Do you come up with your methodology for assessing the value and impact of each piece, or are these just more likely uneducated guesses made by an individual with no real understanding of the reality of the situation?
The latter. Mine are uneducated guesses. But then I suspect everyone's opinions expressed on this thread (regarding how much damage these publications cause) are likely uneducated guesses made with no real understanding of the reality of the situation, because as far as I am aware, nobody has access to empirical evidence demonstrating the damage that these publications purportedly produce. Everyone is guessing.
Media tone though can be very damaging. To use
@Hip analogy, if a psychogenic article does ten damage points, and a social spin of no authority does one, and using this simplistically, then such social media stories are probably hundreds of times more damaging than psychobabble on its own to the social conception of ME. This is because they are repeated and repeated, copied etc. They also tap into exist prejudices and other social stories, including from biopsychosocial proponents, and government scaremongering about wasted money etc.
You make an interesting point there.
Even if such articles were known to cause harm, then it becomes a philosophical issue: of freedom of expression and factual truth, balanced against political expediency. There will be many opinions on what is best.
Myself, I tend to believe that stories should not be censored just because they represent an inconvenient truth. Even if these stories are politically problematic, if they are also true, and you start censoring truth, you never know when you might suppress a vital piece of information.
In the case of these yoga remission stories, they have got me thinking and reading about cerebrospinal fluid flow, and pondering how its stagnation might possibly be worsening ME/CFS symptoms. So I found the yoga stories a provided interesting clues, and I would not like such factual information to be suppressed.
It may not damage the cause, it may very much damage the individual. Apparently you have not been bed ridden and had a family member snip such an article out of the paper/ print off the net and throw it in your face.
I have had my fair share of ignorant and insensitive remarks and suggestions from friends and family.
The solution to this problem I think is educating these friends and family members, which unfortunately takes time, but eventually helps, I have found.
I don't think the solution is press censorship or blog article censorship, which is what some people here are suggesting. In my view, censorship and suppression of truth is not a good thing.
Unless of course you are totalitarian dictator, in which case, you tend to view censorship as a wonderful tool!
These stories are clearly rarities and should be presented as such.
It's certainly true that such remission stories are rarities, but that's the case for many ME/CFS treatments.
For example, in his conference presentations Dr Chia talks about his patients who went from bedbound to back to work in a matter of months due to oxymatrine. Now I don't doubt that this occurred in some relatively rare cases, but as we know, most people on this forum who have tried oxymatrine either get no benefits, or relatively mild benefits.
But nobody is angry at Dr Chia for presenting his best success stories.
And this applies to many ME/CFS drug treatments: often we hear of the most spectacular success cases first, but only learn the what a treatment does for the average ME/CFS patient latter.
In the present state of medical interventions, the full remission cases will always be rarities, but most experienced ME/CFS patients can read between the lines, and will understand they are unlikely to get full remission, but may well get some welcome improvements from a treatment.
The world is full of '
Crazy Mirandas'.
Great song, I had not heard that one.
