#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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What the Social Services & Well-being Act says about carers

The Social Services and Well-being (Wales) Act came into force on April 6, 2016. It aimed to improve the well-being of people who need care and support, and carers who need support.

What does this mean for carers?

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The challenges for WAMES in 2019

WAMES is looking back and looking forward

2018 was a challenging year for WAMES due to an increase in campaigning opportunities and reduced funding.

To add to the challenge, our team of volunteers faced added responsibilities and setbacks, which reduced the number of hours they were able to give to WAMES.  Forget about problems coming in 3s. Sometimes it felt more like 33s!

In spite of that we are relieved to say we were able to achieve many of our goals including:

  • representing Welsh pwme at the NICE scoping meeting
  • getting the Health Minister’s understanding and support for improving GP training
  • representing pwme at the Welsh Government’s All Wales Implementation group (AWIG) for ME/CFS
  • telling AMs in the Senedd about their Health Boards’ delay in implementing the Task & Finish Group recommendations and the need for informed GPs to diagnose & advise patients

Going forward we will have to make some hard decisions i.e. reduce the range of our activities so we can continue to work effectively for ME in Wales.

Our 2019 priorities will be:

  1.  Health campaign – our focus will be on raising awareness in the NHS and looking for ways to improve GP understanding of ME & CFS including:
    • working with Health Board reps on the All Wales Implementation Group (AWIG) to develop pathways and patient information, and encourage services
    • producing awareness articles for the Royal College of General Practitioners (RCGP)Welsh newsletter and other professional organisations
    • exploring ways to improve GP education and training with the HEIW, the RCGP & Dr Nina Muirhead
    • assisting Cardiff University School of Medicine students to undertake research projects on ME
    • representing pwme on the NICE guideline consultation
    • enlisting the support of groups such as the Community Health Council and voluntary organisation councils

2. Helpline – we will continue to provide one to one peer support and information about many aspects of living with ME in Wales via email, telephone and our website

3. Blog, Facebook & Twitter – we want to continue to keep everybody informed about the key research developments, consultation & campaigning opportunities, events & services in Wales and news to inspire or educate pwme and their carers

Other activities – apologies if we are unable to:

  • produce the me voice magazine
  • play a large part in the International Alliance for ME (IAFME)
  • run a major public campaign for ME Awareness week
  • find time to apply for large sums of money to develop projects & employ workers
  • visit local support groups
  • campaign on more than health issues
  • complete the Photography project – the volunteer running it has reluctantly had to withdraw

Help us work to improve health care for ME in Wales:

  • after many years our treasurer really needs to step down for health and family I change the world in just my pyjamasreasons. Can you help us find a replacement treasurer?
  • our secretary could achieve more with someone to share admin tasks
  • encourage more people to raise easy money by shopping online through Amazon Smile and Easy fundraising. We need to fund the website hosting & maintenance, stay insured and cover campaigning costs (travel and communications)
  • be a social media volunteer to help us stay online even when ‘life’ intervenes!

WAMES’ vision is for a Wales where adults and children with ME and CFS and their carers are taken seriously and treated with respect, where diagnosis, treatment and services are accessible without a battle.   

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Dr Unger says ‘CFS: It’s real, and we can do better’

Chronic Fatigue Syndrome: It’s Real, and We Can Do Better

In a Medscape blog post Dr Elizabeth Unger from the US Centers for Disease Control and Prevention (CDC) talks in a 5 minute video for healthcare professionals about the CDC’s revised web content on ME.

She emphasises that it’s a biological disease, the importance of validation and of preventing harm triggered by PEM.

Watch the video and read the transcript by registering with Medscape

Web Resources:

CDC: ME/CFS
ME/CFS in Children
ME/CFS Voice of the Patient
CDC: ME/CFS Programs
2015 Institute of Medicine Report on ME/CFS

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ME & CFS need rigorous science & respectful collaboration

ME & CFS need rigorous science & respectful collaboration.

There has been a flurry of articles in the media recently accusing internet trolls of forcing a few researchers out of ME/CFS research. WAMES takes the view that all research should be of a high quality, assessed and held to account, especially when it has a major impact on people’s lives.

However criticism of research should always be given in a respectful manner and should not descend into abusive personal attacks. The ability to listen, accept criticism and respond openly, but politely, is essential for all researchers, but also for those who comment on that research. We can all be mistaken or misled, but we can all, hopefully, be persuaded to change our minds, when necessary.

The ME community is understandably angry at the injustice and lack of understanding people with ME have endured in many walks of life, but we also have reason to be heartened by the high standard of biomedical research being carried out around the world, and the many different ways that clinicians, academics, politicians and the general public are beginning  to show their support and willingness to collaborate with us in our mission to remove the blight of neurological ME from our societies. WAMES will continue to report on and celebrate this.

WAMES vision is for a Wales where adults and children with ME and CFS and their carers are taken seriously and treated with respect, where diagnosis, treatment and services are accessible without a battle.   

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More volunteers needed for medical student research project

Cardiff School of Medicine student research projects

Dr Muirhead says:

“Thank you all so much for volunteering and getting in touch with your questions. I’m trying to get back to you all individually but as a person with ME myself this is proving a little challenging.

I just wanted to say thank you so much to everyone who has volunteered for both the Family Quality of Life Questionnaire study and the Role of the GP telephone study. The medical students and tutors at Cardiff University have been very impressed by the level of response.

Impact of ME/CFS on family – more volunteers needed

There are still opportunities to volunteer for the study using questionnaires to measure the impact of ME/CFS on the quality of life of individuals and their family members.

