these things and the practical problems that arise - its not how it sounds in an academic paper that ultimately counts, its what it does in real practice.

Most of the doctors I talk to here in Australia do seem to put great credence in EBM though. Its probably being pushed very hard here too though I have yet to read details about that in the Australian scene.

Bye, Alex
EBM leads to centralized control of medicine.
This is exactly my concern. Leading experts have too much power. And when they make mistakes (because as you say and I fully agree, a smart person can be stupid in very ingenious ways) it leads to everyone following them, until someone notices and also has the courage to say that the emperor is naked.
And that is on the condition that this person is not stoned but listened to...

And if large pharma companies are involved you add a lot of money to that power, which makes it even harder to go against.
In that committee I told you about, there was one prof. head of a large unit (obviously, much more important than me), who has headed a few conferences which were supported by some large pharma companies (who happen to produce that medication I thought we were giving too much of and needlessly risking our patients and spending enormous amounts of money to prevent something we don't even know is of any clinical importance).

what she had to say against my arguements: you don't have my knowledge and experience (OK, so what?), you (as opposed to me) don't care about the patients and are ready to risk their lives in order to save money (another excellent demagogic argument that has nothing to do with the specific question at hand), how dare you go against Prof. X from Harvard (is that reminiscent of: how dare you go against the pope?), Don't you realize that implantation of this treatment is considered a very important "quality of care" parameter in the entire world (true, but who said "quality of care" parameters can't be flawed?). Are you blaming me for being corrupt and making decisions based on the sponsorship I get from pharma companies (well, I wasn't initially, but your hard to understand determination to convince everyone that I am wrong makes me wonder...).

I am sure there are many other similar committees in which there is no one that questions the guidelines, or if there is, the head of that committee is not an open-minded person who is truly interested in the truth.

clinical trials do not always translate well into clinical practice.
This is true, and there are numerous reasons for that-selection biass, publication biass, short term vs. long term etc.
Also, you would be surprised at how many physicians only read the abstracts and never bother to look at the full data. They also have no problem giving an 80 year old treatment which was tested on 18-60 year old people. Or giving antibiotics which were tested in New-York to patients in London (without realizing that there may be a very different population of bacteria).

one of these alternatives is functional medicine.
I don't know much about it, and would be glad to learn more from you.

I do not think EBM is intrinsically flawed, just very flawed in the way its been implemented, managed and promoted.
I agree with you. I think it can be an excellent tool, if used correctly.
I see it more as a map to use when you are sailing, but this does not mean that you can not explore uncharted seas, nor that the charts are always correct. In fact, our best guides are the patients themselves who are swimming or sometimes nearly drowning in those seas.
I once wrote a short book in which I compared (One of my physicians-Prof. S) to a variation of the geographer from the little prince.

"...She then saw her guide, Prof. S. She told him about the really hard journey that she had until then, and the mountains that she had to climb. He looked at her as if he was looking at a small child. She could see that he was holding a map in his hand, when he talked to her. "There are no mountains" he said to her, "just very small hills". J was very puzzled. So if this land had no mountains, how could she have seen them so many times? And why did she feel so tired after climbing them, even with the magic potion? "You mean that there are no mountains in this land?" she asked quite surprised. "Oh no, I did not say that. There are very big mountains in this land, even some, that can be very dangerous to climb. I have seen some travelers that have been almost killed in terrible snow storms. But there are no mountains in this part of the land". J felt very frustrated with what he said, and asked him how he knew that and what made him so sure. "Oh, that's very easy. Look at this map" he said, showing her the map that he held in his hand. "You can see here very clearly, that there are no mountains in this are, and you can also see" he said, pointing to another area of the map, "that in the place that you first met me, there is no pond and no water, so you could not have almost drowned there, like you thought". "But" J said, "didn't you see the water?" he again looked at her as you would look at a young and confused child, and talked to her very patiently. "It might have looked like water, but most likely it was not, because as you can clearly see, there is no pond or lake or any other water containing area on this map." "But couldn't this map be wrong?" J asked "of course it could be wrong. It is also possible that the sun will not shine tomorrow, and maybe today is not today" He said to her. He grew more and more impatient as they talked. Finally he said: "look, I am a geographer, and I know this land very well. I have studied it in the university. I am highly knowledgeable in this map that was drawn many years ago, by one of my teachers, who has learned a lot about this land by interviewing many travelers. I myself have interviewed and guided quite a few travelers. "
J was not sure what to do. She did not know what was right any more. The pond was not a pond. The mountains were not mountains. She has only walked a very short distance, and feels as if she has been walking for days and days. Prof. S seemed to be very sure of himself, and why shouldn't she trust what he says? But if that is the case, then why in the world would she be imagining all those things, why would she make her journey so hard, when all she wanted was to get out of that dreadful place and be back home? "

