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== Advocacy organizations == === Good === * "Advise patients to listen to their bodies and to stop activities before they exceed their tolerance threshold."<ref>{{Cite web | url = http://www.forward-me.org.uk/Reports/NICE-comments-form-2.pdf | title=Consultation on draft scope {{!}} Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (Oct 2020) | last = Forward-ME | first = | authorlink = Forward-ME | date = Jul 2018 | website = |archive-url=|archive-date=|url-status=|access-date=}}</ref> ~ [[Forward-ME]] *"CFS/chronic fatigue syndrome is an absolutely dreadful name for a serious and debilitating neurological illness. It is the equivalent of saying someone with dementia has a chronic forgetfulness syndrome. CFS needs to be placed in the medical dustbin of obsolete names as soon as possible."<ref>{{Cite web | url = https://www.meassociation.org.uk/2015/02/name-change-committee-report-comments-by-dr-charles-shepherd-medical-adviser-me-association-11-february-2015/ | last = Shepherd | first = Charles|website=[[ME Association]] | title = Name change committee report {{!}} Comments by Dr Charles Shepherd | date = 2015-04-11}}</ref> ~ Dr [[Charles Shepherd]], Medical Advisor, [[ME Association]] * "CBT/GET have been proven to be based on non-science for ME and should be removed from any recommendations in the guideline."<ref>{{Cite web | url = http://www.investinme.org/IIMER-Newslet-17-07-04.shtml | title = Response to NICE 10 year surveillance (2017) β Chronic fatigue syndrome/myalgic encephalomyelitis | last = Invest in ME Research | first = | authorlink = Invest in ME Research | date = July 2017 | website = [[Invest in ME Research]]|archive-url=|archive-date=|url-status=|access-date=2019-02-07}}</ref> ~ [[Invest in ME Research]] *"CBT/GET must be dropped as recommendations for treatment of ME."<ref>{{Cite web | url = http://www.investinme.org/IIMER-Newslet-17-07-04.shtml | title = Response to NICE 10 year surveillance (2017) β Chronic fatigue syndrome/myalgic encephalomyelitis | last = Invest in ME Research | first = | authorlink = Invest in ME Research | date = July 2017 | website = [[Invest in ME Research]]|archive-url=|archive-date=|url-status=|access-date=2019-02-07}}</ref> ~ [[Invest in ME Research]] *"The ME that we know has no connection to childhood problems or maternal anxiety but an illness that strikes out of the blue in previously healthy persons."<ref>{{Cite web | url = http://www.investinme.org/IIMER-Newslet-17-07-04.shtml | title = Response to NICE 10 year surveillance (2017) β Chronic fatigue syndrome/myalgic encephalomyelitis | last = Invest in ME Research | first = | authorlink = Invest in ME Research | date = July 2017 | website = [[Invest in ME Research]]|archive-url=|archive-date=|url-status=|access-date=2019-02-07}}</ref> ~ [[Invest in ME Research]] *"The PACE Trial is null science, bad science, discredited science, its worth is only to demonstrate how research should not be conducted."<ref>{{Cite web | url = http://www.investinme.org/IIMER-Newslet-17-07-04.shtml | title = Response to NICE 10 year surveillance (2017) β Chronic fatigue syndrome/myalgic encephalomyelitis | last = Invest in ME Research | first = | authorlink = Invest in ME Research | date = July 2017 | website = [[Invest in ME Research]]|archive-url=|archive-date=|url-status=|access-date=2019-02-07}}</ref> ~ [[Invest in ME Research]] *"By having a role on the [PACE trial] Steering Committee and Management Group, there was a de facto endorsement of the use of Β£5m of research funding to focus on behavioural treatments. Neither I nor the current Board of Trustees would agree to do this now, as reflected by our current research strategy, the focus of which is collaborative biomedical research. :I am sorry that the charity did not advocate for this considerable level of funding to be invested in biomedical research instead. It was never our intention to contribute to any stigma or misunderstanding about the illness and I sincerely apologise to those who feel that, in not speaking out sooner and more strongly, we have caused harm."<ref>{{Cite web | url = https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/ | title = The PACE trial and behavioural treatments for M.E. | last = Chowdhury | first = Sonya | authorlink=Sonya Chowdhury | date = Aug 29, 2017 | website = Action for ME|archive-url=https://web.archive.org/web/20180829192602/https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/|archive-date=2018-08-29|url-status=dead|access-date=2019-02-09}}</ref> ~ Sonya Chowdhury, Chief Executive, [[Action for ME]] (statement later deleted) *"Public money is being wasted on research that will be of little benefit and may actually be harmful to ME patients. It is about time serious money was spent on the pathology of this devastating illness."<ref>{{Cite web | url = https://www.meassociation.org.uk/2007/06/mea-support-statement-on-wasteful-research/ | title = MEA support statement on wasteful research | last = ME Association | first = | authorlink = ME Association | date = Jun 2007 | website = [[ME Association]]|language=en-US|others=|archive-url=|archive-date=|url-status=|access-date=2019-03-04|quote="Public money is being wasted on research that will be of little benefit and may actually be harmful to ME patients. It is about time serious money was spent on the pathology of this devastating illness." - [[Simon Lawrence]], [[25 Percent ME Group]]}}</ref> ~ [[Simon Lawrence]], [[25 Percent ME Group |25% ME Group]]
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