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  • the activities of WAMES
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Wellness with WNO: Could breathing & singing coaching help people with ME?

Wellness with Welsh National Opera

 

Could breathing & singing coaching help people with ME?

 

WAMES has met with a representative from the Welsh National Orchestra to find out about their Wellness with WNO initiative.  They already offer a virtual singing and breathing programme to Health Boards for people with Long COVID, and are exploring how to include people with ME in those groups.

The 6 week programme was designed to support people experiencing feelings of breathlessness and anxiety with the aim of  improving breath control, lung function, circulation, and posture. A major benefit seems to be the ability to experience something fun and relaxing in an understanding environment.

April Heade, the WNO producer assured us they had no medical goals, and didn’t see the course as a treatment for Long COVID or ME/CFS, but she had observed that the social interaction, breathing exercises and a chance to sing simple songs appeared to release endorphins and bring a smile to people’s faces. There is also some evidence that singing has general health benefits and can affect blood flow and neuroplasticity of the brain but there is no attempt to use the sessions as medical tools.

Of course, any activity can trigger a PEM flare up or relapse, but April assured us that they understood that ill people needed to be flexible and might not always be able to join in with everything. The advantage of being online, is that on worse days people can monitor a session and join in when they can. A good voice is not necessary as everybody is muted (except the course presenters) and nobody will ever know you are not a professional singer!

This course will not suit everybody but some people may feel they are well enough or are managing their symptoms sufficiently well to make space for it in their weekly management plan.

April explains the content of the hour long sessions

WAMES would like to hear from you if you have tried this or a similar course, or would like to. Did you enjoy it? Did it help you? Would you recommend it? What advice or questions do you have?

Drop us a note (or a song) jan@wames.org.uk or use the contact form.

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When art eases pain – Diamond Art

When art eases pain

 

PF from south Wales has found better pain management through ‘Diamond Art.’

I want to tell you about the new way I’ve found to help me with my pain management. This is through the process of doing ‘Diamond Art, (DA).

I have in the past been artistically active using various mediums of paint (watercolour & acrylic), charcoal, pen, oil pastels & dry pastels, all of which need mental energy for creativity as well as physical energy for the application.

I have found myself, in the last couple of years, unable to be creative in any way & colouring by numbers isn’t my thing. I cannot colour in from pre-printed forms as I find the lines too thick, which spoil the end result, or the lines are so fine I can’t see them!

However recently in the last six months I tried my hand at ‘Diamond Art.’ I like to refer to it simply as DA.

Create a Diamond painting by affixing vibrantly coloured resin rhinestones to a self-adhesive canvas with a diamond art kit

To those who aren’t familiar with DA, you can purchase a pack costing from £1.99 to £50, which will consist of:

  • a pre-printed, slightly gummy canvas. Different sizes are available & the gummy element is a glue for beads to be attached to the canvas.
  • a range of coloured beads specifically for each canvas, possibly from 23 – 38 different colours. The colours are coded into the canvas print. The greater the number of colours, the more difficult it becomes, along with the complexity of the canvas print & size you choose.
  • you are also supplied sometimes with other items which usually include a type of stylus similar to a pen with which you apply the beads to the canvas.

This activity is good for beginners & those who enjoy more complexity with a higher skill level. A kind person gifted me a pack so I could try my hand at it.

I admit I struggled to cope with the codes & stickiness of the canvas for a while, as my eyesight & brain fog do hinder me, as well as needing physical effort.

However, I just spent some time looking at it all before doing anything, to get my head around the codes which usually consist of numbers ranging from 1 – 9, alphabetical letters & some symbols relating to each small bag of beads.

A helpful trick I found was if I wrote the correct code with permanent ink on each pack of coloured beads, before I began to apply the beads to the canvas, this helped me visually and with my cognitive issues & brain fog. There are canvases with a range of complexity – simple to complex –  to suit every cognitive experience.

I found myself in a state of calm

Amazingly as I progressed through my first canvas, I found myself in a state of calm. I just focused on the process of applying the beads to the canvas whilst other forms of anxiety & my chronic pain went to the back of my mind. This calmness was amplified within me as I found the range of colours a form of colour therapy where certain colours can lift you towards a happier state of mind, just as art used to do for me.

The different type of processes between DA and other forms of Art  means I find the former so much easier. Art requires so much creative energy. In DA it is not needed. So much so, I have written this article in hope someone may find it helpful in their pain management. I hope you do find it helps, given time to overcome the initial learning curve of the codes. Please pass on what can be ‘good news!’

Please note: I do not receive any promotions or gifts, etc from persons or companies in regards to DA.