You don’t have to live in Wales to take part. Find out more

We will be sending out questionnaire packs until the end of the week (23rd March) so if you are interested, please e-mail me (as research supervisor) at nina.muirhead@nhs.net

If you have considered volunteering for this study but decided not to, please let Dr Muirhead or Jan know why jan@wames.org.uk as this information could be informative for the student.

Role of the GP

The student running the project on the role of the GP in care of ME/CFS has written:

“We would like to say a huge thank you to everyone who has been in contact to share their experiences and volunteer for my project. We have been overwhelmed by the amazing response and are looking forward to working with volunteers over the next few weeks.

As this is only a small, six-week project we will have to restrict the number of participants and have now ​reached the number required. The outcome of this project will be shared via the WAMES website.

Please keep an eye out on the WAMES website if you are interested in being involved in similar student research projects as Dr Muirhead hopes to work with more students in the future.”

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Dismissing chronic illness: a qualitative analysis of negative health care experiences

Dismissing chronic illness: A qualitative analysis of negative health care experiences, by Stephanie McManimen, Damani McClellan, Jamie Stoothoff, Kristen Gleason, Leonard A Jason in Health Care for Women International [Published online: 04 Mar 2019]

 

Research abstract:

In the US, medical training is inadequate regarding the symptomatology, prognosis, and treatment for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). As a result, many physicians lack the appropriate level of knowledge about effective methods for ME and CFS symptom reduction and often suggest inappropriate treatments, such as increased exercise or psychiatric services.

The authors’ purpose in this study was to analyze negative patient experiences with health care professionals. Patients with ME and CFS who reported experiencing a dismissive physician attitude were asked to detail the encounter via open-ended response on an international, online survey. Participant responses were thematically coded and analyzed using processes outlined by Patton.

Emergent themes related to perceived physician attitudes and how they impact patient wellbeing are described and their implications discussed. Additionally, we highlight suggestions for how the health care system can effectively approach this often marginalized patient group.

[Responses were coded into five main themes: Disbelief, Inappropriate Causes, Inappropriate Treatments, Insensitivity, and Lack of Knowledge.]

Read full article

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ACTivate your life well-being course begins Newport, 20 Mar 2019

ACTtivate Your Life course in Newport

a four session course that aims to teach people about stress and suffering caused by emotional issues and offers a slightly different approach to more conventional methods of dealing with emotional and physical problems.

Newport

  • Llyfrgell Maindee Library, 79 Chepstow Road, Newport NP19 8BY
  • Wed 6-8 pm     20 Mar – 10 Apr 2019

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

Check out the self help resources

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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Epstein-Barr virus induced gene-2 upregulation identifies a particular subtype of CFS/ME

Epstein-Barr virus induced gene-2 upregulation identifies a particular subtype of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, by Jonathan R Kerr in Frontiers in Pediatrics, 13 March 2019

 

Research abstract:

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a chronic
multisystem disease characterised by a variety of symptoms, and exhibits various features of an autoimmune-like disease. Subtypes are well recognised but to date are difficult to identify objectively.

The disease may be triggered by infection with a variety of micro-organisms, including Epstein-Barr virus (EBV). A subset of CFS/ME patients exhibit up regulation of EBV virus induced gene 2 (EBI2) mRNA in peripheral blood mononuclear cells (PBMC), and these patients appear to have a more severe disease phenotype and lower levels of EBNA1 IgG. EBI2 is induced by EBV infection and has been found to be upregulated in a variety of
autoimmune diseases.

EBI2 is a critical gene in immunity and central nervous system function; it is a negative regulator of the innate immune response in monocytes. Its heterogeneous expression in CFS/ME could explain the variable occurrence of a variety of immune and neurological abnormalities which are encountered in patients with CFS/ME.

The EBI2 subtype occurred in 38-55% CFS/ME patients in our studies. Further work is required to confirm the role of EBV and of EBI2 and its oxysterol ligands in CFS/ME, and to identify the most practical means to identify patients of the EBI subtype. There are two EBI2 antagonists currently in development, and these may hold promise for the treatment of CFS/ME patients of the EBI subtype.

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Stress management course Caldicot & Ebbw Vale begins 18 & 19 Mar 2019

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 18th March  – 29th April 2019, 10am – 12pm
  • Venue: Bethany Baptist Church, Neddern Way, Caldicot, NP26 4NJ

Ebbw Vale

  • Tues 19 March – 23 April 2019, 10 am -12 pm
  • Venue: Ebbw Vale Institute, Church Street, Ebbw Vale, NP23 6BE

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 attend.

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Assessment of Post-Exertional Malaise in patients with ME & CFS

Assessment of Post-Exertional Malaise (PEM) in patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): A patient-driven survey, by Carly S Holtzman, Shaun Bhatia, Joseph Cotler and Leonard A Jason in Diagnostics 2019, 9(1), 26 [Published: 2 March 2019]

 

Research abstract:
Considerable controversy has existed with efforts to assess post-exertional malaise (PEM), which is one of the defining features of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS).

While a number of self-report questionnaires have been developed to assess this symptom, none have been comprehensive, and a recent federal government report has recommended the development of a new PEM measure.

The current study involved a community-based participatory research process in an effort to develop a comprehensive PEM instrument, with critical patient input shaping the item selection and overall design of the tool. A survey was ultimately developed and was subsequently completed by 1534 members of the patient community.

The findings of this survey suggest that there are key domains of this symptom, including triggers, symptom onset, and duration, which have often not been comprehensively assessed in a previous PEM instrument. This study indicates that there are unique benefits that can be derived from patients collaborating with researchers in the measurement of key symptoms defining ME and CFS.

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