What is ME?

 

 
Video produced by A Broken Battery 
 
From the description on the webpage– 
 
ME is “a life-altering debilitating disease affecting the brain, the immune system and energy metabolism. The defining symptom of ME is that even minimal exertion can cause a flare in symptoms (a crash) that can last for days, weeks or even months.
 
Severity ranges from mild to very severe. Around 25% are house or bedbound, unable to properly care for themselves, sometimes for many years or decades at a time. The majority of severely affected patients are unable to access any services and are not offered home visits or specialist inpatient care. People with ME have a lower quality of life than people with Stroke, Cancer, Heart disease, Multiple Sclerosis, Rheumatoid arthritis. ME is not taught in most medical schools despite it affecting 15-30 million worldwide.
 
The WHO classified ME as neurological in 1969 but 80% of doctors still believe its psychosomatic. Many doctors still don’t know that over the last 35 years there have been over 9000 scientific publications that compared people with the illness to healthy people and they find a whole variety of abnormalities, like energy metabolism.
 
Dr Nina Muirhead ME Patient and Specialist Surgeon in Dermatology – The NICE guidelines “do not fit” with the patient experience and “perpetuated my misunderstanding” of ME by recommending Cognitive Behavioural Therapy and Graded Exercise. NICE is currently updating its guidance, which is expected in October 2020. The  Centers for Disease Control and Prevention (CDC) in the US dropped Graded Exercise and Cognitive Behavioural Therapy as treatments for ME in 2017.
 
Patient surveys consistently report that Graded Exercise makes over 50% of patients worse. “In the absence of effective treatments, patients who are given a period of enforced rest from the onset have the best prognosis”. Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management”.
 
(See the webpage at the address above for references.)

 

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