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==NICE Guidelines for CFS/ME - CG53 (2007) == The NICE guideline for CFS/ME (CG53) for the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) were published in August 2007. They are used by the [[NHS]] and other medical professionals in the [[United Kingdom|UK]] for diagnosing and treating [[CFS/ME]]. ===Authors=== The CFS/ME guideline development group consisted of the following members: Richard Baker, [[Jessica Bavinton]], [[Esther Crawley]], Tony Downes, Richard Eddleston, Ute Elliot, Richard Grünewald, William Hamilton, Judith Harding, Frederick Nye, Amanda O'Donovan, [[Alastair Santhouse]], Julia Smedley, David Vickers, Gillian Walsh, Carol Wilson, Philip Wood, Gary Britton, Stefanie Kuntze, Elizabeth Shaw, Nancy Turnbull, and [[Tanya Harrison]].<ref name="CG53members">{{Cite web|url=https://www.nice.org.uk/guidance/CG53/documents/chronic-fatigue-syndrome-myalgic-encephalomyelitis-gdg-members-declaration-of-interests2 | website = [[National Institute for Health and Care Excellence]] | title = GDG Members' Declaration of Interests}}</ref> ===<span id="2007">NICE Definition (2007-Oct 2021)</span>=== Healthcare professionals should consider the possibility of CFS/ME if a person has: *[[fatigue]] with all of the following features: **new or had a specific [[onset]] (that is, it is not lifelong) **persistent and/or recurrent **unexplained by other conditions **has resulted in a substantial reduction in activity level **characterised by [[post-exertional malaise]] and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days) '''and''' *one or more of the following symptoms: **[[Sleep dysfunction|difficulty with sleeping]], such as [[insomnia]], [[hypersomnia]], [[unrefreshing sleep]], a disturbed sleep–wake cycle **[[myalgia|muscle]] and/or [[arthralgia|joint pain]] that is multi-site and without evidence of inflammation **[[headache]]s **[[painful lymph nodes]] without pathological enlargement **[[sore throat]] **[[cognitive dysfunction]], such as difficulty thinking, [[attention deficit|inability to concentrate]], [[memory problems|impairment of short-term memory]], and difficulties with word-finding, planning/organising thoughts and information processing **[[post-exertional malaise|physical or mental exertion makes symptoms worse]] **general malaise or [[flu-like symptoms|"flu-like" symptoms]] **[[dizziness]] and/or [[nausea]] **[[heart palpitation|palpitations]] in the absence of identified cardiac pathology Healthcare professionals should be aware that the symptoms of CFS/ME fluctuate in severity and may change in nature over time. Signs and symptoms that can be caused by other serious conditions (‘red flags’) should not be attributed to CFS/ME without consideration of alternative diagnoses or comorbidities. In particular, the following features should be investigated: *localising/focal neurological signs *signs and symptoms of inflammatory [[arthritis]] or connective tissue disease *signs and symptoms of cardiorespiratory disease *significant [[weight loss]] *[[sleep apnea]] *clinically significant lymphadenopathy A diagnosis should be made after other possible diagnoses have been excluded and the symptoms have persisted for: *4 months in an adult *3 months in a child or young person; the diagnosis should be made or confirmed by a paediatrician The diagnosis of CFS/ME should be reconsidered if none of the following key features are present: *[[post-exertional malaise|post-exertional fatigue or malaise]] *[[cognitive dysfunction|cognitive difficulties]] *[[sleep disturbance]] *[[chronic pain]]<ref name="CG53-evidence">{{Cite web|url=https://www.nice.org.uk/guidance/cg53/evidence/full-guideline-196524109 | title = NICE Guidelines for CFS/ME: diagnosis and [CG53]}}</ref> ===Criticism and controversy=== Charities and patient groups condemned the guidelines as "unfit for purpose". The submissions were from: ====[[Invest in ME]] Submission==== *[http://www.investinme.org/IIME%20Campaigning-NICE-Clinical-Guidelines.shtml IIME Response to draft guidelines November 2006] *[http://www.investinme.org/Documents/PDFdocuments/Invest%20in%20ME%20-%20CFSME%20Consultation%20Stakeholder%20Comments%20Form%20-%20Official%20IiME%20Response.pdf IIME Stakeholder Submission