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The Fall of the Tower of Babble

Blog entry posted by alex3619, Aug 14, 2011.

The biopsychosocial movement is indeed under serious attack regarding CFS and ME - not from patients as sometimes claimed, but from advances in the biomedical science. The evidence is strong that the argument that ME and even CFS are functional somatic syndromes is seriously flawed. Similar claims were made for MS and stomach ulcers, and a whole lot of other diseases - but nobody believes those earlier claims now. Why is the claim about ME any different?

The cries from some supporters of this biopsychosocial theory of ME are so loud now they remind me of the groans from a broken tower just before it collapses. Like many patients I prefer to call this type of theory psychobabble.

I do not support personal attacks against anybody, either directly or via threats. Quite apart from being unjustifiable, they do not help ME activism in any way. However, I do not regard targeted criticism of unsubstantiated claims like that I frequently read from the psychobabble crowd to be anything other than justified. Its part of both the scientific process and patient involvement as stakeholders.

I think it is only a matter of years before the world realizes the biopsychosocial theory of ME is untenable. The evidence already exists that this is so, including from their own studies. Yet for some reason gullible reporters, medical practitioners and bureaucrats remain blissfully ignorant of the science, and lap up hyperbolic unsubstantiated claims made in press releases and during interviews. Nobody has to take my word for the science, it is all out there in the public domain but not all of it is easy to find. It is lamentable that very few in the media seem to have the capacity for in-depth investigative reporting on these issues.

So what happens when it all collapses? What is the legacy? The world didn't learn the lesson after MS or stomach ulcers, why should this be different?

Here are what could happen, as I see it:

1. Funding gets diverted from biopsychosocial research into biomedical research on ME. This will start slowly, then accelerate. There are signs this is already happening.

2. Papers into the biopsychosocial research on ME will increasingly not be accepted for publication. People who publish such studies may find it harder to publish anywhere. Their reputation amongst their peers is also likely to decline. Those journals that do continue to publish this research will lose the respect of more and more of their readers.

3. As biology-based definitions grow in dominance, with better objective tests, the vague definitions such as the Oxford definition of CFS will become a fringe extreme alternative. This will happen last in the UK because it is the only place that this definition is widely used, and it is already entrenched. This is already happening, but the pace of change is slow.

4. ME will undergo another final name change. This will be to some name that reflects a critical aspect of the underlying pathophysiology. Things like NK Cell Dysfunction Syndrome and XAND are some old proposed candidates, but ultimately this will await the science before a name is determined. A diagnosis under the new label will likely exclude a diagnosis of any functional somatic syndrome based on the same symptoms, unless of course they try to make a complex somatic syndrome label stick. There are signs this rejection of a somatic syndrome label might happen soon under the International Consensus Criteria for ME, but this will require widespread acceptence of the criteria.

5. Class action lawsuits may be launched against institutions that have mistreated patients under the guise of biopsychosocial methods. This is already starting to be discussed at a serious level. Look for governments to pass laws limiting this type of action if you are in countries that do not already has such limits.

6. Class action lawsuits against individual doctors will proliferate. Again, look for legal limitations to be enacted by goverments. Some countries like Australia already have limits on this kind of action. It occurs to me that by enacting laws to limit our rights, the governments have essentially infringed our rights, and might therefore be legitimate targets of class action lawsuits for doing so.

7. As specific causal mechanisms are identified, expect to see more pharmaceutical companies spending large sums of money on research. They don't now because the science is mostly about biomarkers at the moment and causal networks are poorly understood. It is the pharmaceutical industry that is likely to come up with a cure, and until then we will have to make do with treatments. The alternative to this is academic and government research, together with private research institutes like the WPI. While I think these not for profit research institutions will create the major advances for the next few years, I expect to see Big Pharma take over in time.

8. An unlikely but not impossible scenario is that sufficient evidence is found to charge some of the biopsychosocial practitioners or researchers with crimes. I don't think this will ever happen, but I can't rule it out. Their defence is likely to be that there was no way they could reasonably know at the time, and most countries take the view that medical standards must be based on the accepted knowledge of the time. Of course the counter-argument may be that the evidence was published, it was either inadvertantly ignored or deliberately dismissed. This will then lead to a perception that these people were either incompetant or negligent - if legal charges are ever brought, there is a measure of justice in the line of defence they may need to raise which will be very damaging to their reputations.


There are other more extreme options (in terms of their impact on society), but they depend on specific hypothesized causes of ME being correct, like HGRVs, so I will not discuss them here. Not all of these options are of equal likelihood, and some will be resisted by embarassed established institutions who realize they have either been had or have been complicit in perpetrating the biopsychosocial myth.

Of course it is also possible that embarassed organizations might unite to redress the funding imbalance, in an effort to regain public trust. One year of research funding into diseases of similar impact is probably more than ME has ever had since year dot - I would certainly welcome a change there, although I think it more likely that these organizatons will just pretend to ignore their role in all this.

So the chief architects of the biopsychosocial theory of ME might find that they cannot be published, lose grants and funding, lose prestige and repect, and face multiple lawsuits. In extreme cases, if strong evidence can be uncovered and no special law protects them, they might face criminal charges. This is an analysis, not a threat. The most damning thing that will happen though is how they are written up in history books, but that will be way beyond my time. Not much of a legacy for them to look forward to I am afraid. All such actions will be as a result of societal measures, no patient need do anything other than testify in court and before formal investigating committees. In the meantime we should act to correct misinformation and unsubstantiated claims of the biopsychosocial adherents when and where they arise.