More information:

Wiki How: How to Diamond Paint 

More articles by PF:

Pacing my way through Pain Clinic

WAMES is always keen to hear stories of what helps you. Contact the jan@wames.org.uk or complete a contact form.

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World ME day: Share the ME factsheet

Build a better understanding of ME – share the WMEA ME factsheet

 

As WAMES joins countries round the world on #WorldMEday in 2024 calling for a #GlobalVoiceForME, we are fortunate to be able to share a fact sheet that highlights the key characteristic of the illness, Post-Exertional Malaise (PEM), also known as Post-Exertional Symptom Exacerbation (PESE).

Produced with the help of people affected by ME in many countries involved in the World ME Alliance, it is available in a range of languages, so it can help build a basic understanding of ME across borders.

Myalgic Encephalomyelitis (ME), also preciously known as chronic fatigue syndrome (CFS), is a disabling, chronic and complex disease.

People with ME are not able to function the same way they did before they became ill. ME changes people’s ability to do daily tasks, like taking a shower or preparing a meal. It often makes it hard to keep a job, go to school, and take part in family and social life. At least 1 in 4 people with ME are bed- or house-bound for long periods during their illness.

ME can get worse after any activity, and pushing harder can make someone with ME more ill. This hallmark symptom is known as Post-Exertional Malaise (PEM).

The COVID-19 pandemic has brought this issue to the forefront, with a growing number of people with long COVID experiencing PEM. This has further highlighted the already urgent need for increased awareness and understanding of ME and its associated symptoms.

Download the ME Factsheet
English           Welsh

English easy-formatting (useful for text-speech software)

Español          Français         Italiano         Portugese     

Hebrew          Catalan

The simple information provided should be known by every healthcare professional, and we hope will give the general public a better understanding of the huge impact of ME.

Whether you are only hearing about ME for the first time, are a healthcare professional or maybe a family member of someone with ME, we hope that our new factsheet will give you a better understanding of this disease and its associated symptoms. Please share it widely with friends, family, and colleagues to help us raise awareness and understanding of this important issue.

FInd out more about World ME day:

World ME Day: ME is a global crisis: Be a #GlobalVoiceForME

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World ME Day: ME is a global crisis: Be a #GlobalVoiceForME

Together, we are battling a global health crisis

 

With your support, we will be a #GlobalVoiceForME

This year marks the 55th anniversary since the World Health Organization (WHO) officially acknowledged ME as a neurological condition, highlighting the urgency of addressing this global health crisis.

In recent times, the landscape of ME has evolved, with COVID-19 triggering a surge in the numbers of individuals affected by ME.

Today, we estimate that more than 55 million individuals worldwide (maybe up to 110 million) are living with the debilitating effects of this condition. Amidst these escalating numbers, WAMES and other member organisations of the World ME Alliance are actively joining forces, amplifying our support for initiatives that seek to address the multifaceted impact of ME on individuals and communities alike.

Bring your voice to building change together!

  • 55 years since the World Health Organization (WHO) officially acknowledged ME as a neurological illness
  • 55 million upwards now have ME following the COVID pandemic
  • no diagnostic test, no cure, no universal treatment
  • international cooperation needed to forge a breakthrough!
  • we ask the WHO and countries round the world to support #WorldMEDay and take action!

Make a poster declaring yourself as a #GlobalVoiceForME to share on social media.  Read the stories from people around the world

Make a twibbon for use on X

Bridging borders online event 10 May 2024 Find out what advocates round the world are doing to raise awareness of ME

Invite the UK WHO rep to be a #GlobalVoiceForME

Share the World ME film – to be posted on 12 May

Share the ME factsheet – English, Cymraeg, other languages

Press release: Unveiling the Global ME crisis

#WorldMEday    #GlobalVoiceForME

 

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World ME day: Bridging borders event 10 May 2024

Bridging borders – a WMEA online event 

 

The Bridging borders event, hosted by the World ME Alliance, will take you on a journey across the globe. ME advocates from a variety of countries will share their innovative advocacy campaigns aimed at breaking down barriers and amplifying the voices of those affected by ME.

Speakers:

Mlindeni Gabela and Sam Pearce – South Africa
Giada da Ros – Italy
Hélène Bennès – France
Emily Taylor – USA
Linda Campbell – Northern Ireland
Martin Hippe – Germany
Joan Serra Hoffman – Portugal
Sonya Chowdhury – UK

Find out more about the speakers

Join us!

Support the international ME family and be inspired to do more in your own advocacy.

Friday 10th May at 5pm BST

Register for free to watch on zoom

RSVP to watch on Facebook

building a #GlobalVoiceForME    #WorldMEday

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World ME day: Make & share a #GlobalMEVoiceForME poster

Show the world you are a #GlobalVoiceForME!

