World ME Day – 12 May 2022 – a time to #LearnFromME and #ImplementNICEmecfs

Could 31,000 people in Wales have ME?

The chances are high that you know someone with a post-viral illness. Pre-pandemic an estimated 13,000 people in Wales had Myalgic Encephalomelitis (ME), making ME one of the largest neurological patient communities in the country. COVID-19 could increase that number to 31,000.

Most people with ME remember having a virus. Some were really ill and never fully recovered. Others recovered from the virus after a few weeks, only to collapse again later. Many cannot identify the virus they had, or, like some with COVID, hardly noticed a virus had infected them, but others were tested and given confirmation of a variety of infections e.g. Epstein Barr, Herpes, enteroviruses, Park virus B19 or the previous coronavirus, sars-cov-2.

COVID is also a trigger for ME/CFS. Researchers estimate that 25% of people who experienced ongoing symptoms following the previous COVID outbreak, SARS-CoV, met the criteria for ME.  46% with long COVID today could develop ME, say US researchers. 

According to figures gathered by the ONS:

88,760 people in Wales have long COVID
39,015 people have been ill for 1 year+
11,540 have been ill for 2 years+

If the predictions are correct, up to 18,000 people could have joined the ME community in Wales, bringing the patient population to an estimated 31,000 people.

WAMES has been campaigning for decades for safe, empathetic & equitable healthcare and with the new focus on post-viral illness there is a real opportunity now for NHS Wales to end the ‘health and social care crisis‘ for people with ME/CFS in Wales.

WAMES is therefore asking the NHS and health professionals in Wales not to delay any longer:

• follow the science
• listen to patients and carers
• learn to diagnose ME/CFS: Debilitating fatigue + Post-exertional malaise + Sleep disturbance + Cognitive difficulties
• begin the process of developing a safe, empathetic and equitable healthcare service for people with ME/CFS
• no delay – begin to implement the 2021 NICE ME/CFS guideline today!

#ImplementNICEmecfs

What should health professionals #LearnFromME?

Take Action for #WorldME day!

What should the world #LearnFromME?

WAMES is proudly supporting World ME Day on the 12th of May, only 1 week away. As part of this year’s theme, #LearnFromME, the World ME Alliance has released a series of actions to help you make an impact. We invite people in Wales to join us in taking part.

Are you going to take action and help the world #LearnFromME?

If so, how much time do you have?  60 seconds, 5 minutes or longer?

 60 seconds:

Action 1: Post to social media and use your networks to spread awareness.

Tweet       Post via Facebook      Share via LinkedIn

Action 2: Ask a healthcare professional to take 5 minutes to #LearnFromME. Do you know someone who works in healthcare? Send them a message today asking them to do their bit for World ME Day and read one of the recently produced guidelines. Ask them to visit www.worldmeday.org to find out more.

Action 3: Tag a politician in your social media post about World ME Day. It’s so important to reach those in power and ask them to #LearnFromME on May 12th.

Action 4: Donate to our work here WAMES and the the work of the Alliance here.

5 minutes

Action 1: Create your own custom poster! There are templates with easy instructions on how to add information to produce your own poster. Then just save your poster and share it to social media, with friends and family. Below are some that have been made already.

Create your poster

Action 2: We need to reach the people with power to make difference – that means healthcare professionals and politicians.

Use your custom poster to reach out to someone in power. Send it to a healthcare professional or politician and ask them to take action to #LearnFromME this World ME Day.

Longer:

Action 1: One way we can make a major impact is to tell our stories to a bigger audience. To do this, we need to get into the press. That could be a local newspaper, a university news site, online websites, a radio or tv program. It could have a huge readership or a small one, but it will still be worthwhile.

This action takes more energy and time, but could reach loads of people. Here is a guide to pitching your story to the press. Download and send your first pitch today.    Download the guide and tell your story

Action 2:

You could have a longer term impact by getting involved in an organisation near you. WAMES and all Welsh ME organisations are entirely volunteer run. Reach out to an organisation near you and offer to volunteer today.   Find an organisation to get involved in worldwide.

