This is how the very worst of medicine and M.E patient activism treats M.E patients:
Ignore reports of harm.
Put them in the box.
Close the box.
Put them in the box.
Close the box.
M.E is a very strange and terrible illness. Over the course of 35 years I found the simplest of my expectations betrayed over and over and over again.
I expected to be helped my doctors, not treated as a liar.
I expected to be looked after by all of my family and my society, not left without enough food.
I expected M.E charities to stand up against bullying of M.E patients, not actively suppress the information for years.
I expected journalists to ask questions, not bolster preconceptions with selective evidence.
I expected professors to support science and free discussion, not to promote abuse, engage in personal attacks and disregard reports of harm.
I guess, fundamentally. I expected to be well. I expected to be a doctor. So perhaps the greatest betrayal came from my own body.
It is strange though. I felt hated by doctors just for being incurably ill. A physician wrote to me in the 1990s agreeing that his profession had a tendency towards "blaming the patient" in regard to M.E. And, to be clear, I already know, I have already been told, that the problem in medicine runs far, far, deeper than this.
Nowadays; things are different for me, though they are equally strange. I feel hated by patients just for being well. Yeah, I recovered. Can't they be happy for me? I am also hated for saying that M.E patients shouldn't be abused by M.E activists. And it is this view that has brought down the most ire upon me. The founder of an M.E charity wrote that I was to be left to be bullied indefinitely so as to protect the work of activism as a whole. As with medicine the problem here runs deep.
It is hard to determine how best to treat M.E patients from within a casket sealed by multiple M.E charities, activists and researchers. But, you know, I managed to get my body to recover from M.E, so, you never know, you may get lucky too.
I expected journalists to ask questions, not bolster preconceptions with selective evidence.
I expected professors to support science and free discussion, not to promote abuse, engage in personal attacks and disregard reports of harm.
I guess, fundamentally. I expected to be well. I expected to be a doctor. So perhaps the greatest betrayal came from my own body.
It is strange though. I felt hated by doctors just for being incurably ill. A physician wrote to me in the 1990s agreeing that his profession had a tendency towards "blaming the patient" in regard to M.E. And, to be clear, I already know, I have already been told, that the problem in medicine runs far, far, deeper than this.
Nowadays; things are different for me, though they are equally strange. I feel hated by patients just for being well. Yeah, I recovered. Can't they be happy for me? I am also hated for saying that M.E patients shouldn't be abused by M.E activists. And it is this view that has brought down the most ire upon me. The founder of an M.E charity wrote that I was to be left to be bullied indefinitely so as to protect the work of activism as a whole. As with medicine the problem here runs deep.
It is hard to determine how best to treat M.E patients from within a casket sealed by multiple M.E charities, activists and researchers. But, you know, I managed to get my body to recover from M.E, so, you never know, you may get lucky too.