 

Create a custom poster for #WorldMEDay and join WAMES and advocates from Wales and around the world highlighting the global crisis of ME.

Bring your voice to building change together!

  • 55 years since the World Health Organization (WHO) officially acknowledged ME as a neurological illness
  • 55 million upwards now have ME following the COVID pandemic
  • no diagnostic test, no cure, no universal treatment
  • international cooperation needed to forge a breakthrough!
  • we ask the WHO and countries round the world to support #WorldMEDay and take action!

To take part go to the World ME Alliance website and follow the instructions to insert a photo of yourself in the template. Save it and share your poster on social media to boost the campaign.

[If you experience problems inserting your photo on the website, try downloading an empty frame and inserting on your own device]

Michelle from South Wales says: “Out of sight, out of mind, to all health professionals because I am both confined to my bed and home and I cannot visit them! Time for change.”

See more voices for ME from around the globe and find out how to take more action: Global voice for ME

Ask the UK rep to the World Health Organisation to be a #GlobalVoiceForME

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Welsh Government on NHS training for ME/CFS

How will health professionals learn about ME in Wales?

 

Decades of stigma, misunderstanding and struggle have been experienced by people with ME/CFS when they have attempted to access healthcare in Wales. Knowing this, and realising that no local medical experts have made themselves known, WAMES has been calling for a national programme of training for health professionals using experts from outside the country. (See Delivery plan for Wales proposal).

The response from the Welsh Government to North Wales MS, Mark Isherwood’s Written Questions (see below) about the subject in the Senedd, has been disappointing. Only one course has been run, teaching a Lifestyle medicine approach to ME/CFS. This has 6 pillars: mental wellbeing; minimising harmful substances: healthy relationships; healthy eating; sleep; physical activity!

WAMES has been asking for NHS Wales to run widespread training on the 2021 NICE guideline and to encourage its use across the health service. #ImplementNICEmecfs

Unfortunately WAMES is still hearing about GPs telling patients they have a psychological condition, showing the misunderstanding about ME/CFS persists. Whenever we talk to Welsh Government and Health Boards they ask for examples of patients’ recent experiences and how often the problems arise.

Please tell us your stories of healthcare so we can advocate for better services.

  • Does your GP (& others) know about NICE 2021?
  • Do they understand about PEM?
  • Do you feel confident about the information and advice you have received?

Tell us online, ring the helpline (029 2051 5061) or email jan@wames.org.uk

Don’t forget to tell us which Health Board area (and county) you reside in.

On 16 April 2024 Mark Isherwood MS tabled a written question in the Senedd:

WQ92480 (e)

How many training courses for GPs and health professionals in Wales have been run since the revised myalgic encephalomyelitis/ chronic fatigue syndrome NICE guideline was published in 2021?

Answered by Cabinet Secretary for Health and Social Care, 19/04/2024

Since the revised myalgic encephalomyelitis/chronic fatigue syndrome NICE guideline were published back in 2021, one training course has run in Wales which was attended by 19 delegates. The training was run as a webinar by HEIW in November 2023. The webinar was subsequently published and remains available.

On 16 April 2024 Mark Isherwood MS tabled a written question in the Senedd:

WQ92481 (e)
Have the Welsh Government and local health boards sourced expert myalgic encephalomyelitis/chronic fatigue syndrome training from outside Wales and if so, from where?

Answered by Cabinet Secretary for Health and Social Care, 19/04/2024

Dr Nina Muirhead has presented on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) in the past – however this has not occurred since the pandemic or the publication of the 2021 update by NICE.

Health Education Improvement Wales (HEIW) ran a webinar as part of its Lifestyle Medicine Series on this topic in November 2023.

This training was sourced from within Wales.

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World ME day: Ask UK to be a #GlobalVoiceForME

#World ME day, 12 May – Take action!

 

Together, we are battling a global health crisis – help us let the WHO know

A part of the World ME Alliance we are joining with nations all over the world, asking the people responsible for working with the World Health Organization to become a #GlobalVoiceForME.

In the UK this is Ms Nicky Shipton-Yates
WHO Policy Manager
International Directorate
Department of Health and Social Care

At the World ME Alliance, we estimate there are over 500,000 people with ME in UK.

Join this global effort to send a message to the WHO!

Take these simple steps to send an email to Nicky Shipton-Yates and copy in the World ME Alliance, so we can follow-up on the connections you help us to make!

