#TimeForUnrestWales – the Cabinet Secretary for Health’s plans for ME & CFS

#TimeForUnrestWales

 the Cabinet Secretary for Health’s plans for ME & CFS

In early May WAMES wrote to the Cabinet Secretary for Health, Vaughan Gething, expressing concern for the slow progress in implementing the Task & Finish Group Report’s Recommendations and asking him:

to provide, as a matter of urgency, support and finance for a national training and awareness programme.

See: #TimeForUnrestWales – the struggle to get an accurate diagnosis

The Cabinet Secretary has replied saying:

I welcome WAMES’ continued support for this agenda and the important challenge that your organisation brings to both Welsh government and health boards across Wales. I understand your frustration with the apparent lack of investment by health boards in services for those suffering from CFS/ME… I do recognise that more needs to be done for patients suffering with CFS/ME and other persistent pain conditions.

Vaughan Gething’s proposals:

  • National training programme – he asks WAMES to work with the All Wales Implementation Group (AWIG) to submit a proposal to Health Education and Improvement Wales for a national training programme, for consideration when it is fully established later this year.
  • E-training package – he has asked the AWIG to consider developing a training package to assist with more accurate diagnosis that could be loaded onto the e-learning platform for GPs, funded by the Welsh government.
  • Health Board work plans – he has asked his officials to continue to work with the all Wales implementation group and health boards to  push for CFS/ME and FM to be included by all health boards in next year’s IMTPs, as so far only some HBs have included them. [IMTP stands for: Integrated Medium Term Plan.  This Plan describes the progress a Health Board has already made and what they are planning to achieve over the next three years. If it is not in the IMTP, it is not considered a priority]
  • CFS/ME services review – he has asked Christine Roach, a secondee from Public Health Wales to review CFS/ME and FM provision in Wales and make recommendations on actions that can be taken by both health boards and the Welsh government to improve services for people with these conditions. This report will be concluded this calendar year and he has asked Christine to contact WAMES directly.

ME & Neurological Services – the Cabinet Secretary says:

With regards to the inclusion of CFS/ME within the NCIG (Neurological Conditions Implementation Group) the matter has previously been discussed multiple times in the last few years and whilst they recognise that the WHO classifies CFS/ME as a neurological disorder, they have struggled to reach a consensus on whether the condition should be included under the remit of the group.

In June 2017 the group agreed that the conditions would not be best served by being included within the remit of the group as the vast majority of patients were not receiving regular care from neuroscience services and were generally supported by other specialities.

This was further clarified with the Wales Neurological Alliance at the last meeting in March 2018.

WAMES does not find it satisfactory that Neurological Services should be permitted to exclude people with ME and CFS, and we do not agree that patients are ‘generally supported by other specialities’. We are however keen to work with anyone who is willing to develop services and our priority will be to ensure those services are appropriate and acceptable to people with ME and CFS.

WAMES welcomes the Cabinet Secretary’s support for ME & CFS and his desire to improve health services. WAMES will be working with the All Wales Implementation Group and Chris Roach throughout 2018 to implement his proposals and will report back to him.

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Unraveling the molecular determinants of manual therapy: an approach to integrative therapeutics for the treatment of FM &CFS

Unraveling the molecular determinants of manual therapy: an approach to integrative therapeutics for the treatment of Fibromyalgia and Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis, by José Andrés Espejo, María García-Escudero, andElisa Oltra in Open AccessInt. J. Mol. Sci. 2018, 19(9), 2673 [Published: 9 September 2018]

Review abstract:

Application of protocols without parameter standardization and appropriate controls has led manual therapy (MT) and other physiotherapy-based approaches to controversial outcomes.

Thus, there is an urgency to carefully define standard protocols that elevate physiotherapy treatments to rigorous scientific demands. One way in which this can be achieved is by studying gene expression and physiological changes that associate to particular, parameter-controlled, treatments in animal models, and translating this knowledge to properly designed, objective, quantitatively-monitored clinical trials (CTs).

Here, we propose a molecular physiotherapy approach (MPTA) requiring multidisciplinary teams, to uncover the scientific reasons behind the numerous reports that historically attribute health benefits to MT-treatments.

