NICE stakeholder workshop reports

NICE CG53 Stakeholder engagement meeting

This week NICE held an introductory stakeholder meeting in London. There were limited places at the meeting and WAMES’ request to join the meeting by video conference was not successful. Future meetings will require a trip to London.

NICE stakeholder meeting for CG53 16th January 2018: Impressions from the meeting by Sally Burch

The meeting started with some explanations of the process of review. It was explained that, in a break from the traditional process, this engagement meeting was being held before any scoping document was produced. There were 60 or so people in attendance and overall the meeting had a positive feel to it.

We were welcomed to the meeting by Philip Alderson, the Clinical Advisor for NICE. Then Mark Baker, the Centre for Guidelines Director at NICE, explained about the guideline update. One thing he said struck me as very important. He said, “We are going to tear it up and start again. We won’t allow it to look the same.” I found this reassuring. Indeed, he reiterated several times that the guideline was to be replaced in full. He also said that a re-naming of the guideline would be possible…

Victoria Thomas, the Head of the Public Involvement Programme for NICE, told us that in this update they would be “starting with the perspective of the patient”. She explained that there would be four patient members on the guideline development committee, and that individual patients (or carers) could apply as themselves, ie they do not need to be attached to a stakeholder group to be on the committee. Read more

MEA blog post: Reviewing the NICE guideline for ME/CFS: The Stakeholders Engagement Workshop – A Report by Dr Charles Shepherd, 17 January 2018

… Among the doctor’s present were Dr Abhijit Chaudhuri, Professor Jonathan Edwards, Dr Luis Nacul (from the ME Biobank); Dr Paul Worthley (ME Trust), Professor Michael Sharpe and Dr William Weir.

The Countess of Mar was also present to represent the Forward ME group of charities.

NICE presentations:

Stakeholders were placed into small groups on a table and the meeting was split into two sections. The first section involved a series of short presentations from senior people at NICE who are going to be playing a key role in the development of this guideline.

Dr Philip Alderson, Clinical Adviser at NICE, welcomed everyone.

Professor Mark Baker, Centre for Guidelines Director, spoke about how NICE had now accepted that the current guideline was no longer meeting the needs of people with ME/CFS and that they needed to prepare a completely new guideline.

Dr Nora O’Flynn, Chief Operating Officer at the National Guideline Centre, explained how the work on this guideline would be based at the Royal College of Physicians and the way in which it would be prepared. This presentation contained some important practical information on the timeline:

  • Scope Stakeholder Workshop on May 25th
  • Scope consultation from 21st June to 19th July
  • Advertising for guideline committee members from 21st June to 19th July
  • First guideline committee meetings will start at the end of November 2018
  • Guideline development process will take about 70 weeks [c. April 2020]

The development process will involve:

  • Discussion and preparation of the Scope of the guideline – i.e. what it is going to cover and not cover
  • Dealing with important clinical questions
  • Reviewing of the protocols
  • Obtaining evidence reports covering clinical and economic evidence. The systematic review of published evidence will be carried out internally at NICE this time

And on the membership of the guideline committee:

  • This will be multidisciplinary as far as health professionals are concerned with 10 to 12 members
  • Up to 4 lay members – patients and carers who will be expected to make a significant input
  • The position of Chair of the Guideline Committee is currently being advertised and interviews will take place in February. Read more

ME Research UK blog post: NICE Guideline Review – Stakeholder Workshop Jan 2018

… “This meeting was extremely encouraging. Professor Mark Baker (Director of the Centre for Guideline at NICE) is determined to ‘do the right thing’ – and he does listen. So, I am hopeful that the outcome will be more favourable in the upcoming guideline than the present version. I also think that I have got through to him over the last year on the principle of “First, do no harm” in regard to Graded Exercise Therapy [GET] and that they may take the unusual step of issuing an Interim Advisory Note before the next version of the guideline is published.

The Core Principles for developing all NICE Guidance cover:

  • the establishment of Independent Advisory Committees;
  • the establishment of a Comprehensive Evidence Base;

and all:

  • receive Expert Input;
  • have Public Involvement;
  • include Genuine Consultation;
  • are subject to Regular Review;
  • operate under an open and transparent process; and,
  • consider Social Values and Equity.   Read more
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Dr Myhill’s complaint to the GMC about PACE

Dr Myhill has complained to the GMC about the PACE authors

Dr Sarah MyhillThe GMC is the UK doctor’s regulatory authority – the General Medical Council. Patient support is sought from all patients who feel they have been harmed by PACE. You do not have to be a UK citizen.

PACE is the study ‘Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. (2011)’, published in The Lancet.

SEVEN other medical doctors are supporting this complaint but wish to remain anonymous – they are concerned about the impact of such “whistle-blowing” on their future careers within and without the NHS.

