MEA statements: Review of NICE guideline CG53 and PACE Trial results [and BACME (British Association of CFS/ME) 2010 Conference Programme]
The British Association of CFS/ME (BACME) appears to have taken over some of the functions of the CFS/ME Clinical and Research Network and Collaborative (CCRNC). There is no website for BACME and very little information available about the role and operation of this organisation.
BACME is chaired by consultant paediatrician, Dr Esther Crawley (lead researcher, Lightning Process pilot study in children). Assistant Chair is Alison Wearden PhD, CPsychol (lead researcher, FINE Trial).
Related information from the News section of the ME Association website (which includes extracts from BACME’s Constitution for which I do not have access to a full copy):
1] ME Association statement: NICE Guideline on ME/CFS – 2010 review process (UK)
2] ME Association statement: PACE Trial results in October (UK)
ME Association statement: NICE Guideline on ME/CFS – 2010 review process (UK)
1 September 2010
Having been led to believe that the proposed review of the 2007 NICE guideline on ME/CFS would be starting in August 2010 The ME Association wrote to NICE to seek clarification in the absence of any official announcement being made during August.
We received the following reply on 24 August:
Thank you for contacting the National Institute for Health and Clinical Excellence (NICE).
The review date which you refer to is the date at which we plan to begin the review process. We are currently beginning to gather evidence and opinions to inform our review proposal. If there has been a large amount of new evidence produced since the original guidance was produced, the review proposal may be to conduct a full review, which can take over a year. On the other hand, if there has not been very much new evidence produced, we may propose to delay the review.
The review proposal will be posted on our website for consultation in the months following the ‘review date’ listed in the guidance. To be notified of additions to web pages relating to your area of interest, including review proposals, you may like to sign up for our web alert system. You can do this via the following page of our website:
I am sorry that I do not have any more definitive information at this stage.
Communications Administrator (Enquiry Handling)
National Institute for Health and Clinical Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom
We also know that members of the original guideline development group have been asked for their opinion as to whether there is sufficient new evidence to justify a review at this time.
The important phrase here is large amount of new evidence produced since the original guidance was produced.
In NICE-speak this means results from randomised controlled trials into any aspect of management that have been published in reputable peer-reviewed medical journals since August 2007. The NICE guideline is primarily concerned with the clinical assessment and management of ME/CFS and does not get involved in coming to conclusions about causation – although NICE obviously has to take note of developments relating to causation, including the findings relating to XMRV and MLVs.
Having managed to fight off a Judicial Review of the ME/CFS guideline, NICE will be feeling confident that its guidance is sound and acceptable to both patients and doctors – a position which many patient support organisations, including the MEA, obviously strongly disagree with. And with very little in the way of new evidence being published in relation to the treatment of ME/CFS, and the fact that results from the PACE trial are fast approaching, it seems likely that NICE may decide to defer this review until later in the year, or even 2011, when they have this information – which could well strengthen their controversial recommendations regarding cognitive behaviour therapy (CBT) and graded exercise therapy (GET).
It should also be noted that NICE will not want to re-open the debate about existing evidence (ie results from clinical trials that were published up to the time of the 2007 guideline) – they want to look at new evidence.
The ME Association will obviously be challenging the current recommendations regarding the use of CBT and GET and to support out case we will be making use of the patient evidence (approx 4,500 respondents) from our 2010 Management Report – the largest ever survey of patient opinion ever carried out in the UK, probably in the world. This report can be accessed on-line here:
We are also consulting with various experts, including those with statistical knowledge, about how best to present our case to the review.
For information purposes the following explanation of how recommendations contained in a NICE guideline should be interpreted by clinicians when making decisions about patient management is worth noting. It clearly contradicts the mistaken view of some doctors that NICE guidelines are almost mandatory and as a result they are no longer able to exercise their clinical judgement where this is may not be entirely consistent with a guideline position.
NICE clinical guidelines are recommendations about the treatment and care of people with specific diseases and conditions in the NHS in England and Wales. Clinical guidelines represent the view of NICE, and are arrived at after careful consideration of the evidence available. Healthcare professionals are expected to take it fully into account when exercising their clinical judgement. However, the guidance does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer, and informed by the summary of product characteristics of any drugs they are considering.
Implementation of this guidance is the responsibility of local commissioners and/or providers. Commissioners and providers are reminded that it is their responsibility to implement the guidance, in their local context, in light of their duties to avoid unlawful discrimination and to have regard to promoting equality of opportunity. Nothing in this guidance should be interpreted in a way that would be inconsistent with compliance with those duties.
With regards to technology appraisal guidance, this type of guidance contains recommendations on the use of new and existing medicines and treatments within the NHS. The NHS is legally obliged to fund and resource medicines and treatments recommended by NICE’s technology appraisals, usually within 3 months of guidance being published.
