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Talk:Primer for journalists
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==Things to cover == * Intro - ME/CFS not always ''lifelong'', references needed here - seems like most who recover do within 18 months to 2 years - it's usually described as not lifelong (meaning acquired), plus multi-systemic and incurable * '''Unfortunately a psychiatric approach''' - needs explanation since it can be interpreted as anti-psychiatry, should it also say '''instead of a biomedical approach''' - people need to understand that the consequences are severe and that this approach is behavioral and about challenging thoughts - some of those thoughts having significant scientific evidence that they are facts... the MUPS approach of denying medical care and investigation of further symptoms is not found in general psychiatry - neither is the argument that removing sickness benefits improves health <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>[https://www.meassociation.org.uk/2019/04/forward-me-and-oxford-brookes-university-announce-results-of-patient-survey-on-cbt-and-get-in-me-cfs-03-april-2019/ Recent UK survey of over 2000 patients], see MEAction blog for custom graphs, <ref name="Nodecisions">{{Cite web|url=http://www.meassociation.org.uk/wp-content/uploads/2015-ME-Association-Illness-Management-Report-No-decisions-about-me-without-me-30.05.15.pdf | title =ME/CFS Illness Management Survey Results - βNo decisions about me without meβ Part 1 | last = | first = | date = May 2015 | website = meassociation.org|publisher=ME Association|archive-url=|archive-date=|url-status=|access-date=}}</ref>[http://www.meassociation.org.uk/wp-content/uploads/2015-ME-Association-Illness-Management-Report-No-decisions-about-me-without-me-30.05.15.pdf No decisions about ME - NE Association report, 2015] *Stereotypes assumptions often found in the media that aren't addressed here are the assumption that all patients / patient groups believe it's caused by a virus, and an anti-psychiatry theme which is presented as anti-science, rather than the pro-science and vast support for scientists from patients and their families (including of course Ron Davis) and [[Invest in ME Research]] science research center in Norfolk / Norfolk * What about a graph or two on patient harm from GET & CBT * '''Neurological disease''' not mentioned - also disease has a specific meaning involving an underlying disease prices, illness does not imply an underlying disease process)[https://icd.who.int/browse10/2016/en#/G93 World Health Organization ref] *[[ME Awareness Day]] and [[Severe ME Awareness Day]] could get a mention here * The many pro-science patient groups, patient funded research plus Science4ME and Phoenix Rising could get a mention * Biomarkers could do with a nanoneedle mention - we have a page on this study *Pages that could be linked to **[[Cognitive behavioral model]] **[[Stigma and discrimination]] **[[Ethical issues]] **[[Causes of death]] **[[Severe and very severe ME]] **[[PACE trial]] and [[Intimidation and harassment of PACE trial critics]] *[[ME activists and advocates]] ===Possible references=== [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 12:43, August 2, 2019 (EDT) ===Re: Things to cover -- ~~~~=== : Replace this text with your reply
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