Thanks, Michiel, for the suggestion that I join the discussion. I'm generally inclined to let what I've published speak for itself, but this article is actually about ME, and it doesn't seem right to let confusions about the article stand when I can just straighten things out.
So, I really appreciate the four clear points. I think I answered (2) in my response to Jonathan Edwards. Point (1) is really important – that people with mental health conditions might be offended because it seems I’m implying that mental health disorders are not biological, or not diseases. I’m not actually saying that, so I appreciate the opportunity to clarify.
There’s a discussion of this in the second section of the paper, but let me just say that I fully recognize mental illness as biological disease. I actually have very strong views on this – so I think everything that goes on in the mind correlates with stuff going on in the brain. So bottom line, there’s no difference at all between what we call “biological disease” and what we call “mental illness”. It’s all going on because of stuff in the body.
The thing is that there’s a very big difference between medical care and mental health care! If you have early stage lung cancer and your doctor provides only mental health care, you’ll die. Professionals see that clearly with cancer, but for some reason when it comes to ME and MUS they lose track of it.
So the IOM, NIH, and CDC are saying now that ME is a "serious biological disease" because that's the language that signals patients should be managed on the medical track rather than the track of CBT and GET. I use that same language for the same reason - but only after that stuff in the second section that explains I don't mean mental illness is not biological.
Honestly, the mind-body stuff is very complicated (particularly for a philosopher). I'm writing a few papers about it now - so it will be a while before those come out. The thing is that the BPS camp deliberately capitalizes on public confusion about mind-body issues. They get us to agree that it's all in the body or the brain (because it is), so then we agree that medicine and psychiatry should really not be distinguished (which is not quite right), and finally we accept that it's just fine to treat people who need medical care with psychiatric care - and that's seriously messed up!
Thanks for making space for me to clarify this.
Oh - on (3), we completely agree. I'm not sure why it would seem that I'm saying patients should only get medical care when there's proof they need it, but that is actually the view that I oppose in the paper. You are completely right about this - and the whole paper is intended to show why. Ethically speaking, everybody gets medical management if there's a chance that they need it. That's how the field of medicine works for everyone else, and that's how it has to work for ME.
I'm sorry to say I'm rather critical of this paper.
1) Its main argument seems to be that there is an important distinction between a mental health disorder and a serious biological disease. I think mental health disorders are most often serious biological diseases as well. At one point the paper states: "The possibility of disease means it would not be ethical to characterize ME/CFS as a mental health condition." Patients suffering from a mental health condition might find such statements to be offensive.
2) The article claims that ME patients are denied access to biological medical care, without specifying what is meant by this. As pointed out by Jonathan Edwards and Hutan, such statements seem to suggest that there are treatments that work in ME/CFS and that these are denied to patients. I think the science is very clear that there are no evidence-based treatments for ME/CFS (Ampligen is the only thing that comes close). Clinicians or advocates who claim otherwise might cause confusion to ME/CFS patients who are too sick to read or follow the debate.
3) The article also suggests that there needs to be proof of a biological pathology before patients have the right to access decent medical care and that this forms the crux of the debate on ME/CFS. I do not share this premise. If a patient is sick he/she deserves access to care. And if a treatment has been proven to be cost-effective then that treatment should be offered to the patient. Whether science is able to detect and demonstrate the underlying pathology isn't relevant to having access to care. It only helps in finding treatments that work.
4) I think the main problem in the care of ME/CFS patients is that psychiatrists have promoted a false etiology of this disease and treatments that are more likely to harm patients than help them. I think this is more important than the recognition that ME/CFS is a biological disease (whatever that means) or that ME/CFS patients have access to biological medical care (there isn't any evidence-based treatment anyway).
I hope Diane O' Leary will join the debate on this forum, to discuss these issues further. Her efforts in writing about the ME/CFS classification and the dangers of MUS, are very much appreciated.