The review focuses on the identification of MT-induced physiological and molecular responses that could be used for the treatment of fibromyalgia (FM) and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). The systemic effects associated to mechanical-load responses are considered of particular relevance, as they suggest that defined, low-pain anatomic areas can be selected for MT treatment and yet yield overall benefits, an aspect that might result in it being essential to treat FM.

Additionally, MT can provide muscle conditioning to sedentary patients without demanding strenuous physical effort, which is particularly detrimental for CFS/ME patients, placing MT as a real option for integrative medicine programs to improve FM and CFS/ME.

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ACTivate your life well-being course Bronllys, Powys 20 Sep 2018

ACTivate Your Life classes – Thursdays (4 weeks)

  • Event Date: 20 Sep  2018
  • Where:  Concert Hall, Bronllys Hospital, Brecon LD3 0LU
  • Time:  1 – 3 pm
  • Thursdays – 20th Sep, 27th Sep, 4th Oct, 11th Oct
  • organised by Centre for long term condition management, Powys Health Board

4 weekly ACTivate Your Life classes will teach you:

  • How your mind works
  • How your reactions may be making problems worse
  • How to make wise decisions
  • How to do what matters to you
  • How to face up to life

This is a free course designed to teach skills and manage how we react to problems. There is no assessment, no registration and no waiting list. Just turn up, take a seat and learn!

An overview of the programme can be found here

Feel free to bring someone along for support.

For more information on these programmes please contact:

activate.pow@wales.nhs.uk or phone 01874 712 449

 

NB This course is aimed at a wide range of people to teach general life skills.  People with ME should check the details carefully to make sure it is suitable for you and you are well enough to take part.

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Stress management course begins Abergavenny 20 Sep 2018

Stress management course Abergavenny

The 6-week course in Stress Control will help you to understand stress, how it can affect you and how to control it. Each week you will learn new Stress Control skills and will learn how to fit these into your own personal Stress Control toolkit.

The six sessions are:

  • Learning about stress
  • Controlling your body
  • Controlling your thoughts
  • Controlling your actions
  • Controlling panic and sleep problems
  • Boosting wellbeing and looking to the future

Each person on the course receives a free Stress Control manual, containing course information, home activities and an audio CD of various mindfulness and relaxation activities. You can download the separate sections of the manual and access the audio here

Stress can affect all of us, whether we are young or old, male or female, rich or poor. Experiencing problems with stress doesn’t mean that we’re stupid, weak or mad. Stress is normal.

Abergavenny

  • Thurs 20th Sep – 25th Oct 2018, 1-3 pm
  • Venue: Abergavenny Community Centre, Park Street, Abergavenny, NP7 5YB

All courses above are designed to be as accessible as possible, no personal details are taken, no referral or prior booking is required, and the non-interactive format ensures that nobody is put on the spot or asked to discuss any personal problems. You are welcome to bring a friend or relative, all are welcome. Just turn up!

More info:  see the Aneurin Bevan Health Board website or contact the information centre on 0330 053 5596  & select option 2

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Videos: Prof Peter Rowe & Dr Nigel Speight, discuss paediatric ME/CFS

Paediatric ME/CFS (from Voices from shadows website) 

Two world renown ME/CFS paediatricians, Prof Peter Rowe and Dr Nigel Speight, discuss paediatric ME/CFS diagnosis and management in two short videos for medical professionals, following publication of the comprehensive manual Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer  published in Frontiers 2017.

Peter Rowe MD is a Professor of Paediatrics and is Director of the Children’s Center Chronic Fatigue Clinic at the Johns Hopkins University School of Medicine, Baltimore, USA. His areas of clinical expertise include chronic fatigue syndrome, fibromyalgia and orthostatic intolerance. Prof Peter Rowe played a  major role in the production of  the recent  Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. He was also a member of the team which produced the very influential report: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Published in 2015 by the National Academy of Medicine, USA, it includes diagnostic criteria, a clinicians guide and a comprehensive literature review.

Dr Nigel Speight is a  consultant Paediatrician with a long standing special interest in ME, based in Durham, UK. He is a medical advisor for several charities including the ME Association, The Young ME Sufferers Trust and the 25% ME Group. Dr Speight  was among the expert ME/CFS paediatricians contributing to Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. He previously contributed to the “Myalgic Encephalomyelitis International Consensus Criteria” and it’s related “Primer’ for Medical Practitioners. 2011 He served on the Chief Medical Officer’s Working Party on ME 2002 and also the College of Paediatrics and Child Health Guidelines Group 2004.