In that specific case, I was later later able to show him why he made this mistake and he was (one of the few) who were ready to listen.

It also made me ask myself if I too, wasn't a similar geographer sometimes.
In fact William Osler warned about this many years ago:
"To study without books is like sailing uncharted seas, to study only from books is like never going to the sea at all."

This is what I meant when I said that medicine relies on science, but is not science in itself. It is first and foremost a healing art.
It requires building an edifice of character within yourself. It requires courage, honesty, knowledge and humility. There are many bright and knowledgeable physicians, but very few truly wise ones.
Most of them, like my wonderful neurologist, are not leading experts, and just quietly practice medicine away from the lights in the best possible way that they can, combining their experience and knowledge with that of their patients, guiding but also learning from each and every one of them.

I am concerned that with the increasing control of EBM, guidelines and centralization we will see less and less of them.
Hi Don Quichotte, we seem to be in substantive agreement on the main points then. I suspect we might disagree over details but then that is to be expected as the information we are using is different.

Reading only abstracts? Shudder. I get why people do that, but all an abtract is for is to point to a paper that might be worth reading. When I was trying for my PhD (and then crashed so bad I had to stop), and in the years since, I have seen very many papers in which the abstracts were not even close to what the paper really showed. They can be written as glossy promos, though in very recent days I have seen a tendency to be more accurate - but only a tendency. Unfortunately I sometimes have only abstracts to go by due to paywalls and low budget, which is very annoying. I have found ways around that for the most part, but not entirely. In any case I rarely cite things for which I have not reviewed the entire paper though I might use an online pointer to an abstract in a blog.

Functional medicine derives from integrative medicine. Its more about treating chronic disease than acute disease - its a different model. Integrative medicine was picking up on advances from systems biology (or so I understand) and using these it became more formalized and structured, leading to functional medicine. It is still too new to say much about how effective it is, but as systems biology improves so will functional medicine. It is closely tied to the systems movement in connecting biochemical pathways and physiology, including functional genetics and so on. One of the tools it is likely to use in the future is whole genome mapping when the costs come down - which may then identify potential genetic issues and assist with personalized medicine. It requires a whole different area of expertise though, including a full engagement with modern biochemistry - so it has a problem in that doctors require substantive additional training, or at least that is how I see it.

There is an institute which claims to represent functional medicine, but I don't know much about its importance:

This institute has a number of freely downloadable documents including several chapters from their textbook and has things to say about EBM. One of the interesting things about functional medicine though, based on your map analogy, is I have described it as being different from usual medical practice in that medicine is becoming increasingly algorithmic, whereas functional medicine is about creating an individualized map of a patients health - but you have to understand enough to navigate that map, which is the main drawback.

I should point out that I could be biased toward functional medicine because I have a chronic disease and a background in both systems theory and biochemistry. Ize gotz a good hammer, so I nails it good.

I see EBM as arising from a desire to increase government control over medicine in the UK, a country with "free" medical services - its a consequence of economic rationalism (which isn't always rational in my view). Its about counting numbers, not treating patients. Lately there has been talk of it becoming a management tool, which I think says it all. I suspected that it would be embraced by insurance and health management companies, but I have not found many articles discussing this aspect.