The only dark cloud is whether or not this will all happen again with some other patient group, such as IBS or GWS. I think that IBS is heading towards complete biological explanation, but I am less sure of how fast this is happening with GWS. Indeed there are many diseases that are still targets for functional somatic hyptheses. When we are all doing well on the future ME treatments, I think we should consider getting behind advocacy against the very idea of functional somatic syndromes as a general disease category - its a fictional invented illness, or class of illnesses, unlike ME.

This is not a prophetic future history. I think that ultimately what happens will be a complex interplay of science and politics. Am I too optimistic? Am I misreading the signs? Is the change happening even faster or perhaps slower than I claim? Please add your thoughts to where this is all going.

Alex Young
aimossy likes this.
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. Marg
    Good one Alex, I cannot wait for the fall!

    The contests are a great idea seems like we could get more votes that we do, I have only missed one day of voting it is part of my daily routine.
  2. caledonia
    This reminds me of a conversation I had with my ex-boss circa 1998. The conversation went like this:

    Me - in the future, the internet, tv, movies, music and computers will all be merged together onto one device.

    Boss: no it won't.

    Me: I don't know what this device will look like, but it will probably be small and portable. This will probably happen in 5, maybe 10 years.

    Boss: it won't happen.

    Me: the technology is already here to do it today, it just needs to become more affordable and commonplace.

    Boss: no it won't happen.

    Of course, it has happened, it took a little longer than I thought, but it's called the cell phone, iPad, etc.

    The point is, if we can see all the pieces coming together now, it will happen, it's just a matter of when.

    =-=-=-=-=
    I also think the best thing we can do is win money for research with internet contests. This will be our way of marching in the streets.
    aimossy likes this.
  3. Enid
    Two clear goals to me - ME not the junk box the "tired all the time" of ignorant medics or the "all in your minders". We are on the way !
  4. moblet
    A generational change has already occurred and debacles like this only serve to reinforce and accelerate it. Those older than the baby boomers mostly have absolute faith in the medical profession, and of course it's this generation that has been leading the medical establishment and our health systems in recent decades. This absolute faith has handed at least a generation of doctors absolute power, indeed the desire for power was probably the biggest factor in their decision to choose medicine as a career. The establishment's insistence that a particular illness has a particular cause, in spite of evidence to the contrary, is, if you step back from it, a fairly natural consequence of this dynamic. If your prime motivation is power, not health outcomes, and you can hide or bluff your way through evidence that, if acknowledged, would require you to do a lot more work, what are you going to do? To me the strongest evidence that this is how the establishment works in Australia is the fact that doctors will get punished for achieving better outcomes if they have used safer, more evidence-based methods than those dictated by their professional assocation.

    This power dynamic is still in place, but it is far weaker in younger generations, who are less likely to see doctors as gods, and indeed I've noticed that younger doctors are much less likely to try to bluff their patients into believing this. Many younger doctors will shrug and admit that they and their profession don't know everything. Good science and medical practice only happen in an atmosphere of humility, and the profession will keep being taught the humility lesson until it is learned.
  5. alex3619
    Hi Nielk, activists have been asking the question about how to get the silent million into activism for a long time. I am still thinking about it, as are many others I know. Bye, Alex
  6. Nielk
    Thank you Alex for your excellent analysis.
    As far as having patient groups push bio-medical studies to the forefront, I feel that we are a very disjointed group. Many organizations with few members. If we can somehow all unite under one umbrella and stimulate the "silent million" to get involved, it would help our cause and activism.
    The question remains though of how to accomplish this?
  7. SilverbladeTE
    "Fall of the House of Usher", hehe, classic analogy! ;)

    Vincent Price was awesome :)
  8. alex3619
    Hi eric_s, I have always had a pro-research agenda. We can influence it a little, but not much. The main ways we do this is to make sure our voice is felt in government, and by being careful in what studies we participate in. I have volunteered for a number of studies over the years. I wish I could volunteer for more. We also have a small voice in commentary on bad studies - but I don't want to oversell our influence.

    In the meantime I keep voting for WPI in the Vivint contest - and the new facebook group will help this effort in future. I also keep an eye out for studies I might want to donate to directly. While we can only do a little, that is not zero, even small steps count. If a million of us each made a small step, it would be a mighty leap collectively.

    Bye
    Alex
  9. eric_s
    Great article, Alex. The only thing i would like to add (only read about 2/3, very busy, sorry, so i might have missed you saying this) is that, in my opinion, what we should do in the meantime, is to do whatever we can to speed up the advance of the research. We need this to happen as quickly as possible and how long it takes depends on us to a good degree.
  10. Enid
    Nice one Alex - fall of the Tower of Babble - and agree it's on the way for ME now. But the time to filter through the innately conservative medical establishment to say GPs (first port of call) may take time. In the long run the psychobabblers will be discredited much in the same way as Freud's outrageous guessing "castles in the air" for lack of biological knowledge of the conditions he "treated". I even see a glimmer of hope in the innately conservative medical establishment (unable to respond/assimilate new understanding easily) in the case of Dr Myhill now reinstated.

    (Can't help thinking of the film - Fall of the House of Usher) !