Hi
@Anne Kielland . Thank you for posting here and offering to answer questions. That's very good of you.
I'm only an English speaker so am having to rely on just an auto-translate version of your VG op-ed, and expect I will end up missing some of the nuance to your points, but there were some things about what seemed to be the broad thrust of your argument that concerned me. I know that you were writing briefly on a complicated topic, and I'm now replying briefly myself, so I'm sure misunderstandings will occur - I hope you're ok with me shooting from the hip and maybe not explaining myself as carefully as I could in the hope that I'd be able to clear up my views in a later post if necessary, when I have a better understanding of your approach.
You wrote: "The ME debate is raging again, and once again the core of the controversy is what role the psyche plays in this disease."
Then you say things like: "In our broadly composed selection of ME-affected families, everyone sees that both the mental and the physical are at stake in the ME disease. A polarization between those who think the disease is only mental and those who think it is only physical becomes a trivialized oversimplification of the various positions."
You seemed to argue both that misunderstandings and different uses of language are the reason why i) this is the core controversy and ii) the majority of both sides actually believe pretty similar things about the role of the psyche plays in disease.
To me it seems like actually this isn't the core controversy, even if misunderstandings and different uses of language can make it seem important.
Unfortunately, I think that the core controversy does quite directly relate to some bad behaviour from a number of influential medical institutions and researchers. And I get the impression that's a difficult thing for those within the culture of academia to openly recognise.
You wrote:
"We have so far concluded that a main reason for the level of conflict between ME patients and the system is the gap that exists between many patients' experience of their own illness and the explanatory models they encounter with from the health and welfare systems. They simply experience that their stories of illness are unjustifiably objectified as the result of a kind of madness; the dysfunctional thought patterns. We believe resistance in such a situation would apply to very many patient groups, it is basically very human to react when one's experience of reality is met as a form of imagination."
I don't think I agree with this, but I know it's complicated. I think that the level of conflict results more from some bad behaviour from some influential medical institutions and researchers, and then a culture within academia that prefers a collegiate downplaying of the problems colleagues have caused others. This is going to generate resentment, regardless of what a patient's views about the role of the psyche in disease imo.
In the case of ME/CFS this is not entirely unrelated to the certain psychological models of ME/CFS and the implications they have for how it is acceptable to treat patients. A lot of people here are aware of the way results from PACE were spun, and the way patients pointing out these problems were smeared. I suspect that parts of that do relate to the way some view ME/CFS patients as suffering from a mental health condition that means that can be considered to be less able to rationally decide for themselves how they want to live their lives.
There are a number of ways patients are treated that seem to stem from views within parts of medicine that can lower standards of honesty and rigour are acceptable for patients classed as having mental health problems, so for patients who haven't been able to spend lots of time picking apart the individual strands that feed into the problems with how they are treated referring to ME/CFS being treated as a mental health problem can seem a useful short-hand. But that is so often interpreted in a way that leads to nothing much changing. If the models underlying CBT/GET were just changed, that wouldn't really improve anything. Actually, I suspect that it could make things even worse.
To me, examining and explaining the problems with the way those like the PACE researchers have behaved, along with the institutions surrounding them, is a necessary part of explaining the level of conflict surrounding ME/CFS. However I get the impression that this might be quite an uncomfortable thing for academics to do themselves (unless they were close to retirement!). I'm possibly asking for the implausible of researchers who want to help in a way that could be counter-productive. At the same time, presenting the central cause of conflict as being substantially a results of misunderstandings that can be corrected with some relatively minor changes might be a narrative that would be more acceptable to those with power, but I fear that it could be a narrative that leaves more serious and important problems unchanged.
edit: I thought I'd add that while I think problems amongst certain researchers are the most important causes of conflict, that's not to say that I don't also think that certain patients have also done things to make things worse. Also, I'd be happy to clarify anything via private message is that would be helpful. Maybe I should have sent the above via PM to start with rather than welcoming you with a public series of pointed concerns - hope it didn't seem rude.