Response to full Guidelines] *[http://www.investinme.org/Documents/PDFdocuments/IiME%20Official%20Response%20Final%20to%20CG53%20Full%20Guidance.pdf IIME Respone to Final August 2007 NICE Guidelines CG53] ==== [[ME Association]] Submission==== *[http://www.meassociation.org.uk/2007/01/nice-guideline-mea-response/ MEA Submission on draft NICE guidelines] *[http://www.meassociation.org.uk/2007/09/nice-guideline-on-mecfs-mea-statement/ MEA August 2007 Comments] ====[[25 Percent ME Group]] Submission==== *[http://www.25megroup.org/Campaignging/ME%2520TOPICS/NICE/NICE%2520draft%2520Response%25202.10.06.doc 25% ME Group Response to NICE] ====[[Tymes Trust]] Submission==== Tymes Trust [http://www.tymestrust.org/txt/view200611nicesubmission.txt November 2006 Submission] ====[[Action for ME]] Submission==== ====Agreed statement from all ME Charities==== An agreed statement was also put out by all ME Charities.<ref>{{Cite web|url=http://www.25megroup.org/Campaignging/ME%20TOPICS/NICE/Consultation/NICE%20Guidelines%20Agreed%20Statement%20by%20Charities.doc | title = NICE Guidelines Agreed Statement by Charities|website=[[25 Percent ME Group]]|url-status=dead}}</ref> ====Criticism of the York Review by Professor Hooper==== The NICE guidelines were based on the evidence presented by the 2005 [[York Review]], produced by the [[Centre for Reviews and Dissemination]] (CRD). Prof. [[Malcolm Hooper]] submitted written criticism of the York Review to UK Parliament, stating that this supposedly independent review was strongly influenced by the [[Wessely school]]'s [[biopsychosocial model]]. Hooper & Reid published an analysis of the failings in the York Review. Professor Hooper also submitted written evidence to the House of Commons Select Committee on NICE and the CFS/ME guidelines.<ref name="hooperparliament">{{Cite web | title = Select Committee on Health Written Evidence {{!}} Evidence submitted by Professor Malcolm Hooper (NICE 07) | date = 2007 | url=https://publications.parliament.uk/pa/cm200607/cmselect/cmhealth/503/503we79.htm | website = Parliament UK}}</ref> ====MEActionUK Submission and Reports==== [[MEActionUK]] published their ''Concerns and Submission'' about the draft NICE guidelines in October 2006.<ref name="Concerns2006">{{Cite web | date = 2006 | url-status=dead|website=MEActionUK | title = Concerns re: NICE|url=http://www.meactionuk.org.uk/MW/2006/concerns-re-nice.pdf}}</ref> MEActionUK also published comment on the final draft of the August 2007 guidelines.<ref name="comments2007">{{Cite web | date = 2007 | url-status=dead|website=MEActionUK | title = Comments on the NICE guidelines|url=http://www.meactionuk.org.uk/MW/2007/comments-on-nice-guidelines.pdf}}</ref> The failure by NICE to fulfil its remit and the biomedical evidence that NICE ignored in its production is also investigated and reported on.<ref name="GETfacts">{{Cite web | date = 2008|url-status=dead|website=MEActionUK | title = Facts re: GET|url=http://www.meactionuk.org.uk/MW/2008/facts-re-get.pdf}}</ref><ref>{{Cite web | date = 2008|url-status=dead|website=MEActionUK | title = Immunological and Neuroendocrine evidence|url=http://www.meactionuk.org.uk/MW/2008/immunol-and-neuroendo.pdf}}</ref> MEAction UK have published a number of other reports into the criticism of the NICE guidelines on their website. ===NICE Judicial Review Court Case (2009)=== In 2009, two ME patients launched a court case against NICE and against the newly-published NICE guidelines, leading to a judicial review which was not successful.<ref name="IIMER-JR">{{citation | date = Mar 2009|url=https://www.investinme.org/IIME%20Campaigning-NICE-Whats-Next.shtml | title = Post-Judicial Review Comment | last = Invest in ME Research | authorlink = Invest in ME Research}}</ref><ref name="DwME-NICE2021">{{Cite web|url=https://doctorswith.me/nice-2021-a-triumph-of-science-over-discrimination/? | title = NICE 2021: A Triumph of Science over Discrimination Post | last = Doctors with M.E. | authorlink = Doctors with M.E. | date = Nov 1, 2021|quote=2009: Quasi-extrajudicial termination of Judicial Review, leveraging unusually aggressive and tenuous grounds against both plaintiff and their lawyer to ensure process could not proceed}}</ref>
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