Actions for Healthcare Professionals

As a healthcare professional it is vital that you understand the principles of care for people with ME.

Two new guidelines have been published in the last year that completely redefine best practice. This World ME Day, we are asking you to take the time to read one of these guidelines.

ME/CFS: diagnosis and management – NICE

ME/CFS: Essentials of Diagnosis and Management – Mayo Clinic Proceedings

We are excited to be participating in all of these actions alongside other organisations and individuals from across the globe.

Find out more about what other organisations are doing around the world at worldmeday.org

Impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: an online cross-sectional survey, by Jui Vyas, Nina Muirhead, Ravinder Singh, Rachel Ephgrave, Andrew Y Finlay in BMJ Open 2022;12:e058128. [doi: 10.1136/bmjopen-2021-058128]

Research abstract:

Objectives

The aim of this study was to assess the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life (QoL) of people with ME/CFS and their relative or partner (family member).

Quality of life, the degree to which an individual is healthy, comfortable, and able to participate in or enjoy life events.        (Britannica)

Design

A patient-partner, multinational, subject-initiated, cross-sectional online survey.
Setting International survey using ME/CFS charities, support groups and social media.

Participants

Participants were self-selected with recruitment via social media. Inclusion criteria were aged 18 years or over and reported diagnosis of ME/CFS by health professional. 1418 people with ME/CFS and their 1418 family members from 30 countries participated in the survey.

Participants with ME/CFS had a mean age of 45.8 years (range 18–81) and were predominantly women (1214 (85.6%) of 1418). Family members had a mean age of 51.9 years (range 18–87) and were predominantly men (women: 504 (35.5%) of 1418). 991 (70%) family members were partners of the people with ME/CFS.

Interventions

EuroQoL-5 Dimension (EQ-5D-3L), completed by people with ME/CFS, and Family Reported Outcome Measure (FROM-16) questionnaire, completed by family members.

EuroQoL-5 measures 5 dimensions: mobility; self-care; usual activities; pain/ discomfort; anxiety/ depression

Results

The mean overall health status on a Visual Analogue Scale for people with ME/CFS was 33.8 (0=worst, 100=best).

A Visual Analogue Scale (VAS) is one of the pain rating scales… often used in epidemiologic and clinical research to measure the intensity or frequency of various symptoms.   (Physiopedia)

People with ME/CFS were most affected by ability to perform usual activities, pain, mobility, self-care and least impacted by anxiety.

For family members, the overall mean FROM-16 score was 17.9 (0=no impact, 32=worst impact), demonstrating a major impact on QoL.

Impact on QoL was significantly correlated between the person with ME/CFS and their family member (p<0.0001). Family members were most impacted emotionally by worry, frustration and sadness and personally by family activities, holidays, sex life and finances.

Conclusions

To the best of our knowledge, this is the largest study on the impact of the QoL of persons with ME/CFS and their family members. While open participation surveys are limited by selection bias, this research has revealed a significant worldwide burden of ME/CFS on the QoL of people with ME/CFS and their family members.

Unanswered questions and future research

Not all people with ME/CFS have a family member or partner to complete the FROM-16. Several individuals wrote to the research team explaining their isolation, difficulty maintaining family relationships and/or lack of empathy of family members. Further research is needed to understand the wider impact of ME/CFS on families and on individuals.

WAMES urgently needs a new website!

Can you help?

Our website is old, but worse still it looks old and needs to be brought up to date so we can communicate more effectively about ME !

WAMES is looking for people to join our small Communications Team to help design, plan content, prepare funding applications and maintain a new website in both Welsh and English.

WordPress volunteer

We currently use the Content Management System (CMS) WordPress for our website and hope to use it for our new site as it is easy for people with minimal skills to keep up to date.

Do you already have some experience of WordPress?
…you could improve the look of our current site, and help us plan the new one.

Do you have other digital skills?
…you could learn about WordPress and practice on our current website, while we plan a new one.