Part 1. Diagnosis of paediatric ME/CFS with Dr Nigel Speight and Prof Peter Rowe

Part 2. Severe ME/CFS and management of paediatric  ME/CFS

Watch videos & find more links to resources

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ACTivate your life well-being course, begins Bridgend 20 Sep 2018

ACTivate your life course – Bridgend

The course is based on Acceptance and Commitment Therapy which teaches people how to reduce their suffering and how to lead a richer, more fulfilling life by accepting the things they cannot control and making a commitment to do the things that they really care about.

We all experience suffering, pain and distress at some point in our lives, whether this be psychological or physical, so anyone and everyone is welcome to attend.

The course is run weekly over four sessions for approximately 2 hours with a break halfway through the session.

The four sessions:

  • ACT 1- You are not your mind
  • ACT 2- Facing up to your life
  • ACT 3- Being mindful
  • ACT 4- Living wisely, living well

Bridgend

  • Bridgend Life Centre, Angel Street, Bridgend CF31 4AH
  • Room: Conference room
  • Thursday 20 Sep – 11 Oct 2018     5.30 – 7.30 pm

The courses and workshops are free, self-referral and open access, so there is no need to book or register, simply choose what you feel is the most suitable for you and turn up; feel free to bring someone along and spread the word. There is no attendance register, but it is recommended that you attend all of the sessions to get the most out of it, although you can always switch between courses to fit in with your commitments.

For more information contact the Living Life Well programme at Abertawe Bro Morgannwg Health Board.       07967612246      living.lifewell@wales.nhs.uk

Self help material can be used to improve feelings of stress, low mood, anxiety and other wellbeing difficulties.

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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Montgomery ME support group meets 19 Sep 2018

You are invited to join people with ME and their carers for a chat and a cuppa at the Dragon Hotel, Montgomery on Wednesday 19 September 2018 between 2.30 and 3.30pm.

Contact Donna Teague beforehand to confirm the meeting is going ahead.  dateague@hotmail.co.uk

Next meeting: TBC

 

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Unrest in the Senedd 24 Oct 2018 – Ask your AM to attend

Unrest in the Senedd 24 Oct 2018               #TimeForUnrestWales

Unrest – An eye-opening 20-minute film screening and discussion about the state of health & social care for ME/CFS in Wales.

For:     AMs, medical professionals and interested parties
Date:  Wednesday 24th October, 12:00 – 13:30
Location: Media Briefing Room, The Senedd, Cardiff

MESiG are organising a screening of a short version of the film in the Senedd and invite people with ME and carers to encourage both  their constituency and regional AMs to attend.

Find your AMs

Write explaining why you wish them to attend. A template letter is available here.

Invitation for AMs

AGENDA: 12:00 – Registration & Photoshoot
12:15 – Introduction
12:20 – Film
12:40 – Speakers: WAMES, a Patient & a Carer
12:50 – Q&A
(Tea and coffee provided)

 

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Chinese CFS patients have alterations in their oral microbiome composition & function

Chronic fatigue syndrome patients have alterations in their oral microbiome composition and function by Taiwu Wang , Lei Yu , Cong Xu, Keli Pan, Minglu Mo, Mingxiang Duan, Yao Zhang , Hongyan Xiong  in PLoS One. 2018 Sep 11;13(9)

Research abstract:

Host-microbe interactions have been implicated in the pathogenesis of chronic fatigue syndrome (CFS), but whether the oral microbiome is altered in CFS patients is unknown.

We explored alterations of the oral microbiome in Chinese Han CFS patients using 16S rRNA gene sequencing and alterations in the functional potential of the oral microbiome using PICRUSt. We found that Shannon and Simpson diversity indices were not different in CFS patients compared to healthy controls, but the overall oral microbiome composition was different (MANOVA, p < 0.01).

CFS patients had a higher relative abundance of Fusobacteria compared with healthy controls. Further, the genera Leptotrichia, Prevotella, and Fusobacterium were enriched and Haemophilus, Veillonella, and Porphyromonas were depleted in CFS patients compared to healthy controls. Functional analysis from inferred metagenomes showed that bacterial genera altered in CFS patients were primarily associated with amino acid and energy metabolism.

