EPP Health & well-being courses Newport, Jan – Jun 2020

EPP Health & well-being courses in Newport 2020

Early booking is advised as many 2020 courses are already fully booked.

 

Living with Chronic Pain

  • Start date: 10 January 2020
  • Venue: Newport Gavo, Ty Derwen
  • 6 week Course:  Friday 12.30 pm – 3 pm

 

Living with Long Term Conditions

  • Start date: 27 March 2020
  • Venue: Newport Salvation Army
  • 6 Weeks Course: Thursday 10 am – 12.30 pm

Living with Chronic Pain

  • Start date: 10 June 2020
  • Venue: Newport Salvation Army
  • 6 week Course: Wednesday   10 am – 12.30pm

To book a place on one of these FREE courses or for more information about courses in your area, please contact:

Jules Godden,   EPP Co-ordinator    01633 247674     jules.horton@gavowales.org.uk

Gwent Association of Voluntary Organisations, Ty Derwen, Church Road Newport NP19 7EJ

@EPPCymru  Follow on Facebook – regularly updated with new course dates

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 cope.

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EPP self-care courses for carers, Llandudno & Wrexham Jan-Feb 2020

Caring for Me and You

A course to help people who care for someone with a long term health condition to maintain and improve their quality of life through self-management.

The course covers topics such as staying healthy, getting help, challenging behaviours, improving fatigue and relaxation.

To find out more, suggest a venue for future courses or to book a place in advance, contact:

BCU Self Care Office   03000 852280             03000 852281

Fax : – 03000 852282        EPPCymru.BCUHB@wales.nhs.uk

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Stress management course begins Swansea 14 Nov 2019

The Stress Control course

The Stress Control course helps people to understand how stress and associated problems such as low mood, anxiety, panic and sleep affect them. The aim of the course is to help turn you into your own therapist; you are the expert on you, but the course is here to guide you in improving your understanding and management of stress.

The course is based on Cognitive Behavioural Therapy which looks at the connection between thoughts, feelings, bodily sensations and behaviours to help people discover what may be maintaining their stress and learn ways to manage it more effectively.

The course is run weekly over six sessions for approximately 90 minutes with a break halfway through the session.

The six sessions:

  1. What is stress? The first steps
  2. Controlling your body
  3. Controlling your thoughts
  4. Controlling your actions
  5. Controlling panic feelings and medication
  6. Controlling your sleep, wellbeing and controlling your future

Swansea

  • Swansea YMCA, 1 The Kingsway, Swansea SA1 5JQ
  • Room: Theatre
  • Thurs 14th Nov – 19th December  2019    2-3.30 pm

You can turn up and register on the day of the course and bring a friend. Free course materials and relaxation CD will be available.

Stress Control is run as part of the Abertawe Bro Morgannwg Health Board Living Life Well Programme.

For more information contact the team: 07967 612246  living.lifewell@wales.nhs.uk

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 cope.

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Stress management courses begin Newport 13 & 20 Nov 2019

Stress control course

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.

Newport

  • Wed 13th Nov – 18th Dec 2019, 6-8 pm
  • Venue: Llyfrgell Maindee Library, 79 Chepstow Road, Newport NP19 8BY

Newport

  • Wed 20th Nov – 8th Jan 2019, 1 – 2.45 pm
  • Venue: Llyfrgell Maindee Library, 79 Chepstow Road, Newport NP19 8BY

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

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 cope

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Rethinking the standard of care for ME/CFS

Rethinking the standard of care for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, by Fred Friedberg, Madison Sunnquist, Luis Nacul in Journal of General Internal Medicine, Published online: 21 October 2019 [doi.org/10.1007/s11606-019-05375-y ]

 

Article abstract:

For over two decades, the standard of care for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been cognitive behavior therapy (CBT) and graded exercise therapy (GET). Both interventions had been recommended by the US Centers for Disease Control and the UK NICE guidelines.1

Behavioral intervention as the clinical standard was given a considerable boost by the 5 million–pound PACE trial, a large multi-arm randomized trial of CBT and GET launched in 2007.2 This British government–funded trial was intended to definitively answer whether such interventions were beneficial in ME/CFS. In their 2011 and 2013 publications, the PACE trial authors announced with widespread publicity that 22% of their patients had “recovered” and 59–61% had clinically improved across the CBT and GET interventions.2, 3

