What is ME/CFS? (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

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
[1] http://researchbriefings.files.parliament.uk/documents/CDP-2019-0014/CDP-2019-0014.pdf
[2a] https://www.ncbi.nlm.nih.gov/pubmed/26147503/
[2b] https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-11-402
[3] http://www.hrpub.org/download/20131107/UJPH4-17600991.pdf
[4] https://www.meaction.net/about/what-is-me/
[5]
https://drive.google.com/file/d/1R6MgsNuEjdj1fsfJds5bJ2MAACSogOXn/view?usp=drivesdk
[5a]
https://podcasts.apple.com/gb/podcast/episode-four-dr-nigel-speight/id1374903449?i=1000430064953 (4 mins 50)
[6] http://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf
[7] https://www.rcplondon.ac.uk/news/do-you-really-believe-me
[8] https://www.nice.org.uk/guidance/indevelopment/gid-ng10091
[9] https://www.meassociation.org.uk/2017/07/cdc-removes-cbt-and-get-as-recommended-treatments-for-mecfs-11-july-2017
[10] https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
[11] https://www.mdpi.com/2075-4418/9/4/124/htm
[12] https://www.meassociation.org.uk/wp-content/uploads/2015-ME-Association-Illness-Management-Report-No-decisions-about-me-without-me-30.05.15.pdf

TWITTER:  https://twitter.com/ABrokenBattery

CREDITS
Linda Tannenbaum - Open Medicine Foundation (OMF)
https://youtu.be/3vhtcbq_iX4
Dr Anthony Komaroff MD
https://youtu.be/hRdn4A2SGic
Professor Dane Cook speaking at Solve CFS
https://youtu.be/vfmrPd4-rIE
Professor Maureen Hanson speaking at RME Sverige
https://youtu.be/uWjJMzZTtvI
Dr Lucinda Bateman speaking at RME Sverige
https://youtu.be/sXxrBWS-B7g
Dr Lily Chu speaking at Solve CFS
https://youtu.be/hxJPrkWHcBo
Stacey Poole
https://youtu.be/yrBAlKtroBw
Dr Ron Davis speaking at Emerge Australia
https://youtu.be/HHhY_CQ8Xbk
Dr Anthony Komaroff
https://www.capeandislands.org/post/thousands-studies-paint-new-picture-chronic-fatigue-syndrome
Dr Nina Muirhead - The ME Show
https://player.fm/series/the-me-show/episode-eight-dr-nina-muirhead
Dr John Chia - ME/CFS Alert
https://youtu.be/NhU-G0loqtY
Annette - BBC Breakfast
https://youtu.be/0uUxL9My1bc
Emma - You and Yours - BBC Radio 4
https://www.bbc.co.uk/sounds/play/b095ptl7
Dr Nigel Speight
https://youtu.be/XgBSZtc-NpU
Dr Charles Shepherd
https://youtu.be/tIIHfdmUwCQ
Patient crash
https://youtu.be/lnAzwtw7gS0
Patient Relapse
https://youtu.be/l0D0MYTUP8U

Blogs
Anil Van der Zee
http://anilvanderzee.com/
Hannah Radenkova
http://superpooped.blogspot.com
Amy Harbottle
https://www.treatably.co.uk/
Laura Elliot
https://medium.com/@lcelliott2
Daniel Moore
https://thelowsideblog.com
Laura Chamberlain
https://laurachamberlain.co.uk
Jessica Taylor-Bearman
http://www.jaytay.co.uk/
Martin - Paused ME Vlog
https://www.instagram.com/p/B3FQ8jvChv9/

#MyalgicEncephalomyelitis #ME #ChronicFatigueSyndrome  #CFS #MECFS

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