Read the letter of complaint.

The complaint is one of Fraud, namely:

  • fraud by false representation
  • fraud by failing to disclose information
  • fraud by abuse of position

There are also numerous breaches of:

  • GMC Guidance on Good Medical Practice
  • GMC Guidance on Good Practice in Research
  • GMC Guidance on Consent to Research

Dr Myhill is asking for your help.

Please read the letter of complaint and also the ‘PACE patient support letter’.

Dr Myhill requests your help:

Dr Myhill wants people who have been harmed by PACE to write in support of this complaint. You could have been harmed in any of these ways and possibly others too:

  • suffered damage (including physical, mental or emotional distress) as a result of CBT
  • suffered damage (including physical mental or emotional distress) as a result of GET
  • been denied disability benefits because the physical nature of your disease has not been properly recognised and/or you have been told you have a psychological condition.
  • have been denied industrial compensation for your disease because the physical nature of your disease has not been properly recognised and/or you have been told you have a psychological condition.
  • have been denied referral or funding for referral to a physician specialising in the biomedical approach to treating CFS/ME. You do NOT have to have been diagnosed or have fallen ill with CFS/ME after PACE was published [March 2011] to support this complaint. So, for example if you were diagnosed/fell ill in 1980, but have recently been refused benefits as a result of PACE [for example, for not engaging in CBT or because your illness was considered psychological) or maybe you have suffered mental distress as a result of PACE (for example, benefit applications were more stressful because your illness was considered psychological) then you CAN support this complaint. It will help our case to have as many support letters as possible.If you feel you have even the smallest ‘case’ for inclusion then please do submit a letter of support – it is incumbent on the GMC to prove that you have not been so affected, not for you to prove that you have!

Please do email if you are in doubt or need help phrasing why you have been harmed by PACE. Please be patient – we will respond as quickly as possible.

Just put your reasons for supporting this complaint in the relevant section in the template letter ‘PACE patient support letter’ and fill in any other portions that need filling in and

Send to:

  • email it to – Sir Terence Stephenson is the
    Chair of the GMC
  • if you can, please send your letter by post too:
    Sir Terence Stephenson
    General Medical Council
    Fitness to Practise Directorate
    3 Hardman Street
    Manchester, M3 3AW
  • if you feel comfortable with doing so, please can you copy your letter
    of support to Dr Myhill at

More information: My Complaint to the GMC about the PACE authors

See also: Medical Abuse In ME Sufferers – a campaign to get a Public Inquiry into the abuse of ME sufferers

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Working carers’ survey 2017-18: give your views

Carers Wales Campaign 2017/18: Working Carers Survey

As the working population ages and our loved ones are living longer, supporting carers who work is becoming increasingly important. More and more of us will be juggling caring responsibilities at home alongside work.

Employers of all sizes will want to do more for carers in their workforce and Carers Wales wants to know your thoughts on how your employers could make your lives better by adopting certain working practices. We would like your views if:

  • you are a working carer
  • you have been a working carer
  • you think you may be a working carer in the future
  • you have views you would like to share

Carers Wales will use the findings for a report which will be shared across Wales to inform employers and the Welsh Government about how working carers can be supported.

If you have a view, please fill in the survey.


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Elevated brain natriuretic peptide levels in CFS associate with cardiac dysfunction

Research abstract:

Elevated brain natriuretic peptide levels in chronic fatigue syndrome associate with cardiac dysfunction: a case control study Cara Tomas, Andreas Finkelmeyer, Tim Hodgson, Laura MacLachlan, Guy A MacGowan, Andrew M Blamire, Julia L Newton in BMJ Openheart 4:2 2017

Key questions
What is already known about this subject?

  • Structural and functional cardiac abnormalities have been reported in chronic fatigue syndrome (CFS).
  • Magnetic resonance spectroscopy studies have suggested a subclinical cardiomyopathy in some of those with CFS.

What does this study add?

  • Brain natriuretic peptide (BNP) levels were significantly higher in CFS compared with matched controls.
  • There were significantly lower cardiac volumes in those with higher BNP levels in both end-systolic and end-diastolic volumes.
  • There were no relationships between fatigue severity, length of illness and BNP levels confirming that our findings are unlikely to be related to deconditioning.

How might this impact on clinical practice?

  • This study confirms an association between reduced cardiac volumes and BNP in CFS.
  • Lack of relationship between length of disease suggests that findings are not secondary to deconditioning.
  • Further studies are needed to explore the utility of BNP to act as a stratification paradigm in CFS that directs targeted treatments.


To explore levels of the brain natriuretic peptide (BNP) and how these associate with the cardiac abnormalities recently identified in chronic fatigue syndrome (CFS).


