Many patients' lives are bad enough for them to legitimately feel like a risk was worth taking for them; that is their own business and a judgement for them alone.
So what if she has a few legitimate points about using a drug that has the possibility to cause harm.
So bloody what. I am fed up with robustly healthy people getting all high minded on our behalf (she is saying all this for our own protection/benefit/education right?).
If a drug has side effects it should be clearly acknowledged. I couldn't agree more.
But that 'risk'
very much changes when you've been languishing for decades and tried all kinds of things that haven't worked.
We need real treatment NOT another oh my, that's sooo risky you shouldn't go there.
What's her stake in all this by 'helping' to inform on this.
It's a bloody risk crossing the street--or eating a strawberry too if you have the misfortune of getting hit or being allergic.
My sense of 'risk' is very different from someone who has absolutely no need for the drug and can wax theoretical on the subject.
Life carries risk. Risk can't be eliminated from the equation. And even when the risk is small (and therefore not very risky at all) if YOU are the one it affects the risk to YOU is 100%. These things are not amenable to the level of certainty her conclusions suggest.
And then there is the issue of motivation. Why the deep concern for our wellbeing on the subject. Indeed one could say THINK OF THE CHILDREN with regards to sectioning and to forced treatments given by the psych's who have no business
whatsoever in being involved with treatment of the incredibly debilitating illness. Motivation is a slippery issue--one can be convinced that their motives are indeed pure and that their judgment is sound--believing in their own rationality can just be another word for rationalising one's biases.
While we're all subject to potential for doing that some are more willing to look deeper--other's have too much at stake to look beyond a hairs breadth at the possibility their concern is for protecting something of their own not in exposing some risk to others. Make no mistake how something gets said and why it's being said is important too. That's why we have the phrase 'the pen is mightier than the sword'. If it didn't matter we would not have so much of the literature and stories we enjoy.
This is now just a general comment on the use of words in general as directed at the ME community and all the issues around our illness. We (people in general) tend to look at a study or an article at face value--we may even feel there is no way to go any further in parsing any meaning from something. This is extremely useful to those who wield words like weapons. People's motives matter. How they say things and why those particular things matter. They know that--we need to be just as savvy. It is possible to say things with a view to obfuscate, evade, deflect, dismiss, denigrate, minimise, exaggerate, confuse, deny.
I'm impressed with the few (and I hope growing number of) journalists who have taken the time to examine the issues around this illness and who listen to patients and not dismiss us as stupid or lazy. However I am fed up with all the journalists and political sycophants and really not very good psych researchers around this illness who have their heads so far up their arse that the pitch blackness has them lost to the possibility that they have been co-opted for something less than reasons of pure science.
Some of course know quite clearly what it's all about---despite their strenuous denial of harm.
**This rant took some time for me. So with any luck for all our sakes it's not likely I'll do it again any time soon.**
Also, ust an edit to note that I didn't read all posts before posting myself.
