NICE has “paused” the release of the revised Guideline on ME/CFS

With less than 24 hours to go before it was due for release on the 18th August 2021, NICE suddenly and without prior warning announced that it had “paused” the release of the revised Guideline, leaving organisations, families, and individuals in the ‘ME world’ shocked, stunned and disappointed. The statement from NICE can be read by clicking here.

Reactions to the news include the following –

Invest in ME Research – “Statement from Invest in ME Research”

https://www.investinme.org/IIMER-Statement-20210817-1.shtml

Forward ME – “ME charities ‘baffled by last-minute delay’ to NICE Guideline”

https://meassociation.org.uk/2021/08/m-e-charities-baffled-by-last-minute-delay-to-nice-guideline-forward-me-announcement/

Doctors with ME – “Rapid Response and Expert Comment: NICE Guideline Delay and Accommodation of Unlawfulness”

https://doctorswith.me/rapid-response-and-expert-comment-nice-guideline-delay-and-accommodation-of-unlawfulness/

ME Research UK – “NICE Guideline – 11th hour delay”

https://www.meresearch.org.uk/nice-guideline-11th-hour-delay/

Dr Charles Shepherd – “The NICE Guideline ME/CFS: Personal Observations Dr Charles Shepherd”

https://meassociation.org.uk/2021/08/the-nice-guideline-me-cfs-personal-observations-dr-charles-shepherd/

Carol Monaghan MP – “Carol Monaghan hits out over delay to guidance for ME diagnosis and management”

https://www.thenational.scot/news/19521324.carol-monaghan-hits-delay-guidance-diagnosis-management/

The Grace Charity for ME – “Letter for NICE, August 2021”

https://www.thegracecharityforme.org/wp-content/uploads/2021/09/letter-for-NICE-2021.pdf

Prof Ron Davis – “Ron Davis issues a statement on the NICE guidelines”

https://www.omf.ngo/ron-davis-issues-a-statement-on-the-nice-guidelines/

Invest in ME Research – “Letter to NICE Management from Invest in ME Research”

https://www.investinme.org/Letter-to-NICE-Aug2021.shtml

Valerie Eliot Smith – “NICE – contemptuous and contemptible: the case for community publication of the “paused” guideline for “ME/CFS”

https://valerieeliotsmith.com/2021/08/20/nice-contemptuous-and-contemptible-the-case-for-community-publication-of-the-paused-guideline-for-me-cfs/

David Tuller, DrPH – “Trial By Error: NICE Squares Off Against Royal College Bullies Over New ME/CFS Guidelines”

https://www.virology.ws/2021/08/19/trial-by-error-nice-squares-off-against-royal-college-bullies-over-new-me-cfs-guidelines/

Prof Brian Hughes – “NICEXIT: Royal Colleges look to “take back control” of treatment standards”

https://thesciencebit.net/2021/08/22/nicexit-royal-colleges-look-to-take-back-control-of-treatment-standards/

Peter Kemp – “Complaint from NICE stakeholders VIRAS to NICE”

https://m.facebook.com/story.php?story_fbid=1198685983905114&id=190555174718205&__tn__=-R

Invest in ME Research – “FOURTEEN YEARS – Review Statement from Invest in ME Research – NICE Updated Guideline on the Diagnosis and Management of Myalgic Encephalomyelitis (ME or ME/CFS)”

https://www.investinme.org/nice2021-review-statement-aug.shtml

Valerie Eliot Smith – “Update on the “paused” NICE guideline for “ME/CFS”: the case for individual/community publication.”

https://valerieeliotsmith.com/2021/08/25/update-on-the-paused-nice-guideline-for-me-cfs-the-case-for-individual-community-publication/

The TYMES Trust – “TYMES Trust statement – The “pausing” of the new NICE Guidelines”

https://www.facebook.com/tymestrust/photos/a.1574915302793606/3118361858448935/?type=3&theater

Valerie Eliot Smith – “A debt of gratitude”

https://valerieeliotsmith.com/2021/08/26/a-debt-of-gratitude/

Tom Chivers – “What we’re not being told about ME – NICE won’t admit its treatment of the chronic disease doesn’t work”

https://unherd.com/2021/08/what-were-not-being-told-about-me/

Margaret Williams – “Wilful Ignorance?” (plus Addendum)

https://www.margaretwilliams.me/2021/wilful-ignorance.pdf

Angela Tilby, Church Times – “Doctor does not always know best”

https://www.churchtimes.co.uk/articles/2021/27-august/comment/columnists/angela-tilby-doctor-does-not-always-know-best

Valerie Eliot Smith – “Legal opinion and legal advice: the “paused” NICE guideline for “ME/CFS”

https://valerieeliotsmith.com/2021/09/01/legal-opinion-and-legal-advice-the-paused-nice-guideline-for-me-cfs/

David Tuller, DrPH plus many scientists and doctors – “A Letter Urging NICE to Publish ME/CFS Guideline Without Delay”

https://www.virology.ws/2021/09/01/trial-by-error-a-letter-urging-nice-to-publish-me-cfs-guideline-without-delay/

Dr Sarah Myhill – “Call for NICE to WITHDRAW its CURRENT ME/CFS GUIDELINE – CG53”

https://www.change.org/p/the-national-institute-for-health-and-care-excellence-nice-call-for-nice-to-withdraw-its-current-me-cfs-guideline-cg53?redirect=false

Invest in ME Research – “NICE and Transparency”

https://www.investinme.org/Letter-to-NICE-Sep2021.shtml

Invest in ME Research – “NICE Guidelines Development 2021 – A Time to Step Back?”

https://www.investinme.org/IIMER-Statement-20210901.shtml

Valerie Eliot Smith – “Abuse of process & abuse of power: a NICE publication (with file download)”

https://valerieeliotsmith.com/2021/09/13/abuse-of-process-abuse-of-power-a-nice-publication-with-file-download/

The Canary – “The leak of NICE’s finalised ME guidelines exposes the ‘psych lobby’ scandal”

https://www.thecanary.co/uk/analysis/2021/09/14/the-leak-of-nices-finalised-me-guidelines-exposes-the-psych-lobby-scandal/

David Tuller, DrPH plus many scientists and doctors – “Trial By Error: An Updated Letter to the NICE Chief Executive About the Unpublished ME/CFS Guideline”

https://www.virology.ws/2021/09/15/trial-by-error-an-updated-letter-to-the-nice-chief-executive-about-the-unpublished-me-cfs-guideline/

Invest in ME Research – “Guidelines by Stealth”

https://www.investinme.org/IIMER-Newslet-2109-05-nice.shtml

George Winter – Evidence-based medicine is not about consensus

https://www.medicalindependent.ie/evidence-based-medicine-is-not-about-consensus/

Valerie Eliot Smith – “What’s wrong with the NICE process + what can be done about it?”

https://valerieeliotsmith.com/2021/09/24/whats-wrong-with-the-nice-process-what-can-be-done-about-it/

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