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Primer for family, friends and care providers
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===Controversy=== [[File:J Brea TED.JPG|200px|thumb|right|[[Jen Brea|Jennifer Brea]] is an [[United States|American]] who was studying at Harvard; while on a trip to [[Kenya]] she became very ill with what would eventually be diagnosed as [[ME/CFS]]. Brea began experiencing [[Nervous system|neurological]] problems. Her neurologist diagnosed her with "conversion disorder" ([[hysteria]]). When walking home from his office, she collapsed. [[Severe and very severe ME|Jen then needed to use a wheelchair]], keeping her legs up due to [[Postural orthostatic tachycardia syndrome|POTS]], as her blood pools into her legs]]. Psychiatry has taken an [[Psychologization|inappropriate lead]] and treatment path for an organic biological disease, although this is now changing. In the UK, [[graded exercise therapy]] (GET) and [[cognitive behavioral therapy]] (CBT) were employed by ME/CFS Clinics until 2021.<ref name="ng206">{{Cite web|url=https://www.nice.org.uk/guidance/ng206 | title = Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome:diagnosis and management. NICE guideline. | last=NICE Guideline Development Group | first = | authorlink = |publisher=[[National Institute for Health and Care Excellence]]| date = 2021-10-29}}</ref> Exercise or stepped increases in activity exacerbates symptoms and were found to harm most patients, so this treatment is now advised against.<ref name="OxfordBrookesSurvey">{{Cite web|url = https://www.meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outcomes-CBT-and-GET-Final-Consolidated-Report-03.04.19.pdf|title =Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes. FINAL REPORT | last = Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS)|location=Oxford Brookes University | date = Feb 27, 2019}}</ref><ref name="ng206"/> [[Depression]] and anxiety drugs have been utilized, but are ineffective.<ref name="myhill">{{Cite web|url=http://drmyhill.co.uk/wiki/CFS_or_depression_-_what_are_the_differences | title = CFS or depression - what are the differences - DoctorMyhill | last = Myhill | first = Sarah| date = |website=drmyhill.co.uk|language=en|archive-url=|archive-date=|access-date=2018-09-07}}</ref> Treating a biological disease as a mental illness is not cost effective. The drugs are inexpensive and [[biomedical research]] is not pursued. People struck down and disabled with ME/CFS are labeled with a mental health issue; disability insurance having clauses excluding a mental illness kick in [[ethical issues|stopping any payment]] or shortening the payout time-frame.<ref>{{Cite web|url=http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/ | title = Trial by Error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really? | last = Tuller | first=David| date = Nov 17, 2015 | website = [[Virology blog]]|language=en-US|archive-url=|archive-date=|access-date=2018-09-07}}</ref><ref>{{Cite web|url=https://www.psychologytoday.com/blog/turning-straw-gold/201212/physical-illnesses-may-soon-be-labeled-mental-disorders | title = Physical Illnesses May Soon Be Labeled “Mental Disorders” | last = Bernhard | first=Toni | date = Dec 27, 2012 | website = Psychology Today|language=en-US|archive-url=|archive-date=|access-date=2018-09-07}}</ref><ref>{{Cite web|url=http://www.theguardian.com/society/2004/apr/28/equality.mentalhealth | title = People with mental illness face widespread discrimination | last = Batty | first = David| date = 2004-04-28 | website = the Guardian|language=en|access-date=2018-09-07}}</ref><ref>{{Cite news | url=http://thoughtsaboutme.com/2016/03/21/keep-an-eye-on-your-walitt-nih-study-poses-dramatic-risk-to-long-term-disability-benefits/ | title = Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits| date = 2016-03-21|work=Thoughts About M.E.|access-date=2018-09-07|language=en-US}}</ref> ==== Graded exercise therapy & Cognitive behavioral therapy ==== [[File:Emma Shorter.JPG|400px|thumb|right|[[Emma Shorter]], is a citizen of [[Scotland]]. Here, she gives testimony before Parliament's Petitions Committee on [[GET]] and how it put her in a wheelchair]] GET and CBT are usually employed in the UK, Ireland and some parts of Europe through ME Clinics. They are highly controversial and not recommended by patients, most patient advocates, and research organizations nor by many doctors or researchers outside of the UK. Based on the flawed [[PACE trial]] which used the flawed [[Oxford criteria]] to diagnose and recruit patients, GET and CBT found its way into treating people with ME/CFS. [[Exercise]], especially GET, can injure an ME/CFS patient further. *[[Jennifer Brea]] walked home from her Neurologist's office and became wheelchair bound. *This is an experience of serious injury due to GET shared [https://twitter.com/TomKindlon/status/846425974052966400 by K. Miles, via Tom Kindlon on Twitter]. *[[Emma Shorter]] was able to walk a few minutes a day until GET put her in a wheelchair. *[[Doctor Speedy]] was also seriously injured by GET.
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