Thank you. I’m terrified at the progression of this disease in me so far and even more so at the prospect of who will be ‘helping’ me if I end up in hospital due to it.
Thank-you Hillary - this is essential information, not just for those of us in the M.E. community, but for the general public and for health authorities.
Sadly, as you write in the article (I paraphrase), we have been disappointed (let alone abused) so many times over the decades that we are never surprised by such bad news as the UK "plan but no money" announcement.
I am a natural optimist but after 35 and 1/2 years of M.E. and so much bad history and repeated let-downs by those whose job is to help us, it is getting harder and harder to hope for change.
Many thanks again for documenting all of this and for reminding people. Your preservation of all this history has to one day lead to some kind of reckoning.
Thank you Allison. I hate to say it but I agree with your assessment of the state of ME. I had never heard of this disease when I fell ill in February 1986. Sounds ridiculous, but I actually believed back then that the world simply had to be informed about this disease, and the government would respond appropriately. How naive I was. The cobbling together of every "chronic" malady under the sun in recent years as if they share the same pathology has been disastrous for ME. The dismantling of federal agencies in the US, anyway, may push things into the Stone Age (instead of toward resolution). But there has to be some merit for medical historians and medical ethicists and documentarians of the future to have available to them a bit of history in order to understand how things went so wrong. And there are still many voices in the ME world who continue to speak up and lobby and fight.
Thank you so much again for this excellent article!
Thank you for this excellent overview.
Thank you. I’m terrified at the progression of this disease in me so far and even more so at the prospect of who will be ‘helping’ me if I end up in hospital due to it.
Thank-you Hillary - this is essential information, not just for those of us in the M.E. community, but for the general public and for health authorities.
Sadly, as you write in the article (I paraphrase), we have been disappointed (let alone abused) so many times over the decades that we are never surprised by such bad news as the UK "plan but no money" announcement.
I am a natural optimist but after 35 and 1/2 years of M.E. and so much bad history and repeated let-downs by those whose job is to help us, it is getting harder and harder to hope for change.
Many thanks again for documenting all of this and for reminding people. Your preservation of all this history has to one day lead to some kind of reckoning.
Thank you Allison. I hate to say it but I agree with your assessment of the state of ME. I had never heard of this disease when I fell ill in February 1986. Sounds ridiculous, but I actually believed back then that the world simply had to be informed about this disease, and the government would respond appropriately. How naive I was. The cobbling together of every "chronic" malady under the sun in recent years as if they share the same pathology has been disastrous for ME. The dismantling of federal agencies in the US, anyway, may push things into the Stone Age (instead of toward resolution). But there has to be some merit for medical historians and medical ethicists and documentarians of the future to have available to them a bit of history in order to understand how things went so wrong. And there are still many voices in the ME world who continue to speak up and lobby and fight.