Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 20, 2017.
I thought this was astute.
My impression from writing to thousands of people with ME/CFS, is that when people are much improved/better they are not very inclined to donate to ME/CFS. A big reason for this of course would be they don't have the self-interest. However I have wondered whether some of these people think that all people who remain ill need to do is do exactly what they did. The opposite viewpoint of this would be that the people improved were lucky or had something going for them e.g. an early diagnosis. My hope is when there is a better biological understanding of the condition, it will be clearer to more people that improving and particularly getting much better versus not improving is a lot to do with luck just as, say, it is with surviving cancer for example.
This seems plausible to me. The 2 groups got the same intervention except that the CTR used (i) pedometers and could see the results while the other group used actigraphs and couldn't see the results and (ii) the CTR group used paper diaries which they could look back on while the other group used web diaries that they couldn't look back on.
Participant global impression of change = PGIC
Having been struck with this illness I am made aware of just how much people in general and the medical community in particular tend to form beliefs that have no basis in fact as a way of explaining the unexplainable.
For people who are matched in age, ethnicity and a host of other variables a difference in survivability of say cancer may exist on the genetic level that has not yet been revealed. The interplay between groups of genes must create a vast amount of possibilities some of which act as protective. Psychology tends to fill the void causing all manner of harms in the process.
Whether you talk to people who climbed Mt Everest, made millions of dollars, won Olympic gold, or cured themselves of cancer using only nettles they're all inclined to say you need only do exactly what they did to achieve the same result.
An instinctively rigorous grasp of cause, effect and probability is not one of Homo Sapiens' strengths! People can't help themselves from drawing global lessons from local experience.
As a little hack to stay calm on the internet interpret : "To cure yourself all you need to do is this" as "this worked for me you guys, just FYI."
Sigh... So the difference in "improvement" could simply be greater optimism when reporting on the self-report questionnaires.
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