Have you received or been offered Cognitive Behavioural Therapy (CBT) and/or Graded Exercise Therapy (GET) in the UK since 2007?

The Forward ME group of charities has launched a survey, having been asked by the National Institute of Health and Care Excellence (NICE) to gather evidence and experiences.

ME Research UK (MERUK) CEO, Simon Phillips, welcomed the launch of the survey, adding:
As one of the funders of the CBT and GET Patient Survey and as an active member of the Forward-ME Group, ME Research UK encourages all those who have undertaken or were offered CBT or GET in the UK since 2007 to take this opportunity to contribute before the end of January 2019. This will allow Forward-ME to submit the results to NICE for them to use as part of their review of the current Guideline. We will await the results of Oxford Brookes University’s analysis of the results with keen interest.

The ME Association (MEA) explain the deadline:
The deadline for completing the questionnaire is the 31st January 2019, to meet the very narrow time frame set out by NICE. 
Unfortunately, this also means that Forward ME do not have the time or capacity to send out/accept paper copies. We will make it very clear to NICE when we submit the report that those unable to complete the survey online, including many severely affected people, have not been able to take part.
The survey is however designed to allow a carer, parent or another person to fill it in on behalf of someone else if they are unable to do this themselves.

Join in discussions on social media groups.

Information from the Worcestershire NHS CFS/ME Local Multi-Disciplinary Team (LMDT): Nice guidelines (2007) suggest that the most effective treatments are Cognitive Behavioural Therapy (CBT) to help improve the way you feel about the condition, and Graded Exercise Therapy (GET) to gradually build up exercise tolerance and improve fatigue levels. The principles of these therapies underpin the treatment provided by the Worcestershire CFS/ME Service.

Please sign and forward petition:  “Stop harming ME/CFS patients - take CBT/GET out of NICE guidelines NOW”. 
Expected Publication date by NICE: 14 October 2020.
NICE has promised to review its current guidelines on ME/CFS, which is not scheduled to be completed until October 2020.  Meanwhile it has left the current guidelines in place, despite the recommendations for treatments that are known to be harmful.  

ME/CFS NICE Guideline updates from ME Association (MEA), Action for ME (AfME), Forward ME, and ME Research UK (MERUK).

MEA:  NICE ME/CFS Guideline Review: Publication of revised Scope, comments, and committee appointments | 16 October 2018.

AfME:  NICE publishes final scope for M.E./CFS guideline.
October 16, 2018.  The National Institute for Health and Care Excellence (NICE) has published its final scope for its updated guideline on M.E./CFS, along with consultation comments and committee appointments.

MEA:  Forward ME – Stakeholder deliberations over NICE Scope for ME/CFS | 22 October 2018.

AfME:  NICE guideline scope and committee: update & comment.
October 25, 2018.  
 
MERUK:  NICE ME/CFS Guideline Committee - ME Research UK’s Comment.
Posted on 29 Oct 2018.
ME Research UK joined other charities and those affected by ME/CFS in welcoming the long-awaited review of the NICE Guideline on ME/CFS.  Given the concerns expressed by many about the scope and content of the current Guideline, this review is vitally important and ME Research UK, as a stakeholder, has submitted its views to NICE during its consultation period.
We agree that it is important to listen and understand the views of a range of experts in order to ensure that the revised Guideline provides clarity for everyone who is affected by it - patients and clinicians - but the Guideline must be based on the best available research and the replacement Guideline written with objectivity.
ME Research UK wishes to express its disappointment with the current appointment of a comparatively small number of members of the ME/CFS Guideline Committee who have expertise on the biomedical basis of ME/CFS when compared to those whose background appears to favour the bio psychosocial model. Given the increasing evidence of a biomedical origin of the illness and the current uncertainty, for example, of the soundness of the PACE trial, this is to be regretted. 
We look forward to following the progress of the committee with interest and we hope that the views of those with biomedical expertise are heard and that the revised Guidelines will improve the situation for the many, many thousands of people affected by this illness.