1 September 2010
Ed: This BACME conference and AGM is being held in Milton Keynes on 13 and 14 October and is faciliated by AYME who have collaborated in CCRNC conferences.
Download PDFs for BACME Provisional Programme and Registration Form here:
2] ME Association statement: PACE Trial results in October (UK)
3 September 2010
It is being reported today in Link magazine (issue 39, September 2010) that:
Data collected for the one year follow up of the PACE trial is currently being analysed in preparation for publication of the findings.
Professor Peter White of St Bartholomew’s Hospital, London will report on the most up-to-date progress and baseline data from the PACE trial to delegates at the British Association of CFS/ME (BACME) October conference.
The release of this PACE trial information may well have an effect on a decision by NICE as to when they commence a review of the 2007 Guideline on ME/CFS.
A statement and more information on the NICE Guideline review can be found in the September news section on the MEA website.
Information supplied by ME Association: http://www.meassociation.org.uk
British Association of CFS/ME (BACME)
Draft Program – please note there may be changes before final program
Milton Keynes 13-14 October
Wednesday 13 October
9.30 -10.30 Registration and coffee
10.30-11.00 Opening Address:
Prof Stephen Holgate MRC (Medical Research Council) Clinical Professor of Immunopharmacology.
“The time has at last arrived to strengthen research into CFS and ME”
11.00 – 12.00 Keynote Speaker: Professor Daniel J. Clauw MD Division of Rheumatology University Michigan
“Advances in Our Understanding of CFS and Overlapping Conditions”
12.00 – 1.30 Lunch Hot and Cold Buffett (preference to be booked)
1.30 -2.15 Dr Alison Wearden Reader in Psychology: FINE Trial
“Pragmatic rehabilitation for Chronic Fatigue Syndrome/ME”
2.15 – 3.00 Judith Harding:
The Role of Diet Management in CFS/ME
3.00 – 3.30 Comfort Break
3.30 – 5.00 Uni – professional Networking Groups.
To be facilitated please contact firstname.lastname@example.org asp if you would like to request a specific group e.g physiotherapists, nurses, paediatricians
5.00 – 6.00 BACME AGM Chairperson: Gill Walsh
(for existing and new members)
7.30 Conference Dinner (to be pre-booked separately)
Thursday 14 October
9.00 Registration & Coffee
9.30 – 10.45 Workshop 1
10.45 – 11.15 Coffee & Comfort Break
11.15 – 12.30 Workshop 2
12.30 – 1.45
Lunch Hot and Cold Buffett (preference to be booked)
1.45 – 2.15 Poster Presentations – Organiser Gabrielle Murphy
Posters will be on display for the whole 2 days
2.15 – 2.45 Coffee & Comfort Break
2.45 – 3.30 Diane Cox & Heather Garry
Video Conferencing for delivery of CFS/ME Interventions at Home (Tele-rehabilitation)
3.30 – 4.30 Professor Peter White
St Bartholomew’s Hospital London
“PACE trial: so near yet so far”
(If outcome results are not yet published, Peter White will present the design, progress and baseline data from the trial)
4.30 – 5pm Closing Address – To be announced
1. Working with the Severely Affected – Leeds Service
2. Mindfullness and ME –The Mindfull Approach to Chronic Illnesses Steve Johnson, Director of the Breathworks Foundation
3. Review of Literature and Clinical Implications on Sleep (please note this is not a workshop) Gabrielle Murphy & Alex Westcombe
4. To Be Announced
5. Research workshop – How to do research successfully when you are a busy clinician – Professor Peter White
6. Group work – Michelle Selby and Helen Chub
Additional information on selected presenters:
Physician working in the Fatigue Service at the Royal Free Hospital and Clinical Lead. She also works in the Department of HIV medicine. Her interests include medically unexplained symptoms MUS). Also involved in local and national organisations promoting access to CFS/ME services and ongoing research.
Coping Better With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Cognitive Behaviour Therapy for CFS/ME
North Bristol NHS Clinical Psychologist
OT lead Dorset CFS Service (formerly “The Wareham Clinic”); Clinical Co-ordinator, Southampton CFS/ME Clinic
Dr Helen Chubb
Senior Registrar, Whitchurch Hospital
Chronic Fatigue Syndrome – personality and attributional style of patients in comparison to healthy controls and depressed individuals: Helen. L. Chubb; Irene Jones; Janice Hillier; Christopher Moyle; Stephanie Sadler; Tanya Cole; Kate Redman; Anne Farmer
DOI: 10.1080/09638239917274 Journal of Mental Health, Volume 8, Issue 4 August 1999 , pages 351 – 359