This isn’t a video about ME but the parallels are striking. There is an interesting section in the middle describing how the advice offered by those in authority can be contrary to the experiences of the masses. And how the authorities then act to preserve their advice, even in the face of that advice failing. Whether you agree with the Low Carb message of this video or not, this is still an interesting video because of the descriptions of how authority figures act. 40 minutes. The speaker is entertaining and an easy listen. https://www.youtube.com/watch?v=GDlF-z_x7vc
I have been pondering how this relates to ME; certainly we have rules written by an elite imposed on patients against the evidence of their own experience, with those patients (and/or parents/guardians in the case of children) being blamed when this fails to achieve the desired results. Further those that dare to disagree are castigated as evil, in our case as 'anti-science' bullies. However, taking this arguement to its logical conclusion, does it mean that we would not bother with such as the NICE guidelines and the Cochrane Reviews. I suspect most of us would agree that the problem is not some form of guidance, but rather the bad science that underlies what we currently have. Certainly, I would not want to throw the baby out with the bath water, as we definitely needed some form of policing of the patently false claims by the snake oil salesmen, such as that involved in the Lightening Process. Obviously people should be allowed to try such as NLP as self improvement or as recreation, but when involving misinformation and lies it should have no place in the smorgasbord of treatments offered to people with ME. (Added - Oh wouldn't it be wonderful to actually have a 'smorgasbord of treatments' on offer.)
I think for ME patients the situation is different. With diet, you can pretty much take the advice or leave it. Dietary guidelines can be ignored, and you can follow your own advice. With ME there is the situation of pressure - if you want ongoing help from your doctor you really need to follow his recommendations. And worse, the situation of children, where failing to follow medical advice leads to social services interventions and the resulting devastating effects on family life. Mind you, that was the one thing I didn’t really agree with in the video. I DO think guidelines are worth challenging. Simply because so many believe they are infallible and correct. Thus failing to control your weight now carries a stigma, and somehow makes overweight folk unworthy. And pwME know all about that. So I’m all for making sure any guideline is based on the best scientific evidence available.
Motivation for wanting to become the anointed is a question worthy of further pondering, are all the reasons philanthropic or do they involve other factors such as financial gain, academic prestige, political expediency (add extra motivators as required for proving robustness of hypothesis) Do these factors change what is good or bad from the lived experience point of view that could find me curing my own health problems and then seeking to replace the anointed as a new arbiter of the evidence. Personalized medicine will probably provide clearer answers on these questions in the future but in the meantime using informed consent as a means of deciding the validity of any data could be the least worst choice.
