Note: I have collected these items for reference rather than for discussion, and will add to them as any further news is reported. The thread is locked so the history can be read without interruption from discussion of guideline developments which continues on other threads including this one.
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NICE ME/CFS Guidelines developments 2018 to 2022
As reported in the S4ME News in Brief
News items relating to the development, publication and implementation of the 2021 ME/CFS NICE guideline, as reported in the Science for ME weekly News in brief starting January 2018
News in Brief - January 2018
NICE guideline stakeholder meeting on 16th January at which S4ME will be represented.
Thread here
Letter to NICE: @Graham's letter to NICE has been finalised and will be sent on 16th January. You can add your signature to the letter.
Letter here
NICE Petition Appeal to NICE concerning the Guideline Committee for ME/CFS.
You can sign the petition that supports the letter sent to Sir Andrew Dillon.
Petition here Thread here
NICE guidelines
IiME letter to NICE requesting immediate withdrawal of CBT/GET recommendations from guidelines, and reply.
Letters here Thread here
NICE Stakeholder meeting was held on Tuesday 16th January. Thread includes reports or links to reports of several people who attended.
Thread here
Edit: PDF version here
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News in Brief - February 2018
Reply from NICE to Graham's letter
Reply here Discussion thread here
IiMER update on correspondence with Prof Baker on NICE Guidelines 9th February
IiMER link here Thread here post #336
NICE guidelines - Next steps in guideline development process announced.
NICE announcement here MEA article here Thread here
NICE - Petition to remove CBT/GET from NICE guidelines now.
Petition here Thread here
NICE guidelines: 2005-2007 NICE CFS/ME GUIDELINE DEVELOPMENT GROUP meeting minutes - copies now available.
Thread here
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News in Brief - March 2018
NICE Guideline scoping workshop, Fri 25th May 2018
Thread here Scope for current guideline Thread here
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News in Brief - April 2018
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News in Brief - May 2018
UK NICE stakeholder meeting was held on 25th May. Timetable for future stages and Draft Scoping Report were published ahead of the meeting.
MEA article with timetable Draft Scoping Report Thread here
Trial by Error by David Tuller
''NICE’s Consideration of the Lightning Process''
Includes an e-mail sent to two key members of the NICE guidance executive.
Article here Thread here
MEA ''NICE ME/CFS Clinical Guideline: Summary Report from Scoping Workshop by Dr Charles Shepherd | 30 May 2018''
Detailed report on the scoping meeting held last week. Next step, written feedback from stakeholders. MEA will shortly be consulting its members.
Article here Thread here
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News in Brief - June 2018
UK NICE
The draft scope for the NICE guideline on ME/CFS is now out for consultation, June 2018.
NICE information here Draft scope here Thread here
NICE are now looking for lay members to join the ME/ CFS guideline committee
NICE information here Thread here
Trial By Error by David Tuller
''A Letter to NICE About the IAPT Program''
Article here Thread here
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News in Brief - July 2018
NICE guidelines - Stakeholder submissions to the latest draft scope document have been submitted to NICE, including from S4ME.
Thread here
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News in Brief - August 2018
Note - CDC published its new guideline
Positive Health Online ''What Can We Expect from the Current Review of NICE Guideline CG53'' by Nancy Blake.
Looks at some of the history and the process involved in developing guidelines including the limitations. Takes a pessimistic view of the likely outcome.
Article here Thread here
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News in Brief - September 2018
UK NICE is seeking committee members for the ME/CFS guideline group including GP, physicians, nurse. Closing date 26th September. Some posts, including patient representatives, have already been advertised and interviewed.
Details here Thread here
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News in Brief - October 2018
UK NICE guidelines NICE have published their final scope for their review of the diagnosis and management guidelines for ME/CFS.
Guideline scope PDF here (9 pages) Thread here
Stakeholder comments and developers responses PDF here (354 pages)
List of members appointed so far to the Guideline Committee here Threadhere
UK NICE guidelines committee appointments update
Additional names added to the list of appointments are causing serious concern - see thread discussion.
NICE committee list here Thread here post #106
NICE guideline committee appointments update
All posts have been filled except posts for 2 nurses and a dietitian.