Download role description

Fundraising volunteer

With WordPress skills it is possible to use a standard template to set up simple blogs and websites, but we will need to employ a website designer for a more complex site, which costs MONEY! A fundraising volunteer would undertake a search for funders and help us make an application.

Communications volunteer

Do you have ideas on which design elements are helpful for people with ME or how to improve the content of the website and make it an effective communications tool alongside our social media? Join our Communications Team which meets via Skype and English language email discussions.

Volunteering with WAMES

Our volunteers are a mix of people with and without health conditions, with varying knowledge of ME and number of hours they can offer. They go through an informal selection process for insurance purposes and to ensure they are matched with the most suitable role. They are supported by Sharon, our Volunteer Support Officer and given appropriate training and expenses.

If you would like to support us, but are unable to become a full volunteer, we are also happy to receive occasional help from ‘small steps’ supporters. Just send us your ideas and contributions and our Teams will make the best possible use of them.

Contact Sharon to arrange a chat about how you can help: sharon@wames.org.uk

Are you good with figures?

WAMES is looking for a Treasurer

The Treasurer is critical to our work of raising awareness of ME and influencing service improvement, and will be a key member of the Finance & Fundraising Team.

The role of the treasurer is to:

• ensure that proper financial records and procedures are maintained so we know how much money we have received and how much we are spending
• give the management committee an understanding of WAMES’ financial affairs and advise on budgets, funding needs etc.

Arrange an informal chat with our Volunteering Support Officer: sharon@wames.org.uk                          Download details

Please note:

• Training can be arranged & expenses will be paid
• Most tasks can be carried out from home
• ‘Role share’ is possible
• You don’t have to be knowledgeable about ME
• The posts will give useful experience to add to your CV

WAMES AGM news: 2022 and beyond…

Our annual business meeting on 11th April 2022 was short and to the point as we are working hard calling for the NHS in Wales to #ImplementNICEmecfs and preparing to share key facts for #WorldMEday on what the world can #LearnFromME.

At the heart of our work are People:

• • Chair & Campaigns coordinator: Jan Russell
  • Acting secretary: Tony Thompson
  • Treasurer: Liz Chandler
  • Youth & Care Officer, Media Contact & Helpline Coordinator: Sylvia Penny
  • Volunteering Coordinator: Sharon Williams
  • Communications Team volunteers: Elen Mai; Mia; Michelle
  • Admin volunteers: Lucie; Lizzie
  • Campaigns volunteer: Ruth

WAMES currently has 11 volunteers and benefits from a variety of support from many more people, but there is always room for more! We are pleased to welcome back Liz Chandler temporarily as treasurer, but will need to find a replacement for her soon.

We are currently advertising for: Treasurer; WordPress volunteer (to help plan a new website); Fundraising volunteers; Remote Office manager; Admin volunteers.

Money opens doors for our work:

Our income continues to drop and no longer covers our basic expenditure. In order to continue funding our website and insure our volunteers in 2023 and beyond, we will need to find new ways to ensure a sustainable income.

Watch this space for news about our vital Fundraising campaign!

What drives our work? people affected by ME:

WAMES aim: to give a national voice to people with ME, CFS and PVFS in Wales, their carers and families, in order to improve services, access to services, awareness and support.

Help us…. Make a difference for ME in Wales!

World ME Alliance campaign film – take part

On May 12^th 2022, WAMES is joining with other groups around the world as the World ME Alliance to launch the first World ME Day, and we’re asking “what can the world #LearnFromME?”

The world must listen to people with ME in order to #LearnFromME

Help us make a campaign film by sending short videos describing something you’ve learned from ME, in any language. Your message can be aimed at anyone – friends, family, health professionals, governments, researchers etc.

The videos will be joined together to send a message and show the huge knowledge this community has, and the need to learn from ME.

Examples:

“I learnt that a mild virus can leave someone bedbound with ME for decades.                           Will you #LearnFromME?”

“I learnt that that people with ME have a lower average quality of life than people with cancer, diabetes or heart disease.            Will you LearnFromME?”

Find out how you can take part