Speeches from the front lines of #MillionsMissing: L.A. Cooper

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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.

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1 thought on “Speeches from the front lines of #MillionsMissing: L.A. Cooper”

  1. Resistance is never futile.
    I was dx with PVFS in 97. That first year of it being named I had a multitude of different infections, virus’s and allergies to things I was previously ok with including penicillin. I’m down to two types of antibiotics now.
    The year I was dx UK central government issued a dictat that people with cfs/pvfs/ME were to be dx and treated in Primary Care so I received no tests beyond basic blood tests and was sent for no investigations. The bloods came back with elevated lymphocytes, vit D deficiency, inflammatory markers and high cholesterol I was 26. My GP didn’t bother to explain what any of these things meant and didn’t treat me. At the same time I had extensive endometriosis and back pain that gradually got to the point that I asked for a referral and sent to an orthopaedic surgeon who decided without the need for x rays or scans that I had no functional abnormality and that instead I was suffering from a somatisation disorder and sent on my way.
    I got sicker and sicker and wracked with agonising pain and 3 years later demanded my GP refer me back for an MRI. I didn’t realise I could have asked for a second opinion or in fact complained about my treatment, didn’t have the strength anyway.
    I got my MRI and to cut a long story short it showed spinal stenosis, degenerative disc disease, nerve root impingement and crumbling facet joints. So not all on my head after all, but I believe if I didn’t have pvfs on my referral I would have been assessed and examined and at least x-rayed.
    A few more years of everything being in my head and I stopped telling consultants about my ME because I knew it would negatively impact on my treatment. However after millions missing I’ve got angry all over again. I’ve had enough of being silenced, shut away and not treated. I’m angry all over again in fact I’m bloody furious that people are being subjected to ineffectual and dangerous treatment in 2016 and we are right to demand better!

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