Bye, Alex
I am sorry that you weren't able to finish your PhD.
Although, I have learned over the years that nice letters after someone's name don't always mean much.
I have met some bright people, who just didn't fit the academic system (for various reasons).
I am impressed by your ability to continue and peruse complex matters and that you have not lost your communication skills, sense of humor and human compassion after so many years of such isolation.

Thanks for the link.

It is interesting, but I think the main point is as you say-but you have to understand enough to navigate that map, which is the main drawback.

More than that, I think we are very far from having that map with which we can navigate everything. It's not that we do not know how to read it. It is that it is inaccurate in some places and has missing areas in others. The problem is that we do not know where.

Or as one of my (excellent) teachers in med. school said-half of what is now written in your text-book is incorrect. The only problem is that I do not know which half. He was right, about half of what was written in my text-book then (20+ years ago) has dramatically changed.

A more minor issue is that I am not sure how realistic it is to implant this very time-consuming and expensive medicine in the real world. (they do not seem to think they should address this question).

I think the main problem in medicine is that you have one person who supposedly knows (the physician) and another who supposedly doesn't (the patient). Very few physicians (and patients) are ready to acknowledge that this is many times not so. This model for some reason seems to fit very well the needs of both.

For example:

A few weeks ago, a new respiratory physician came to see me. I have had this illness for 6 years. I reached the best (or at least a much better) management approach mostly on my own. I have the equipment of a mini-ICU and have managed most of my respiratory crises without any professional help (not fun) . Numerous physicians have made serious errors that nearly cost my life, because they insisted on fitting me and my illness into what they have seen and know. I have written a case-report about my own illness with a few open-minded and supportive colleagues. Some of my letters to the editors of neurology journals (questioning unproven axioms) have been accepted and published. I am also a physician with quite a few years of experience and considered to be one with very good clinical skills (when it comes to other patients not myself). I was asked (and agreed) to write a personal column, under a pseudonym in a patient's newsletter.

So, who is more likely to have a relatively accurate map of my illness, me or him?

Yet, after a brief interview and review of my tests, he knew how to interpret the results of my arterial blood gases much better than me (as he has done so many of them), He knew that I need to do some graded exercise (fortunately my neurologist was very much against that), he knew which treatment I should receive (again, I fortunately had the support of my neurologist), he understood exactly why I have difficulties with my respirator sometimes (which was the reason he was consulted in the first place, but as this was based on his map, I am not sure I can trust what he said), he also knew my illness beliefs, personality and motivation.

why should he assume that he knows the map of my specific illness better than I do? Why should he assume that the very unusual results of my tests (which, as I told him baffled quite a few leading experts around the world) are easily explained? why can't he humbly combine his knowledge and experience with mine?

This was more than likely merely because in this case-scenario he was the physician and I was the patient.

I even had ridiculous situations in the past, in which the same physician who thought I could not possibly have any understanding of my illness (or can even intentionally or non-intentionally fake it), consulted me regarding one of his patients because he highly trusted my clinical judgement.

Over the years of my illness I have met physicians who tried to fit me into their map with out much success, others who told me after a short while that taking care of me is like sailing uncharted seas and then left me swim in those waters (and nearly drown) on my own. And even some who were clearly hostile because I "refused" to walk in the path they made for me.

I have met very few who were ready to help me navigate my own map, helping me regain my confidence and finding together what works best. As you can imagine those were the ones who really helped.

I have always had this kind of relationship with my patients, so in the early days of my illness I took it for granted. But, I now realize that it is the exception not the rule.

But, I have also seen patients who were very angry at their physicians for being unable to provide them with exact maps and were not ready to accept the fact that none exist and at the most they can help them navigate those uncharted seas. ( I have to admit that I too have times when I am tempted to think that somewhere such maps do exist).

Last but not least, disagreements are at the root of learning and knowledge.
We never have the exact same perspective. Constructive disagreements create discussions and help us see the other's side.
Hi Don Quichotte, I have met people who were, at least then, convinced that if a disease is real then doctors must have all the answers. Hence, they reason, if you don't find answers your disease is not real.