Our findings demonstrate that the oral microbiome in CFS patients is different from healthy controls, and these differences lead to shifts in functional pathways with implications for CFS pathogenesis. These findings increase our understanding of the relationship between the oral microbiota and CFS, which will advance our understanding of CFS pathogenesis and may contribute to future improvements in treatment and diagnosis.

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Stress management course Caldicot begins 17 Sep 2018

The 6-week course in Stress Control will help you to understand stress, how it can affect you and how to control it. Each week you will learn new Stress Control skills and will learn how to fit these into your own personal Stress Control toolkit.

The six sessions are:

  • Learning about stress
  • Controlling your body
  • Controlling your thoughts
  • Controlling your actions
  • Controlling panic and sleep problems
  • Boosting wellbeing and looking to the future

Each person on the course receives a free Stress Control manual, containing course information, home activities and an audio CD of various mindfulness and relaxation activities. You can download the separate sections of the manual and access the audio here

Stress can affect all of us, whether we are young or old, male or female, rich or poor. Experiencing problems with stress doesn’t mean that we’re stupid, weak or mad. Stress is normal.

Caldicot

  • Mon 17th Sep – 22nd Oct 2018, 2-4 pm
  • Venue: Bethany Baptist Church, Neddern Way, Caldicot, NP26 4NJ

All courses above are designed to be as accessible as possible, no personal details are taken, no referral or prior booking is required, and the non-interactive format ensures that nobody is put on the spot or asked to discuss any personal problems. You are welcome to bring a friend or relative, all are welcome. Just turn up!

More info:  see the Aneurin Bevan Health Board website or contact the information centre on 0330 053 5596  & select option 2

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Confirmatory factor analysis of a ME & CFS stigma scale

Confirmatory factor analysis of a myalgic encephalomyelitis and chronic fatigue syndrome stigma scale, by Julia M Terman, Jessica M Awsumb, Joseph Cotler, Leonard A Jason in Journal of Health Psychology, September 2018 [Published online: September 5, 2018]

Research abstract:
This study adapted a chronic illness stigma scale and explored its psychometric properties.

The main purposes were to confirm the factor structure of the instrument with this population and address the previous factor intercorrelation discrepancies.

Five hundred and fifty-four individuals with myalgic encephalomyelitis or chronic fatigue syndrome completed the adapted stigma scale. Results document the stigma experienced by an international sample of individuals with myalgic encephalomyelitis and chronic fatigue syndrome. Factors demonstrated good internal consistency, and a model fit was found in a confirmatory factor analysis.

Participants endorsed high levels of stigma, estrangement, and disclosure. Implications of these findings and future directions are discussed.

Read full article

Extract from conclusion:

In summary, the newly confirmed ME and CFS Stigma Scale demonstrated high levels of
stigma and related variables for people with the illness. Stigma may serve as a risk factor for a variety of social and health problems (Clement et al., 2015; Hutton et al., 2013; Looper and Kirmayer, 2004; Sehlo and Bahlas, 2013).

This article’s findings bring attention to the high levels of perceived stigma in ME and CFS.
Healthcare professionals, co-workers, friends, and family members need to work together to decrease the stigmatization of patients with ME and CFS. On a structural level, educational interventions can be implemented to decrease physician stigma. These interventions may involve seminars with factual information and videotaped cases, as such interventions have demonstrated effectiveness in improving attitudes toward ME and CFS (Friedberg et al., 2008).

Peer-led approaches may be most successful at combatting stigma, so interventions may emphasize the importance of participant research and bringing in guests with lived experience (Murman et al., 2014).

In addition to developing a consensus on the name and research case definition, which would reduce some of the ambiguity that professionals have with ME and CFS (Jason et al., 2018), there is also a need to develop treatment interventions that are not stigmatizing to patients, such as pacing and learning to stay within one’s energy envelope (Jason et al., 2013). On an interpersonal level, individuals can focus on active listening when people disclose challenges with ME and CFS. As demonstrated through the DPM, positive disclosure experiences may have profound effects in a patient’s future experiences.

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