Myalgic Encephalomyelitis (ME) commonly called chronic fatigue syndrome (CFS or ME/CFS) 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 [1]. People with ME have a measurably lower quality of life than people with Stroke, Cancer, Heart disease, Multiple Sclerosis, Rheumatoid arthritis [2a,2b]. ME is not taught in most medical schools despite it affecting 15-30 million worldwide [1] [3] [4].
The WHO classified ME as neurological in 1969 but 80% of doctors still believe its psychosomatic [5,5a]. 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 [6].
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 [7]. NICE is currently updating its guidance, which is expected in October 2020 [8]. The Centers for Disease Control and Prevention (CDC) in the US dropped Graded Exercise and Cognitive Behavioural Therapy as treatments for ME in 2017 [9].
Patient surveys consistently report that Graded Exercise makes over 50% of patients worse [10]. “In the absence of effective treatments, patients who are given a period of enforced rest from the onset have the best prognosis” [11]. Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management” [12].
NOTE
Read about my story and a disclaimer in the about section of this channel.
REFERENCES
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[5]
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[5a]
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CREDITS
Linda Tannenbaum - Open Medicine Foundation (OMF)
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Dr Anthony Komaroff MD
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Professor Dane Cook speaking at Solve CFS
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Professor Maureen Hanson speaking at RME Sverige
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Dr Lucinda Bateman speaking at RME Sverige
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Dr Lily Chu speaking at Solve CFS
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Stacey Poole
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Dr Ron Davis speaking at Emerge Australia
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Dr Anthony Komaroff
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Dr Nina Muirhead - The ME Show
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Dr John Chia - ME/CFS Alert
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Annette - BBC Breakfast
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Emma - You and Yours - BBC Radio 4
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Dr Nigel Speight
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Dr Charles Shepherd
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Patient crash
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Patient Relapse
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Blogs
Anil Van der Zee
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Hannah Radenkova
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Amy Harbottle
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Laura Elliot
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Daniel Moore
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Laura Chamberlain
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Jessica Taylor-Bearman
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Martin - Paused ME Vlog
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#MyalgicEncephalomyelitis #ME #ChronicFatigueSyndrome #CFS #MECFS