Functional medicine has yet to prove itself. I doubt it will be very useful for all conditions, and certainly not cost effective for all conditions. However I have talked to a few people who have gone down this path or similar paths. The upfront costs are huge, but ongoing costs are minor - once you identify the primary problems then those are what you track during treatments. In any case functional medicine does not cure CFS, though it has helped a few of us. I don't expect to see huge value in functional medicine, generally, for some years. Its still way too new and underdeveloped.

I agree with you about disagreement, although maybe it would be better if I disagreed. ;) If someone is seeking understanding, then every disagreement is a chance to learn. Its only a problem if they see disagreement as a challenge to their power.

I have seen the difference in medical practitioners and the roles they take. In most cases I am happy to be talking to a doctor who doesn't know, and knows they don't know - patient/doctor interaction can then proceed on a basis of trust. Everyone has to face uncertainty at some point. Its only a problem when they pretend to know (projecting confidence) but really don't.

I know what you mean about medical knowledge though. I have seen the same thing. Even in biochemistry texts, which are supposed to be highly objective, I have seen glaring errors. In 1978 I was told the number of papers on biochemistry was doubling every four years. The knowledge advances, it becomes a forrest of interconnected and contradictory papers, and nobody can keep up. Nobody. Its why people specialize so much - focus on a small area and you can keep up to date in that. The problem is this leads to advances in related areas being missed, including contrary findings. I would be much happier seeing EBM become a structured global database with commentaries and case notes (not just RCTs) so that a doctor could find similar patients worldwide and peruse their case notes, and link to all the relevant research not just that deemed Gold Standard. Sure there should be a rating scale on research, but it should not be dogmatic. Doing this would require that all medical research be freely available - zero paywalls - though a subscription fee to such a database would not be unreasonable.

Bye, Alex
I have met people who were, at least then, convinced that if a disease is real then doctors must have all the answers. Hence, they reason, if you don't find answers your disease is not real.
Unfortunately, this is still so, even for very intelligent people.
I think that for many modern secular people medicine replaces religion. (although they would never admit it).
And if physicians are not gods they are at least angels.
I have reached the conclusion that it is fighting windmills to try and change this.
Although, in my opinion it is destructive to the physician-patient relationship, leads to dishonest and extremely expensive protective medicine and many other unwanted consequences, among which is the non-diagnostic diagnosis of MUS.

In most cases I am happy to be talking to a doctor who doesn't know, and knows they don't know - patient/doctor interaction can then proceed on a basis of trust. Everyone has to face uncertainty at some point. Its only a problem when they pretend to know (projecting confidence) but really don't.
I fully agree with that. In fact those areas of uncertainty are what can and should be mutually explored.

In any case functional medicine does not cure CFS, though it has helped a few of us. I don't expect to see huge value in functional medicine, generally, for some years. Its still way too new and underdeveloped.
I personally have (an un- related) problem with the word "functional" . To me it mostly means the severe mental, logical and humanistic dysfunction of those who use it.

But, I think that functional medicine mostly tries to suggest solutions to the two major flaws of modern medicine (that we are all aware of, but don't know how to efficiently solve)-
One is the gradual furthering away from the patient's bed-side. ( When I was a medical resident I was amazed to realize that the time I physically spent with my patient was about 1/10 of the time I spent understanding and managing his illness. So, I was mostly taking care of a "virtual" patient).
This inevitably leads to many diagnostic and management errors and taking care of test results instead of patients.

The other problem is the exponential increase in the amount of data and knowledge that a physician has to master. This leads to reading only abstracts, receiving "educational" material from drug reps. (the large pharma companies realized this frustration and knowledge gap of physicians and readily filled it with brightly colored easy to read pamphlets that help you keep updated on the important breakthroughs (incidentally medications produced by them, supported by results of sponsored trials published in leading medical journals, but this is a minor issue).

