Part Two of the IOM question.
What should the IOM ignore? Any claim that ME is psychogenic.
First, the general reason. How many diseases has this been claimed about? How many have been proved right? How many have been proved wrong? Think about that. The batting average is zero to very many.
Second, all psychogenic disease is based on a logical fallacy, called the Psychogenic Fallacy, and written about by Sykes.[3] If a cause is not known, then its not known. This is so obvious yet it is so often ignored. It may or may not be a mental issue, its at best a guess, and there are clear biomedical issues. So very many claims have been shown to be something biomedical and not psychogenic, from epilepsy and diabetes, to MS and gastric ulcers. Research proceeding from a presumption of psychogenic disease is flawed.
Third, much of their own research is an own goal. The PACE trial published in The Lancet in March 2011 showed about 15% improved beyond the control rate of improvement, and even that was small and subjective improvement. Its easily accounted for by bias in the study design and implementation. They dropped actometers from the study, despite planning to use them, at a time when other studies using actometers showed either no improvement or a decline in function. Here is one thing that is inescapable: they show no substantive objective improvement in functioning of patients from CBT/GET, nor do any other studies. They should not have dropped the actometers. There are numerous other methodological and statistical flaws in the PACE trial, but there are too many to mention here.
All psychogenic illnesses are hypothetical. Treating them as more than that is probably unethical and immoral. Its what Karl Popper called nonscience.There is a huge difference in how the world treats mental diagnoses, in society, organizations and in medical practice. Most of psychiatry is not scientifically based, but that does not mean it cannot be rigorous. The problem is that once its thought of as scientific its presumed that standard scientific practices are adhered to. To a large extent they aren't. So a study that meets the technical basis for a high standard of evidence, such as an RCT, may be actually a very poor study due to its methodological failures. Methodology matters.
As patients we have a right to dismiss such baseless and nonscientific medical claims. We have a right to reject treatment based on such claims, but agencies often force them on us, either as a requirement for compliance or through sectioning. We also have a right to object to such large research budgets for psychogenic medicine when many findings in the biomedical science cannot be replicated due to lack of funding, and when such funding leads to a distortion in the evidence base. We have a right to there being no undue influence toward a new definition based on psychogenic studies.
If we have a psychosomatic illness because a physical illness cannot be objectively shown, how is a psychosomatic illness any more valid since it cannot be objectively shown? Yet there IS biomedical evidence for ME, but the same cannot be said for any psychogenic disorder.
[3] Medically Unexplained Symptoms and the Siren “Psychogenic Inference”
Richard Sykes
From: Philosophy, Psychiatry, & Psychology
Volume 17, Number 4, December 2010
[4]
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract