Hello, and a very warm welcome to #MillionsMissing London. My name is L.A. Cooper, I founded and run Change For M.E. Change For Us. We are middle representatives of this global movement; Melbourne kicked things off at 12pm their time (which is around 2am, 3am GMT, I believe) and Canada and USA follow us later today in just a few hours’ time.
It was never explained to me, as a child with M.E., that this community existed. It was never explained to me that there was such a large, open community willing to better the lives of complete strangers living with this condition, and to fight for a better outlook for those who are yet to contract it.
During these next two hours, we stand, sit or lie down to represent the #MillionsMissing. The millions of pounds missing from funding into biological research of M.E. To represent the millions of medical professionals who have no true comprehension of the depth and gravity of this disease, and who are unable to treat, support and care for their patients. We are here to represent the millions of M.E. sufferers across the globe who are missing from their education, their careers, their ability to contribute to society… who are missing from their families, their social lives, their love lives and milestones which others take for granted… who are missing from their childhoods, their adolescence, their adulthoods, who are missing from this protest.
We, the patient-body, respectfully and resolutely refuse to comply. We refuse to comply with CBT and GET as forms of a curative treatment. We refuse to comply with the acceptance of the PACE Trial data. We refuse to comply with the vicious circle of bad science leading to bad journalism, making way for bad science again. We refuse to comply with the medieval attitudes, actions and behaviours towards this modern medical mystery.
We are not our disease. We are the resistance against the stigma against our disease. And we’re not going anywhere.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the