Thank you for mentioning the PACE trial. I have long covid and have many friends with ME/CFS who struggle to find treatments and experience pretty awful medical care. I'm glad more people are becoming aware of not only ME/CFS itself, but the issues in treating it.
You mentioning myalgic encephalomyelitis and the PACE trial feels like a strange full circle thing for me. I stumbled upon your blog in 2013, shortly after being told to take a break from my PhD, to find out what was wrong with me and come back well and ready to work in six months. Considering I didn’t know what I was suffering from yet, the fact that there was a six-month waiting list for The Fatigue Clinic and The Fatigue Centre, and that you now know the inanity of the PACE trial that these clinics based their programs on, you know how that turned out. I was lucky to be diagnosed with “chronic fatigue syndrome” relatively swiftly (within months, rather than years like others), and also have the delightful tag-along disabilities fibromyalgia and postural orthostatic intolerance syndrome. I have been housebound and/or bedbound ever since. During the early years of being housebound and reading your blog, I considered volunteering my molecular biology background to help you in your quest to fight misinformation and to make the science of skincare and beauty become more legitimised in the public’s view.
Anyway, if you would like to learn more about ME/CFS and PASC (long Covid-19), there is a lot of information on the Australian peak body, Emerge, website, along with a research digest newsletter of recent ME/CFS, PASC, and other post-viral illness studies summarised by a group of volunteers like myself. If you want to be very outraged, look up the story of Karina Hansen, who was forcibly removed from her home and her family because, at the time, Denmark did not recognise ME as a legitimate illness. It is astounding and infuriating that her removal from home and the PACE trial were so recent (2008 and 2011, respectively) considering how similar the attitude to patients is to that in Victorian times when families would hide their ‘abnormal’ relatives away or send them to insane asylums to get ‘rebooted’.
Always love your sciencey take on skincare. Thanks!
Thank you for mentioning the PACE trial. I have long covid and have many friends with ME/CFS who struggle to find treatments and experience pretty awful medical care. I'm glad more people are becoming aware of not only ME/CFS itself, but the issues in treating it.
You mentioning myalgic encephalomyelitis and the PACE trial feels like a strange full circle thing for me. I stumbled upon your blog in 2013, shortly after being told to take a break from my PhD, to find out what was wrong with me and come back well and ready to work in six months. Considering I didn’t know what I was suffering from yet, the fact that there was a six-month waiting list for The Fatigue Clinic and The Fatigue Centre, and that you now know the inanity of the PACE trial that these clinics based their programs on, you know how that turned out. I was lucky to be diagnosed with “chronic fatigue syndrome” relatively swiftly (within months, rather than years like others), and also have the delightful tag-along disabilities fibromyalgia and postural orthostatic intolerance syndrome. I have been housebound and/or bedbound ever since. During the early years of being housebound and reading your blog, I considered volunteering my molecular biology background to help you in your quest to fight misinformation and to make the science of skincare and beauty become more legitimised in the public’s view.
Anyway, if you would like to learn more about ME/CFS and PASC (long Covid-19), there is a lot of information on the Australian peak body, Emerge, website, along with a research digest newsletter of recent ME/CFS, PASC, and other post-viral illness studies summarised by a group of volunteers like myself. If you want to be very outraged, look up the story of Karina Hansen, who was forcibly removed from her home and her family because, at the time, Denmark did not recognise ME as a legitimate illness. It is astounding and infuriating that her removal from home and the PACE trial were so recent (2008 and 2011, respectively) considering how similar the attitude to patients is to that in Victorian times when families would hide their ‘abnormal’ relatives away or send them to insane asylums to get ‘rebooted’.