More generally, multiple literature reviews have reported that these therapies are not only effective at improving fatigue and, to a lesser extent, physical function in ME/CFS but also safe.4, 5, 6 It would seem obvious then that good clinical care of these patients would include these behavioral interventions. But, a closer look at these trials has generated many concerns about their applicability to these patients. This perspective critically examines their findings and more generally discusses the behavioral intervention literature in ME/CFS. Finally, we briefly describe a pragmatic clinical approach for these often-marginalized patients.

CARING FOR ME/CFS PATIENTS

In clinical practice, many individuals presenting with the common symptom of persistent fatigue may benefit from activity-based behavioral interventions, e.g., Friedberg et al.26 However, persistent fatigue is not equivalent to the multi-symptom debilitating illness of ME/CFS. Despite the lack of approved treatments or a fully articulated standard of medical care, there are still many actions physicians can take to help these underserved patients. First, practitioners can acknowledge the biomedical reality of the illness and their belief that the patient is genuinely ill. Next, clinicians can help patients to better manage a major illness challenge: how to minimize debilitating post-exertional malaise by learning to stay within their energy envelope.36

The energy envelope delineates the amount of energy that a ME/CFS patient has available to perform all activities.37 The size of this energy envelope can vary from day to day and between patients with some patients lacking energy for basic activities of daily living. When patients exceed their limited energy levels, they experience post-exertional worsening of symptoms and functioning. Medical providers can teach patients how to recognize their own personal energy limits and use pacing (dividing symptom-producing activities into smaller parts with interspersed rest intervals) to stay within those limits.34, 37 Once pacing is effectively used, some patients may be able to use an individualized exercise plan to increase available energy and functioning while avoiding post-exertional worsening.34, 36

Practitioners can also help patients with appropriate pharmacological and non-pharmacological treatments.38, 39 This includes treatments for unrefreshing sleep, e.g., trazodone and low-dose tricyclic antidepressants, and sleep hygiene measures.

In addition, pain can be addressed with low-dose naltrexone40 and anti-epileptics, e.g., gabapentin, and orthostatic intolerance can be treated with fludrocortisone and salt loading. Comorbidities can be managed using standard of care. Drugs should usually be started at low doses because patients can be sensitive to medications. If needed, patients can be referred to counseling to improve coping with the severe impacts of ME/CFS on quality of life.

For optimal patient care, we recommend a ME/CFS specialist or a specialist center supported by a multi-disciplinary team. Unfortunately, few of these practitioners or centers are available, which highlights the need for provider education and training regarding this illness. Realistically, when specialists are not available, care is best provided by the generalist (internal medicine or family doctor) working as part of a multidisciplinary team including expertise (as available) in immunology, infectious disease, cardiology or neurology, psychology, occupational therapy, and social work. With this interprofessional approach, practitioners can lessen harms while helping patients improve their health, function, and quality of life to the extent possible.

Further information on clinical management may be found in the following sources: a free practitioner’s guide to ME/CFS,34 a clinically focused review, 41 and a pragmatic clinical paper.36

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Stress management course begins Chepstow 12 Nov 2019

Stress control course

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.

Chepstow

  • Tues 12th Nov – 17 Dec 2019, 5.30 – 7.30 pm
  • Venue: Chepstow Fire Station, Regent House, Mounton Road, Regent Way, Chepstow, NP16 5BY

All courses  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

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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New research initiative: ME/CFS Biomedical Partnership

ME/CFS Biomedical Partnership: Genetics and Biomarkers

Prof Chris Ponting

This is the working title for a partnership of researchers, including Professor Chris Ponting of the UK CMRC, and Dr Luis Nacul of the Cure ME UK ME/CFS Biobank (UKMEB) team and ME/CFS patients, carers and public.

Early in 2020, the partnership will make a grant application to the Medical Research Council (MRC) and the National Institute for Health Research (NIHR) for a very large genetic study, a genome-wide association study, and a major expansion of the UKMEB.