  1. Copy and paste the below template into a new email
  2. Add your name to the first paragraph, and your contact details at the end
  3. Edit the template to include a little about yourself, and how ME has impacted your life, as a person with ME or an ally.
  4. Remember to be polite.
  5. Copy and paste the recipients email address into the To: field, and remember to include us  at globalvoiceforme@worldmealliance.org as well!
  6. Press send!

Share this article with other people in Wales and the rest of the UK to get more people involved!

Copy and paste your template letter to:

dhsc.publicenquiries@dhsc.gov.uk     globalvoiceforme@worldmealliance.org

Urgent Call for Action: Become a global voice for ME

Dear Ms Nicky Shipton-Yates,

I am [Insert Your Name], a citizen and advocate representing the 500,000 plus people with Myalgic Encephalomyelitis (ME) in the United Kingdom.

Before the COVID-19 pandemic, there were between 17 and 30 million people living with ME worldwide. Now, the World ME Alliance now estimates there are at least 55 million globally, with millions of new cases triggered by COVID-19. Research shows half of those with long COVID meet the criteria for an ME diagnosis.

ME has huge economic implications: most people with ME are unable to work, 25% are housebound or bedbound, and there are substantial costs associated with their care.

As we approach World ME Day 2024 on May 12th, dedicated to raising awareness about ME and its impact, I urge you to join me in becoming a voice for those affected by this debilitating condition.

ME was officially recognized as a neurological disease by the WHO 55 years ago, but still faces alarming challenges. Its severe and incurable nature significantly impacts patients’ quality of life, usually forcing them to stop working and taking part in society. Lack of recognition makes their struggles worse.

The World ME Alliance estimates that the numbers of people living with ME in the United Kingdom have more than doubled since the beginning of the COVID-19 pandemic.

I’m reaching out to ask for your help championing the cause of ME in United Kingdom. It’s crucial we take an active role in supporting those living with this devastating disease.

Please contact the World ME Alliance’s Head of Advocacy and Communications, via globalvoiceforme@worldmealliance.org, to arrange a Zoom meeting and explore how United Kingdom can become a #GlobalVoiceForME.

Your support is pivotal for improving the lives of those affected by ME.

Thank you for your time and consideration on this critical issue.

Yours sincerely,
[Your Full Name] [Your Contact Information]

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No ME/CFS Delivery plan for Wales, say Welsh Government

No Welsh strategy to support ME/CFS service development

 

Following a question in the Senedd and discussions with Welsh Government officials it is now clear that the Welsh Government have rejected WAMES’ request to develop an all-Wales strategy or Delivery Plan to guide service development for ME/CFS in Wales.

Instead, the focus is on supporting Health Boards to develop services as they feel appropriate, as part of their existing Adferiad Long COVID service.

WAMES is very disappointed that all the focus is on rehabilitation services and that it has not been recognised that Health Boards across Wales would benefit from an all-Wales vision and strategy.

WAMES believes that national support and training would reduce the need for each Health Board to ‘reinvent the wheel’ and ensure a common understanding of the nature of ME/CFS, in line with the NICE guideline.

A patient’s journey through the NHS spans diagnosis, education about the illness, self-management support and informed medical care. A national strategy and vision would not remove the ability for Health Boards to address regional issues and needs, but it would remove some of the delays caused by a ‘trial and error’ approach to service development.

WAMES will continue to work with Health Boards to provide the patient and carer perspectiven and be part of the co-production approach that the Welsh Government have called for.

On 16 April 2024 Mark Isherwood MS tabled a written question in the Senedd:

What action will the Welsh Government take in light of the responses to the myalgic encephalomyelitis/chronic fatigue syndrome interim delivery plan, specifically the request from patients for a national strategy to address past stigma and lack of training for professionals?

The Cabinet Secretary for Health and Social Care, Eluned Morgan MS, answered on 23rd April:

Improvements to services for people with ME/CFS in Wales are being driven via our Adferiad (Recovery) programme, which was initially set up to support people with Long Covid.

The My Full Reality interim delivery plan about myalgic encephalomyelitis/chronic fatigue (ME/CFS) was a UK Government initiative. Together with officials from the other devolved governments, we maintained a watching brief about the development of the plan.

Information about the UK Government consultation on the interim delivery plan was circulated in Wales to encourage and enable people, clinicians, and other interested stakeholders to contribute. We are keen to take any learning from the feedback provided but, to date, we have yet to receive the country-specific feedback from the consultation from the UK Government. We have received a response from the Welsh Association of ME & CFS (WAMES), which has been shared with Adferiad-funded service leads in each health boards.