MERUK response here Thread here
IIMER response: ''NICE Guidelines Development - Turning a farce into a shambles'' here
MEA - no formal response yet. Some comments here post #336
AfME response here Thread discussion here post #339
Thread listing and discussing those who applied but were rejected here
UK Parliament A group of MP's led by Carol Monaghan and Nicky Morgan presented a request to the Backbench committee for a parliamentary debate. They highlighted the PACE trial, the imbalance in the newly appointed NICE guideline committee, the harms done by GET and need to remove it, unjustified care orders on children, and the need for proper medical provision.
Video here Thread here
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News in Brief - November 2018
UK NICE Guideline committee for ME/CFS update
Dr William Weir has been appointed to the committee as a full member and Dr Charles Shepherd as a co-opted (non voting) member. Prof. Jonathan Edwards and Greg Crowhurst have been appointed as expert witnesses. Two nurses and a dietitian are still to be appointed.
MEA statement here Thread discussion here
UK - NICE guideline committee
Patient evidence
From the MEA facebook page: There will soon be an important announcement from the Forward ME group of patient charities regarding the collection of patient evidence that will be submitted to NICE.
Thread here
Letter from NICE
A letter has been sent to people who wrote to NICE about guideline committee appointees. The letter includes this statement:
Trial by Error by David Tuller ''Some thoughts about NICE''
Appointments to the UK NICE ME/CFS Guideline review committee have mostly been announced. David's article discusses 'Groupthink in the UK', 'Tough task for GET/CBT proponents' who are or have been involved in clinical trial such as PACE, MAGENTA and FITNET who have allegiance to GET/CBT and to their flawed methodology, and 'The role of “eminence-based” medicine'. He concludes that the necessary robust discussion of ME/CFS treatments rooted in scientific principles is only possible if the committee adds a comparable cohort of biomedical professionals with some knowledge of clinical trials.
Article here Thread here
NICE ME/CFS guidelines committee
Science for ME letter This forum has sent a letter to the chair of the NICE guideline committee (copied to NICE complaints) raising concerns about conflicts of interest for three appointees to the committee. The letter has been made public along with the replies.
Thread with letters here
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____________________
NICE ME/CFS Guidelines developments 2018 to 2022
As reported in the S4ME News in Brief
News items relating to the development, publication and implementation of the 2021 ME/CFS NICE guideline, as reported in the Science for ME weekly News in brief starting January 2018
News in Brief - January 2018
NICE guideline stakeholder meeting on 16th January at which S4ME will be represented.
Thread here
Letter to NICE: @Graham's letter to NICE has been finalised and will be sent on 16th January. You can add your signature to the letter.
Letter here
NICE Petition Appeal to NICE concerning the Guideline Committee for ME/CFS.
You can sign the petition that supports the letter sent to Sir Andrew Dillon.
Petition here Thread here
NICE guidelines
IiME letter to NICE requesting immediate withdrawal of CBT/GET recommendations from guidelines, and reply.
Letters here Thread here
NICE Stakeholder meeting was held on Tuesday 16th January. Thread includes reports or links to reports of several people who attended.
Thread here
Edit: PDF version here
_______________
News in Brief - February 2018
Reply from NICE to Graham's letter
Reply here Discussion thread here
IiMER update on correspondence with Prof Baker on NICE Guidelines 9th February
IiMER link here Thread here post #336
NICE guidelines - Next steps in guideline development process announced.
NICE announcement here MEA article here Thread here
NICE - Petition to remove CBT/GET from NICE guidelines now.
Petition here Thread here
NICE guidelines: 2005-2007 NICE CFS/ME GUIDELINE DEVELOPMENT GROUP meeting minutes - copies now available.
Thread here
________________
News in Brief - March 2018
NICE Guideline scoping workshop, Fri 25th May 2018
Thread here Scope for current guideline Thread here
________________
News in Brief - April 2018
_____________
News in Brief - May 2018
UK NICE stakeholder meeting was held on 25th May. Timetable for future stages and Draft Scoping Report were published ahead of the meeting.
MEA article with timetable Draft Scoping Report Thread here
Trial by Error by David Tuller
''NICE’s Consideration of the Lightning Process''
Includes an e-mail sent to two key members of the NICE guidance executive.