The Medical Research Council (MRC) will fund a workshop later this month (November 2019) to help the Partnership explore how to make its application as robust as possible.

The plan:

  • The Partnership will apply for funding for a large genetics study as well as an

    Dr Luis Nacul

    expansion of the UK/MECFS Biobank

  • If funded, the genetics study will require saliva samples from 20,000 patients.
  • The study will look for the potential genetic cause(s) of ME/CFS.
  • Submitting a sample will be made as easy as possible in order to enable as many patients as possible to take part.
  • Patients, and their representatives, will form an important part of the Partnership.

What is a genome-wide association study?

A genome-wide association study (GWAS) is a very large genetic study that seeks to uncover some of the biological roots of ME/CFS. By probing small DNA differences among people, a GWAS can help to pinpoint the genetic causes of disease and then can help to guide drug development.

This design has previously proved helpful in identifying genes together with molecular and cellular pathways that contribute to disease risk.

To work well, the study needs to recruit around 20,000 patients whose DNA will be compared with that of similar numbers of non-ME/CFS matched controls(i.e. people from a similar population but who do not have ME/CFS).

More information:

MRC: ME/CFS Workshop – 2019

The ME/CFS Biomedical Partnership: Genetics and Biomarkers – Genome-wide association study: questions & answers

Cure ME: A Collaborative Research Proposal with the CMRC

ME Association: MRC/NIHR Workshop

Action for ME: ME/CFS Biomedical Partnership to apply for funding 

ME Research UK: ME/CFS Biomedical Partnership to apply for funding

ME/CFS Research review: Bold plans for two big biomedical research projects

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ACTivate your life course begins Port Talbot 11 Nov 2019

ACTivate your life course

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

Neath Port Talbot

  • Venue: St Paul’s Centre, Gerald Street, Port Talbot, SA12 6DQ
  • Room: Main Hall
  • Monday 11th November – 2nd December 2019    2-4 pm

The courses and workshops are free, self-referral and open access, so there is no need to book on 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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Anxiety management course for teenagers, Bangor, 14 Nov 2019

Anxiety management course

  • for young people aged 14-18
  • Bangor
  • Thurs 14 Nov – 19 Dec 2019
  • 4-5 pm

Mind Ynys Mon a Gwynedd runs five and six week self-management courses for young people aged 14-18 in the community.

The courses are run within a Cognitive Behavioural Therapy (CBT) framework which looks at the relationship between how our thoughts affect our emotions and feelings, which then affects our behaviour. Some courses also incorporate particular mindfulness practices.

Current courses are Anxiety Management and Building Self Esteem.

For more info or to book a course contact info@monagwyneddmind.co.uk

01286 685 279   Text: 07794596301

See more about courses

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Is a diagnostic blood test for CFS on the horizon?

Is a diagnostic blood test for chronic fatigue syndrome on the horizon?, by
Michael Maes, Laura Andres & Gerwyn Morris in Expert Review of Molecular Diagnostics, Published online: 18 Oct 2019 [https://doi.org/10.1080/14737159.2020.1681976]

 

Expert opinion

Most if not all biomarkers of ME/CFS are pathway biomarkers although a few etiologic or predisposing biomarkers were delineated. These biomarkers indicate the multiple immune, oxidative, and metabolic pathways that underpin the pathophysiology of ME/CFS.

However, until now, no diagnostic, treatment or staging biomarkers could be developed and, therefore, future research should develop those types of biomarkers employing data mining models with biomarkers of the pathways described herein as input variables. Moreover, pathway-phenotype algorithms should be modeled which may be used to diagnose biomarker-validated symptom dimensions including disabling fatigue, cognitive impairments, post-exertional malaise, fibromyalgia-like symptoms, and irritable bowel syndrome.

All in all, a new ME/CFS diagnostic blood test useful to make the diagnosis of ME/CFS is not yet on the horizon. The way forward is to develop adequate diagnostic criteria based on machine learning and to combine biomarkers and clinical phenotypes into pathway-phenotypes using machine learning techniques.

Read the authors’ review of the research into biomarkers so far.

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