I know what I’m about to say may sound incongruous, & inconsiderate, but it’s occurred to me that the extensive efforts patients are virtually forced to invest to learn all about ME & how it interacts with our physiology, biochemistry, & all ten of our body systems etc, puts us in quite a unique & influential position.
And this position has been amplified as we’ve had to apply a rigorous scientific & evidence-based approach to effectively deny the psychologised diagnostic & “treatment” approach of the BPS adherents.
The end result is a highly informed, proactive Patient community more than capable of producing our own expert subject summaries that better represent the exacting patient position that’s our lived ME experience.
It’s been a monumental slog to reach our present *informed*, articulate state; but our efforts are creating a deeply sound & reliable foundation that’s capable of presenting continuing professional development opportunities for Health Professionals.
We can and are steadily shaping a comprehensive insight into ME derived from the truth of our lived experience. From the fantasy of unproven, psychologised perspective we are now able to confidently explain much of the known state of science. We’re the vanguard. It’s about time.
Thank you. I am in awe of the level of knowledge this community of patients has to offer. I wonder if this is unique to us. I agree the situation has forced us to invest precious energy to learn all about how ME interacts with so many biological systems based on rigorous science.
We have also learned the hard way how scientists design studies to reinforce a narrative that makes them money.
This also underscores why gov health agencies around the world need to listen to long time patients. We know a lot because our lives depend on it...
Hi Colleen,
I know what I’m about to say may sound incongruous, & inconsiderate, but it’s occurred to me that the extensive efforts patients are virtually forced to invest to learn all about ME & how it interacts with our physiology, biochemistry, & all ten of our body systems etc, puts us in quite a unique & influential position.
And this position has been amplified as we’ve had to apply a rigorous scientific & evidence-based approach to effectively deny the psychologised diagnostic & “treatment” approach of the BPS adherents.
The end result is a highly informed, proactive Patient community more than capable of producing our own expert subject summaries that better represent the exacting patient position that’s our lived ME experience.
It’s been a monumental slog to reach our present *informed*, articulate state; but our efforts are creating a deeply sound & reliable foundation that’s capable of presenting continuing professional development opportunities for Health Professionals.
We can and are steadily shaping a comprehensive insight into ME derived from the truth of our lived experience. From the fantasy of unproven, psychologised perspective we are now able to confidently explain much of the known state of science. We’re the vanguard. It’s about time.
Best, Alida
Thank you. I am in awe of the level of knowledge this community of patients has to offer. I wonder if this is unique to us. I agree the situation has forced us to invest precious energy to learn all about how ME interacts with so many biological systems based on rigorous science.
We have also learned the hard way how scientists design studies to reinforce a narrative that makes them money.
This also underscores why gov health agencies around the world need to listen to long time patients. We know a lot because our lives depend on it...