As many folk now know, I have recently been selected to sit on the NICE Guideline Development Group for ”ME/CFS” as a lay member.
I have therefore decided, that I will put both this blog and the associated “Just ME” Facebook page, into hibernation for the duration of my service on the group.
I am still contactable via private messages, and I will still be around on social media, even if I say less out loud.
Onwards and Upwards
Sally K Burch
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The Nice guidelines are on ME/CFS which seems to be a stupid term for Chronic Fatigue Syndromes as it's using SEID criteria. Myalgic Encephalomyelitis is clearly a completely separate illness. A patient who's had an acute Enteroviral Encephalomyelitis has the illness of M.E.. A patient who hasnt had an acute Brain and Spinal Cord Infection by an enterovirus doesn't even have the illness of M.E.. The SEID (i.e. CFS) guidelines cant be used in regards to acute brain and spinal cord infections; where the patient needs to be immediately hospitalised upon onset for diagnosis and an attempt at trying to avoid chronic or even permanent illness. The new ME/CFS guidelines; are not appropriate for (enteroviral) illness at all. Byron Hyde's Nightingale Research Definition defines the illness of Myalgic Encephalomyelitis. People who do not meet this definition; do not even have M.E.. The new Nice guidelines are dangerous for genuine M.E. Patients or any patient with an acute encephalitic brain injury. Completely Crazy. Designed in a manor that will lead to harm. Only an idiot would of signed this guideline off as okay and suitable.
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