ME Association Statement re: NICE ME/CFS Guideline Review and Committee Appointments | 09 November 2018. 
by Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
The ME Association has always been very clear on the position we take on the current (2007) NICE clinical guideline.
We believe that many of the key recommendations are unfit for purpose - especially those regarding the use of CBT and GET for everyone with mild or moderate ME/CFS.
We have played a key role in persuading NICE that a new guideline is required. The new guideline must recognise that ME/CFS is a serious multisystem disease and not a psychological illness.

PACE trial and its effect on people with ME - debated by MPs in Westminster Hall on 20 February.
Video (11.00 - 11.30 am), and official Hansard transcript from the PACE Trial debate now available.
 
Action for ME gave a summary, and the ME Association a detailed report.

Carol Monaghan: SNP MP leads debate on ‘one of the biggest medical scandals of the 21st century’.

Discussion on Science for ME website.

NICE news article - NICE announces next steps in updating its guideline on ME/CFS.

A workshop last month with stakeholders marked the formal start of NICE’s collaborative work to update its 2010 guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
 
NICE Guideline - ME/CFS : Diagnosis and Management
A New Guideline is in development, with expected publication date: 14 October 2020.  This Guideline will fully update (CG53)

 
Forward-ME members discussed the NICE Guideline when they met on 10 January, a week before the NICE Guideline Stakeholder Engagement workshop.   Forward-ME is a collaboration of ME/CFS charities - chaired by the Countess of Mar.

 
Reports following the workshop:

• Dr Charles Shepherd, the ME Association’s Medical Adviser summarised the key points;  and the MEA announced the NICE News item - 
• Sue Waddle, Vice Chair of ME Research UK (MERUK) attended the workshop and gave her comments in the MERUK NICE Guideline Report
• Action for M.E.’s report on their involvement at the NICE guideline meeting, and further report -

 
 
Information from the Worcestershire NHS CFS/ME Service website:
Worcestershire Health & Care NHS Trust Extract from ‘Family & Friends Area’ -
Treatments for CFS/ME
Nice guidelines (2007) suggest that the most effective treatments are Cognitive Behavioural Therapy (CBT) to help improve the way you feel about the condition, and Graded Exercise Therapy (GET) to gradually build up exercise tolerance and improve fatigue levels. The principles of these therapies underpin the treatment provided by the Worcestershire CFS/ME Service.

The National Institute for Health and Care Excellence (NICE) announced on 20th September 2017 that it is planning a full update of its guideline on the diagnosis and management of CFS/ME.

• ME Association: Breaking News: NICE decides to Fully Update its guideline on ME/CFS!
• Action for M.E.: NICE guidelines on CFS/M.E. to be reviewed
• ME Research UK: NICE CFS/ME guideline to be updated
  
• NICE announcement
  
• NICE Guideline: Clinical guideline [CG53]
  
• The Times: Mutiny by ME sufferers forces a climbdown on exercise treatment | 25 September 2017

15,180 people signed the ME Association (MEA) national petition, addressed to Sir Andrew Dillon, Chief Executive, NICE, calling for a complete review of the NICE guideline for ME/CFS.  This included many Worcestershire people who signed, many of whom gave their comments.
The 2007 NICE Clinical Guideline has been checked by NICE for the need for an update and the NICE CFS/ME Guideline Registered Stakeholders were invited to comment on NICE’s surveillance consultation - they were given 14 days, from 10 - 24 July to voice their concerns.

LocalME (an online forum for local ME group contacts across the UK) responded - they had managed to receive an extension until 31 July.  The MEA announced Stakeholder submissions from Action for ME (AfME), Forward-ME, Invest in ME Research, LocalME, the MEA, Tymes Trust, and many more.
 
