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NICE guidelines
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==Move to static list (2013)== On September 2013 NICE placed the CFS/ME guidelines CG53 on a static list and confirmed they won't be reviewing them,<ref>{{Cite web|url=https://meassociation.org.uk/2013/09/nice-confirm-they-wont-be-reviewing-their-guideline-on-mecfs-any-time-soon-unless-26-september-2013/ | title = NICE confirm they wonβt be reviewing their ME/CFS Guideline any time soon, unless... {{!}} 26 September 2013 | last = The ME Association | first = | authorlink = The ME Association | date = 2013-09-26 | website = |language=en-GB|archive-url=|archive-date=|access-date=2021-12-09}}</ref> this then led to protests from patients, researchers and clinicians; and a guideline review was announced in September 2017. There were considerable concerns raised on 2013. The [[Countess of Mar]] and [[Forward-ME]] said "We express our extreme concern over this proposal and strongly feel that the guideline must remain on the active list for the following reasons. Medical and scientific advances in relation to ME and CFS are taking place very rapidly." This was a joint letter was signed by a number of ME Charities.<ref name="MEA2013">{{Cite web|url=https://meassociation.org.uk/2013/10/countess-of-mar-group-joins-chorus-of-condemnation-against-nice-plan-to-do-nothing-28-october-2013/ | title = Countess of Mar group condemn NICE plan to do nothing with ME/CFS Guideline review {{!}} 28 October 2013 | last = The ME Association | first = | authorlink = The ME Association | date = 2013-10-28 | website = [[The ME Association]]|language=en-GB|archive-url=|archive-date=|access-date=2021-12-09}}</ref> The [[ME Association]] opposed the plan to place it on static list and wrote a submission with four reasons including that "Along with most other ME/CFS charities, and people with ME/CFS, we have been unable to endorse the current NICE guideline."<ref name="MEAOct2013">{{Cite web|url=https://meassociation.org.uk/2013/10/mea-opposes-plan-to-put-review-of-nice-mecfs-guideline-on-hold-23-october-2013/ | title = MEA opposes plan to put review of NICE ME/CFS Guideline on hold {{!}} 23 October 2013 | last = The ME Association | first = | authorlink = The ME Association | date = 2013-10-23 | website = [[The ME Association]]|language=en-GB|archive-url=|archive-date=|access-date=2021-12-09}}</ref> Patients and patient advocacy groups are not in favor of the NICE guidelines and on June 25th 2014 the [[Forward-ME]] Group met with Prof Mark Baker, Director of the Centre for Clinical Practice at the National Institute for Health and Clinical Excellence (NICE)]. Professor Baker that the [[ME/CFS]] Guideline did not meet patient needs nor those of NICE. He said the Guideline did not promote innovation and only a "passive" intervention such as CBT and Graded Exercise. "There was not much of an evidence base to go on, and in NICE it was evidence that drove guidance."<ref name="wames2014">{{Cite web | last = Welsh Association of ME & CFS Support | authorlink = Welsh Association of ME & CFS Support|url=http://wames.org.uk/cms-english/2014/07/nice-admits-cfsme-guideline-does-not-meet-the-need/|quote=On June 25th 2014 the Forward ME Group met with Prof Mark Baker, Director of the Centre for Clinical Practice at the National Institute for Health and Clinical Excellence (NICE). | date = Jul 2014 | title = NICE admits CFS/ME guidelines don't meet the needs of patients}}</ref> [[Doctor Speedy]] weighs in with ''Is it NICE guidelines or NONSENSE guidelines?'' and the [[ME Association]]'s Dr. [[Charles Shepherd]] pointed out during a meeting with Dr. Martin McShane of [[National Health Service|NHS]] England "that graded exercise therapy was causing harm to patients and that if a drug was causing harm, guidelines would be reviewed immediately."<ref>{{Cite web|url = http://niceguidelines.blogspot.com/2007/09/is-it-nice-guidelines-or-nonsense.html | date = Sep 2007| title = Is it NICE guidelines or NONSENSE guidelines?}}</ref><ref>{{Cite web|url=https://www.meaction.net/2015/10/10/forward-me-turn-up-the-heat-on-the-mecfs-nice-guideline/ | title = Push to change ME/CFS NICE guideline | date = 2015-10-10 | last = The MEAction Network|url-status=dead|website=The MEAction Network|language=en-US|access-date=2021-11-06}}</ref> A FOI request to NICE about the US developments was submitted to NICE in 2016 and they responded to it in 2016 in which they dismissed foreign work on ME/CFS.<ref name="MEA2016">{{Cite web|url=https://meassociation.org.uk/2016/10/nice-takes-a-dim-view-of-foreign-work-on-mecfs-robin-ellis-freedom-of-information-request-24-october-2016/ | title = NICE takes a dim view of foreign research into ME/CFS {{!}} Robin Ellis Freedom of Information request {{!}} 24 October 2016 | last = The ME Association | first = | authorlink = The ME Association | date = 2016-10-24 | website = [[The ME Association]]|language=en-GB|archive-url=|archive-date=|access-date=2021-12-09}}</ref>
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