Article here Thread here
MEA ''NICE ME/CFS Clinical Guideline: Summary Report from Scoping Workshop by Dr Charles Shepherd | 30 May 2018''
Detailed report on the scoping meeting held last week. Next step, written feedback from stakeholders. MEA will shortly be consulting its members.
Article here Thread here
_______________
News in Brief - June 2018
UK NICE
The draft scope for the NICE guideline on ME/CFS is now out for consultation, June 2018.
NICE information here Draft scope here Thread here
NICE are now looking for lay members to join the ME/ CFS guideline committee
NICE information here Thread here
Trial By Error by David Tuller
''A Letter to NICE About the IAPT Program''
Article here Thread here
_________________
News in Brief - July 2018
NICE guidelines - Stakeholder submissions to the latest draft scope document have been submitted to NICE, including from S4ME.
Thread here
_____________-
News in Brief - August 2018
Note - CDC published its new guideline
Positive Health Online ''What Can We Expect from the Current Review of NICE Guideline CG53'' by Nancy Blake.
Looks at some of the history and the process involved in developing guidelines including the limitations. Takes a pessimistic view of the likely outcome.
Article here Thread here
_______________
News in Brief - September 2018
UK NICE is seeking committee members for the ME/CFS guideline group including GP, physicians, nurse. Closing date 26th September. Some posts, including patient representatives, have already been advertised and interviewed.
Details here Thread here
________________
News in Brief - October 2018
UK NICE guidelines NICE have published their final scope for their review of the diagnosis and management guidelines for ME/CFS.
Guideline scope PDF here (9 pages) Thread here
Stakeholder comments and developers responses PDF here (354 pages)
List of members appointed so far to the Guideline Committee here Threadhere
UK NICE guidelines committee appointments update
Additional names added to the list of appointments are causing serious concern - see thread discussion.
NICE committee list here Thread here post #106
NICE guideline committee appointments update
All posts have been filled except posts for 2 nurses and a dietitian.
MERUK response here Thread here
IIMER response: ''NICE Guidelines Development - Turning a farce into a shambles'' here
MEA - no formal response yet. Some comments here post #336
AfME response here Thread discussion here post #339
Thread listing and discussing those who applied but were rejected here
UK Parliament A group of MP's led by Carol Monaghan and Nicky Morgan presented a request to the Backbench committee for a parliamentary debate. They highlighted the PACE trial, the imbalance in the newly appointed NICE guideline committee, the harms done by GET and need to remove it, unjustified care orders on children, and the need for proper medical provision.
Video here Thread here
______________
News in Brief - November 2018
UK NICE Guideline committee for ME/CFS update
Dr William Weir has been appointed to the committee as a full member and Dr Charles Shepherd as a co-opted (non voting) member. Prof. Jonathan Edwards and Greg Crowhurst have been appointed as expert witnesses. Two nurses and a dietitian are still to be appointed.
MEA statement here Thread discussion here
UK - NICE guideline committee
Patient evidence
From the MEA facebook page: There will soon be an important announcement from the Forward ME group of patient charities regarding the collection of patient evidence that will be submitted to NICE.
Thread here
Letter from NICE
A letter has been sent to people who wrote to NICE about guideline committee appointees. The letter includes this statement:
Thread with copy of letter hereBecause of the concerns you and others have expressed, we have reviewed the appointments made so far and we consider that they are appropriate and that the interests the members have declared can be managed using our conflicts of interest policy. We will ensure that the small number of final appointments yet to be made retain the balance referred to earlier.
Trial by Error by David Tuller ''Some thoughts about NICE''
Appointments to the UK NICE ME/CFS Guideline review committee have mostly been announced. David's article discusses 'Groupthink in the UK', 'Tough task for GET/CBT proponents' who are or have been involved in clinical trial such as PACE, MAGENTA and FITNET who have allegiance to GET/CBT and to their flawed methodology, and 'The role of “eminence-based” medicine'. He concludes that the necessary robust discussion of ME/CFS treatments rooted in scientific principles is only possible if the committee adds a comparable cohort of biomedical professionals with some knowledge of clinical trials.
Article here Thread here
NICE ME/CFS guidelines committee
Science for ME letter This forum has sent a letter to the chair of the NICE guideline committee (copied to NICE complaints) raising concerns about conflicts of interest for three appointees to the committee. The letter has been made public along with the replies.
Thread with letters here
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