In addition to the £10m initially invested to establish Adferiad-funded services in every health board, £8.3m of recurrent funding has been allocated from March 2023 onwards. I have set out my expectation for this to be used to widen access to people with other long-term conditions whose rehabilitation and recovery needs are similar to people with Long Covid, including people with ME/CFS, and to continue to develop and expand community-focused, multi-disciplinary rehabilitation services, supported by referral pathways into secondary care for those who need it.

All health boards are developing needs-led services that will target recovery and rehabilitation needs focusing on proactive care, self-management, and supported self-management with extensive input from a broad multidisciplinary team. Co-production is an essential factor in service development, and I expect health boards to engage with people with lived experience in this process.

WAMES is grateful to Mark Isherwood MS for all the support he has given over the years to people with ME in Wales.

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Research: ME/CFS & joint hypermobility – a disease subgroup?

Joint hypermobility & ME/CFS

 

Solve ME’s analysis of its You + ME Registry-based population (now Solve Together) sheds light on the complex interplay between joint hypermobility, ME/CFS, and Ehlers Danlos Syndrome.

“Our results showed distinctive clinical characteristics in ME/CFS with joint hypermobility, including a higher likelihood of hereditary hypermobility, reduced health-related quality of life (HRQOL) related to physical functioning and pain, and a range of autonomic, cognitive, headache, gut, and musculoskeletal symptoms.

Sensitivity subgroup analysis underscored the importance of concurrent EDS. In this context, patients with both JH+ ME/CFS and EDS showed more severe symptoms, greater functional limitations, and an increased overall burden of symptoms compared to those with JH+ ME/CFS but without EDS.

These findings emphasize the need for comprehensive clinical assessment and consideration of underlying connective tissue disorders in ME/CFS patients presenting with joint hypermobility. A comprehensive understanding of the clinical features, prognosis, and disease trajectory for these patients could guide cohort selection for research studies and facilitate the discovery of underlying disease mechanisms and targeted therapies.

Further research is needed to understand the implications of joint hypermobility in ME/CFS for research, diagnosis, and clinical care.”

Do people with ME/CFS and joint hypermobility represent a disease subgroup? An analysis using registry data, by Kathleen Mudie, Allison Ramiller, Sadie Whittaker, Leslie E Phillips in Front Neurol 2024 Mar 13:15:1324879. doi: 10.3389/fneur.2024.1324879. eCollection 2024

Research abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, multifaceted disease that affects millions globally. Despite its significant impact, the disease’s etiology remains poorly understood, and symptom heterogeneity poses challenges for diagnosis and treatment. Joint hypermobility, commonly seen in hypermobile Ehlers-Danlos Syndrome (hEDS), has been observed in ME/CFS patients but its prevalence and clinical significance within this population are not well-characterized.

Objective: To compare the characteristics of ME/CFS patients with and without joint hypermobility (JH+ and JH-) as assessed using the Beighton scoring system, and to explore whether JH+ ME/CFS patients exhibit distinct disease characteristics, comorbidities, and health-related quality of life (HRQOL).

Methods: The study used cross-sectional, self-reported data from 815 participants of the You + ME Registry. Participants were categorized as JH+ or JH- based on self-assessed Beighton scores and compared across demographics, comorbidities, family history, and symptoms. HRQOL was assessed using the Short Form-36 RAND survey and Karnofsky Performance Status.

Results: 15.5% (N = 126) of participants were classified as JH+. JH+ participants were more likely to be female, report Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and a family history of EDS. They experienced worse HRQOL, particularly in physical functioning and pain, and a higher number of autonomic, neurocognitive, headache, gut, and musculoskeletal symptoms. Sensitivity analysis suggested that ME/CFS with concurrent JH+ and EDS was associated with more severe symptoms and greater functional impairment.

Conclusion: ME/CFS patients with joint hypermobility, particularly those with EDS, demonstrate distinct clinical characteristics, including more severe symptomatology and reduced HRQOL. These findings highlight the need for comprehensive clinical assessments of ME/CFS patients with joint hypermobility. Understanding these relationships could aid in subgroup identification, improving diagnosis, and informing targeted therapeutic approaches. Further research is warranted to explore these associations and their implications for clinical practice.

Solve ME: New Study Using Solve Real-World Data (RWD) Examines Joint Hypermobility in People with ME/CFS

This research points to the need for comprehensive assessments for ME/CFS patients, potentially leading to quicker and more accurate diagnoses for those with joint hypermobility.

MERUK: Joint Hypermobility and ME/CFS

Limitations of the study include potential selection bias (e.g. individuals with more severe disease may be less likely to participate due to a “burdensome” registry and data collection process), use of optional questionnaires, and self-report data which could be influenced by factors such as recall bias.

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