Today was a great day!
I went to my appointment with my diabetes specialist and she had two medical students with her.
Although she doesn't have much knowledge of ME/CFS, she is very respectful, accepts that I am ill and that it is not a psychological condition. She first saw me when I was hospitalised in 2011.
When she asked me before the appointment if I would consent to the two students sitting in, I said "great, I can educate them about ME/CFS".
She graciously allowed me to explain my history and what ME/CFS was all about. This took up a fair amount of the appointment.
They have had no training whatsoever about ME/CFS.
I filled them in on what my life was/is like pre and post ME/CFS, the possible triggers (including statins), that it is not a psychological illness, the terrible symptoms, the associated disability, the poor attitudes of the medical profession, the lack of research attention, the uselessness of the CBT and GET approaches, the absence of a cure, the political agendas, how hard it is to live with, why I need a wheelchair and shower chair, why exercise can be harmful, how everything we do is an energy consuming "activity", the realities of pacing eg which day this week can I have a shower or make a phone call, how hard it is to manage diabetes and severe ME/CFS etc etc etc.
They were respectful and attentive. They asked questions. They wrote notes!
All in all it was a great moment and I left thinking/hoping that they will remember this if they come across an ME/CFS patient in future.
I went to my appointment with my diabetes specialist and she had two medical students with her.
Although she doesn't have much knowledge of ME/CFS, she is very respectful, accepts that I am ill and that it is not a psychological condition. She first saw me when I was hospitalised in 2011.
When she asked me before the appointment if I would consent to the two students sitting in, I said "great, I can educate them about ME/CFS".
She graciously allowed me to explain my history and what ME/CFS was all about. This took up a fair amount of the appointment.
They have had no training whatsoever about ME/CFS.
I filled them in on what my life was/is like pre and post ME/CFS, the possible triggers (including statins), that it is not a psychological illness, the terrible symptoms, the associated disability, the poor attitudes of the medical profession, the lack of research attention, the uselessness of the CBT and GET approaches, the absence of a cure, the political agendas, how hard it is to live with, why I need a wheelchair and shower chair, why exercise can be harmful, how everything we do is an energy consuming "activity", the realities of pacing eg which day this week can I have a shower or make a phone call, how hard it is to manage diabetes and severe ME/CFS etc etc etc.
They were respectful and attentive. They asked questions. They wrote notes!
All in all it was a great moment and I left thinking/hoping that they will remember this if they come across an ME/CFS patient in future.