National Petition -
ME Association petition represents biggest expression of no confidence in a NICE guideline ever recorded | 26 July 2017
www.meassociation.org.uk/2017/07/me-association-petition-represents-biggest-expression-of-no-confidence-in-a-nice-guideline-ever-recorded-26-july-2017/
 
Comments - 
www.meassociation.org.uk/wp-content/uploads/MEA-Petition-Comments-24.07.17-1.pdf
 
NICE surveillance consultation -
www.nice.org.uk/guidance/CG53/documents/surveillance-review-proposal
 
Stakeholder submissions -
www.meassociation.org.uk/2017/07/the-nice-guideline-consultation-uk-stakeholder-submissions-27-july-2017/
 
LocalME -
see attached file below

This is your opportunity to voice your concerns. 

The ME Association has today [10 July] launched a national petition that aims to demonstrate to NICE (National Institute for Health and Care Excellence) that people with CFS/ME are not happy with the current guideline or the way in which the current review is being conducted.
Action for ME are also directing people to the MEA national petition.

Please sign the petition, add your comments if you are able to, and share/forward this blog.

• ME Association Petition: The NICE guideline for CFS/ME is not fit for purpose… | 10 July 2017
• Action for M.E. to NICE: guideline must be reviewed 10 July 10 2017
  

Revision of NICE Guideline on ME/CFS – latest state of play | 21 January 2013

www.meassociation.org.uk/?p=14183

by Tony Britton on January 21, 2013

At the beginning of January, The ME Association wrote to NICE (National Institute for Clinical Excellence) to ask for clarification on what was happening regarding the expected 2013 review of the NICE guideline on ME/CFS.

The following reply was received this morning:

Dear Dr. Shepherd,

NICE’s Senior Management Team, with the approval of the NICE Board, has currently suspended the routine review of the need to update clinical guidelines 3 years after their publication. This suspension is from January 2013. A new process for reviewing and updating guidelines is being developed and we will be considering the timing and process of reviews and developing a process for faster more responsive updates of our guidelines. Our aim is to enable us to consider new evidence more frequently and to update aspects of guidelines more rapidly. A new process for both reviews and updates is being developed which we will be rolling out during 2013/14.

A comprehensive review is also being undertaken of our entire portfolio and all guidelines will migrate onto the new timings for more frequent reviews during 2013/14. Once we have firmer detail about the new timings for reviews and updates we will notify stakeholders of the new review dates.

Please let me know if you have any further questions.

Best wishes,

Oliver Bailey

Project Manager – Centre for Clinical Practice

National Institute for Health and Clinical Excellence

10 Spring Gardens | London SW1A 2BU | Web: http://nice.org.uk

The MEA is currently in the process of preparing all the data from their 2012 patient evidence survey on CBT, GET and Pacing into a report. We were intending to send this report to NICE as part of new patient evidence that would need to be considered in the ME/CFS guideline review process.

Consequently, Dr Shepherd has written back to NICE today to check on whether we must proceed on the basis that there is now some uncertainty as to whether the ME/CFS guideline will be reviewed in 2013

And with no real information as to how the new NICE guideline review process will operate in future it is impossible to assess what role stakeholders such as the ME/CFS charities will have in a review process that will clearly be much faster, and possibly more frequent, than the process it is replacing.

Our parliamentary colleagues on the All Party Parliamentary Group on ME have been informed about this development.

--- In LocalME@yahoogroups.com, "renethorpe" <renethorpe@...> wrote:

Permission to Repost

http://www.meaction uk.org.uk/ Dangers_of_ NICE_for_ MECFS.htm

More potential dangers of the UK NICE Guideline on "CFS/ME" for
people with ME/CFS?

Margaret Williams 2nd January 2008

Much has been written about the NICE Guideline on "CFS/ME" since its
release on 22nd August 2007, mostly noting concern over the
Guideline's recommendations that cognitive behavioural therapy and
graded exercise therapy (CBT/GET) should the first-line (and only)
management for "Chronic Fatigue Syndrome / Myalgic
Encephalomyelitis"
or "CFS/ME". This concern is unsurprising, given the existence of
numerous published papers which all conclude that CBT is of limited
and non-lasting benefit, and given that at least four major surveys
of over 3,200 patients with ME/CFS have clearly shown GET to be
actively harmful.