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.
50 experts and 171 advocates oppose the HHS/IOM Contract to re-define ME/CFS.
Check out our IOM Contract Forum for the latest news and to join the campaign.
Demonstrations in San Francisco Dec 9th and Washington D.C. Dec 10th
The Fall of the Tower of Babble
Blog entry posted by alex3619, Aug 14, 2011.
aimossy likes this.
About the Author
I am a long term ME patient with many complications. While I have pushed research advocacy since 1993, I become political around 2009. My current project is a book called "Embracing the Null Hypothesis". The hypothesis that is unsubstantiated is the idea that CFS is due to dysfunctional beliefs.