Cardiac magnetic resonance examinations were performed using 3T Philips Intera Achieva scanner (Best, Netherlands) in CFS (Fukuda) participants and sedentary controls matched group wise for age and sex. BNP was also measured by using an enzyme immunoassay in plasma from 42 patients with CFS and 10 controls.


BNP levels were significantly higher in the CFS cohort compared with the matched controls (P=0.013). When we compared cardiac volumes (end-diastolic and end-systolic) between those with high BNP levels (BNP>400 pg/mL) and low BNP (<400 pg/mL), there were significantly lower cardiac volumes in those with the higher BNP levels in both end-systolic and end-diastolic volumes (P=0.05). There were no relationships between fatigue severity, length of disease and BNP levels (P=0.2) suggesting that our findings are unlikely to be related to deconditioning.


This study confirms an association between reduced cardiac volumes and BNP in CFS. Lack of relationship between length of disease suggests that findings are not secondary to deconditioning. Further studies are needed to explore the utility of BNP to act as a stratification paradigm in CFS that directs targeted treatments.

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Autonomic Nervous System functioning related to nocturnal sleep in patients with CFS

Research abstract:

Autonomic nervous system functioning related to nocturnal sleep in patients with Chronic Fatigue Syndrome compared to tired controls, by Source: M Orjatsalo, A Alakuijala, M Partinen in J Clin Sleep Med. 2017 Dec 13. pii: jc-17-00330. [Epub ahead of print]

STUDY OBJECTIVES: Autonomic nervous system (ANS) dysfunction is common in chronic fatigue syndrome (CFS). One of the main complaints in CFS is unrefreshing sleep. We aimed to study the nocturnal cardiac ANS in different sleep stages in patients filling the 2015 Institute of Medicine CFS diagnostic criteria.

METHODS: In this case series study, the nocturnal heart rate variability and blood pressure (BP) variables in polysomnography were studied in groups of patients with CFS (n = 8) and tired controls (n = 8) aged 16-49 years. Five of the patients with CFS and controls were female. The heart rate variability and BP parameters and heart rate were studied in all sleep stages and wake.

RESULTS: The amount of low-frequency oscillations of the electrocardiography R-R-intervals spectra (LF; predominantly reflects sympathetic activity) was higher for patients with CFS in all sleep stages compared to controls (P< .001). During wake, the amount of LF was lower for the patients with CFS (P< .05). The amount of high-frequency oscillations (HF; reflects parasympathetic activity) was lower in stage N3 sleep in the patients with CFS than for the controls (P< .0001), but, in total, HF was higher in patients with CFS (P< .001). Patients with CFS had higher overall nocturnal systolic and mean BP (P< .0001) and lower heart rate (P< .0001) than controls. No significant differences were found in sleep stage distributions.

CONCLUSIONS: The results suggest a nocturnal dysfunction of the cardiac ANS in CFS, presenting as lower parasympathetic tone in deep sleep and higher sympathetic tone asleep.

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Energy efficiency nursing: managing the effects of ME/CFS: webinar 30 Jan 2018

Webinar sponsored by Action for ME

Tuesday 30 January 2018 @ 8pm

Energy efficiency nursing: managing the effects of M.E./C.F.S

This is a CPD Webinar for Healthcare Professionals and will be most useful to nurses working within primary care. It will also be of particular interest to GPs and health professionals from neurology, pain management, physiotherapy, occupational health, clinical psychology, gastroenterology, infectious diseases, rheumatology and dietetics who will be treating patients with M.E./C.F.S.

Keith Anderson, an M.E./CFS Clinical Nurse Specialist with NHS Fife. will provide an insight into the challenges for anyone working within this speciality, and will demonstrate how he has applied his nursing and clinical management skills to treat and support patients with M.E./CFS.

Learning Outcomes

  1. Improved knowledge on classification and definitions of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS)
  2. An understanding of the symptoms and effects of ME/CFS
  3. Recognition of the management challenges facing people affected by the ME/CFS condition
  4. Better awareness of the different models of care and self-management
  5. Where to find accurate additional information and guidance on the ME/CFS condition.

About the Speaker
Keith Anderson is a M.E./C.F.S. Clinical Nurse Specialist with NHS Fife. He has 29 years of nursing experience, and has specialised in M.E./C.F.S. for over 13 years. Keith supports HP’s to enhance their knowledge and treatment of the condition by facilitating CPD opportunities, speaking at events and volunteering with Action for M.E. He is a member of the Scottish Collaborative on M.E, whose current ambition includes establishing a managed clinical network for M.E./CFS.

