The Lived Experience of Severe ME
(voted one of the top 50 ME blogs on the internet 2017.)
Regarding the New NICE guideline on ME/CFS
Get link
Facebook
X
Pinterest
Email
Other Apps
This is to inform the ME community that I did not feel able to contribute, after all, an expert testimony, to the new guideline on ME/CFS and have regrettably withdrawn from the process.
By Diane I'm not sure where to start but this is my story so far. My name is Diane and I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic enceplalomyelitis. For Lili, M.E. didn't come slowly. It very rudely crashed into her life and very quickly stole her health, taking bigger and bigger chunks of it as she deteriorated. It all began when she experienced a gastric-flu virus of a sort she had never experienced before because this time she never regained her health. A couple days later, she woke up with agonising head pain 'like her brain was on fire', with severe neck pain – she also couldn't move her neck, and her whole body was paralysed. She's not sure how long she stayed like this as she was in and out of consciousness but she truly felt that she was going to die because her body was undergoing an extreme crisis. To cut a long story short, it took a year to get a diagnosis durin...
There's an argument that goes something like this : “ In the real world almost all ME/CFS research is carried out on people with Fukuda CFS ...the only way to sort out the ME/CFS mess is to identify clinical and pathological sub-groups under the ME/CFS umbrella. ” We could identify it as the pragmatic argument. Except, what has " pragmatism" ever done for us ? In the USA, decades of “pragmatism” has arguably led to the 1% growing richer and the remaining 99% fighting for their scraps. As Fishoutofwater comments : What have "pragmatic" Democrats done for us in the past decade? They signed off on a disastrous war in Iraq that drained the treasury leaving America trillions in debt. They signed off on deregulation of banks and financial firms leading to the greatest economic failures since the Great Depression. And they signed away our freedoms when they supported the Patriot Act. "Pragmatic" Democrats ..sold our health care...
Think about this for a moment- how difficult do you think it might be to maintain any kind of hope, if you were seriously physically ill, with multi- system dysfunction, for decades on end, yet you had no way of finding out what is going so fundamentally wrong, physiologically, in your body ? How would it be if you were not taken seriously by main-stream medicine or even if you were, the answers were still not forthcoming? What if your horrendous physical illness was consistently misinterpreted as just unexplained fatigue without any underlying pathology? What if you were harmed, sometimes for years or forever, by any and every intervention tried, because the physiological insight pertinent to your illness,is missing, so it cannot be taken into account? What if you were left to “just get on with it”, in the most intense, disabling, horrendous pain and agony, becoming more and more isolated and invisible? What if it was safer for you to not engage with people than to ...
Comments
Post a Comment