The problem is this leads to advances in related areas being missed, including contrary findings. I would be much happier seeing EBM become a structured global database with commentaries and case notes (not just RCTs) so that a doctor could find similar patients worldwide and peruse their case notes, and link to all the relevant research not just that deemed Gold Standard. Sure there should be a rating scale on research, but it should not be dogmatic. Doing this would require that all medical research be freely available - zero paywalls - though a subscription fee to such a database would not be unreasonable.
There are some attempts to do this, but so far I think none has been successful. One of the problems is that very few people will publish their research in that way, because the quality of your research, academic rank etc. are still judged by the kind of journals you publish in.
I know of one noble-prize lauriette who deliberately published most of his work in low rated journals. He said that this saved him the hassle of making endless corrections to his papers. But, he is the exception not the rule.

when you read a paper which was published in a top-rated peer-review journal someone has supposedly done the work of deciding about the quality of this research for you. In reality this is many times very far from the truth and many reviewers will base their decision on the name of the writers and where they came from, how impressive were the methods they used, how large was their sample etc. Also, many times reviewers have no time to read the paper, so they give it to one of their students who obviously has significantly less experience and knowledge.

I think that patient support groups (like your own) is an extremely good source for understanding a specific illness in all its different aspects.
From what I could see, there is a reciprocal correlation between how much is known about the disease and how much you can learn from the patients about it.

Also, the more controversies and optional management approaches there are (which means the more research there is and the more novel approaches there are) the more sophisticated and involved the patients become in every aspect of their management.

So, I think the future will be in a complex net-work which will involve physicians and patients, including physicians in training and medical students, as well as nurses, dieticians, laboratory personnel etc.
And all will constantly learn from each other.

I think and hope that the concept that physicians know everything and patients know nothing will gradually change. Most good physicians will tell you that they have learned from their patients much more than they have learned from their text-books. So, why not learn from patients in general and not only those that you happen to see in your own clinic?

I think this will also significantly decrease the costs of medical research, drug development and patient management.
Thank you for your commentary Don Quichotte. You have given me some things to think about. I cannot disagree with your reasoning just now, it seems too obvious to me, but I am still thinking about it.

The creation of a global medical database would require a paradigm shift in the way information is managed. I do not forsee it happening fast. It is however something we should be debating - and include medical professionals, scientists, information specialists, government and the public in that debate.

Bye, Alex
Fascinating conversation, alex and Don. Some passages are quite touching. Please continue.

(My biggest problem is I keep forgetting what the acronyms stand for. Damn.)
Hi Merry, yes I understand the acronym problem - even I have to stop and think about what DBM means. :headache: Darn ME brain. I try to post in each blog what each thing stands for but sometimes I might forget. One of the essential sections of my book is an extensive bibliography including all acronyms. I might think about posting an acronyms blog that people can refer to in a separate window. However, if you open the blog twice, keep one at the start, you can flip from one to the other without scrolling back. Bye, Alex
Thanks, Alex. What a brain! Open two windows. Brilliant. My first thought -- I'm serious -- was to write the acronyms on the palm of my hand.
Alex, I am delighted and grateful to you for this great project. I can follow most of it--and it is fun doing so--but like Merry, even you, I have trouble remembering the acronyms. I don't even know how to open two windows, I am ashamed to say, but was thinking maybe you could have a small list on the side which just travels down the page with the reader, spelling out what the acronyms stand for--?? Thanks for trying to help. It isn't just your acronyms but so many that I forget. (A few I have definitely learned, like AIDS or UFO.) Just in writing this, I have already forgotten DBM, the meaning of which I was hanging onto hard. It would enable me to pay attention better and give my energy to what you say, instead of struggling with this particular problem in abstract memory. THANK YOU. I always have appreciated your insights, Alex--and your wit!
Hi Sing, I am not sure that I can do a floating glossary, but I will think about posting a blog of acronyms. You can open it as another tab on your browser - one more project, but it wont be done for several days at least. One thing I can do is post a glossary at the end of every new blog ... something I might start with my next blog (which may be due tomorrow depending on how the switchover to the new forum works). I hope it helps. If this doesn't help I can just stop using acronyms and write out every word in full .... hmm, I might try that with my next blog rather than a glossary. Bye, Alex
For those who might be interested, I am adding a very large glossary of terms for my book. At some point I might blog this. This should help with acronyms.

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