Kingdom FM blog post, 26 July 2017: Only M.E. nurse in Fife calls for better recognition of condition


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Measuring school functioning in students with CFS

Review abstract:

Measuring school functioning in students with Chronic Fatigue Syndrome: a systematic review, by Michelle Tollit, Jennifer Politis, Sarah Knight in J Sch Health. 2018 Jan; 88(1):74-89. [published online 17 Dec 2017]

BACKGROUND: It is often surmised that school functioning is significantly impacted in chronic fatigue syndrome (CFS); however, how this phenomenon manifests itself has rarely been characterized.

METHODS: This systematic review synthesized and critically appraised methods, constructs, and instruments used to assess school functioning in students with CFS. Searches were conducted in electronic databases (CINAHL, MEDLINE, PubMed, ERIC, and PsycINFO) to locate empirical studies that measured school functioning in children and adolescents with CFS.

RESULTS: A total of 36 papers met the inclusion criteria. By far the most commonly reported school functioning construct measured related to school attendance. This was followed by academic functioning, achievement motivation, and educational services received. Little consistency was found in the measurement of these constructs across studies.

CONCLUSIONS: The current review revealed that the school experiences of children and adolescents with CFS have rarely been characterized beyond school absenteeism. Improvements in current assessment methods are required to comprehensively understand the impact of CFS on school functioning. Completely understanding the multiple aspects of school functioning will help to inform targeted strategies to optimize educational outcomes for students with CFS.

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Unrest film showing tonight at 2 venues in Cardiff, 11 Jan 2018

Cardiff University MEDSOC invites people to join them

  • 6.30pm – followed by a panel including WAMES, MESiG and Dr Charles Shepherd
  • Hadyn Ellis Building, Cardiff University, Maindy Road, Cardiff CF24 4HQ
  • Free

Chapter Arts Centre

  • Market Road Cardiff CF5 1QE
  • 8.20pm
  • Tickets £5.10-£7.20 


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Courses for people with long term health conditions Cwmbran & Pontypool, 16 Jan 2018

EPP: Education Programme for Patients – courses in Torfaen


Are you living with a long-term health condition or caring for somebody who is?

This course gives guidelines to help you manage your condition and  improve your quality of life.

Torfaen six-week courses:

Cwmbran Library: Health & Wellbeing

  • Tuesdays: 16th Jan. to 20th Feb 2018
  • 10.30am – 1.00pm

The Settlement, Pontypool: Chronic Pain Management

  • Thursdays: 18th Jan. to 22nd Feb. 2018
  • 10.30am – 1.00pm

Bookings and info:       07483 128 077     01633 247 647

The Health & Wellbeing course covers a range of issues in general terms and doesn’t aim to give information relating to specific conditions:

  • Managing symptoms such as pain and tiredness
  • Dealing with anger, fear and frustration
  • Coping with stress, depression and low self-image
  • Eating healthily
  • Learning relaxation techniques and taking regular exercise
  • Improved communication with family, friends and health professionals
  • Planning for the future

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you and you are well enough to attend.

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Cytokine signatures in CFS patients: a Case Control Study & the effect of anakinra treatment

Research abstract:

Cytokine signatures in chronic fatigue syndrome patients: a Case Control Study and the effect of anakinra treatment, by Megan E. Roerink, Hans Knoop, Luuk J. A. C. Hawinkels, Leo A. B. Joosten and Jos W. M. van der Meer in Journal of Translational Medicine 2017 15:267

Cytokine disturbances have been suggested to be associated with the Chronic Fatigue Syndrome/Myalgic encephalomyelitis (CFS/ME) for decades.

Fifty female CFS patients were included in a study on the effect of the interleukin-1-receptor antagonist anakinra or placebo during 4 weeks. EDTA plasma was collected from patients before and directly after treatment. At baseline, plasma samples were collected at the same time from 48 healthy, age-matched female neighborhood controls. A panel of 92 inflammatory markers was determined in parallel in 1 μL samples using a ‘proximity extension assay’ (PEA) based immunoassay. Since Transforming growth factor beta (TGF-β) and interleukin-1 receptor antagonist (IL-1Ra) were not included in this platform, these cytokines were measured with ELISA.

In CFS/ME patients, the ‘normalized protein expression’ value of IL-12p40 and CSF-1 was significantly higher (p value 0.0042 and 0.049, respectively). Furthermore, using LASSO regression, a combination of 47 markers yielded a prediction model with a corrected AUC of 0.73. After correction for multiple testing, anakinra had no effect on circulating cytokines. TGF-β did not differ between patients and controls.

In conclusion, this study demonstrated increased IL-12p40 and CSF-1 concentrations in CFS/ME patients in addition to a set of predictive biomarkers. There was no effect of anakinra on circulating cytokines other than IL-1Ra.

Trial Registration: Identifier: NCT02108210, Registered April 2014


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