Take Action! What should the world #LearnFromME?

Posted on 05/05/2022 by wames

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

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ME/CFS has significant impact on Quality of Life for people with ME/CFS & their families

Posted on 05/04/2022 by wames

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.

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WAMES website needs an overhaul – can you help?

Posted on 04/27/2022 by wames

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

 

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Are you good with figures? WAMES treasurer vacancy

Posted on 04/20/2022 by wames

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

 

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WAMES news from the AGM 2022

Posted on 04/19/2022 by wames

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!

 

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WMEA campaign film: Tell us what the world can #LearnFromME?

Posted on 04/14/2022 by wames

World ME Alliance campaign film – take part

On May 12th 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

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What should health professionals #LearnFromME?

Posted on 04/12/2022 by wames

ME is a global health crisis

Health professionals can #LearnFromME

 

Up to 30 million people are living with this disease worldwide, and when we take into account the effect on families, carers and friends too, the impact of this disease cannot be overstated.

 

As part of the World ME Alliance we want to use World ME Day to reach out to health professionals on a personal basis, to help them build an understanding of ME, so we can take another step towards a world that understands ME.

Key facts for health professionals

People with ME have a lower average quality of life than all other diseases they have been compared to, including diabetes, cancers and heart disease.

You can provide support – while you may not be able to cure this disease, that doesn’t mean you can’t do anything.

  • You can accurately diagnose people;
  • you can help manage symptoms;
  • you can provide advice on pacing energy levels;
  • you can ensure people have access to your countries social support systems;
  • and much more.

COVID-19 is causing a spike in new cases of ME.

Guidelines

There are now two high quality guidelines giving the information health professionals need to provide the best possible care. You can read the National Institute for Health and Care Excellence guideline from the UK here, and the Mayo Clinic Proceeding guidance here.

The Mayo Clinic Proceedings guidance lays out four clear steps a health professional should take to support someone with ME. We believe every health professional should know these.

More information

WAMES is proud to be a member of the World ME Alliance

Join WAMES as we prepare for #World ME Day on 12th May 2022

#LearnFromME #ImplementNICEmecfs

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Cognitive dysfunction research: Hippocampal subfields & ME/CFS

Posted on 04/07/2022 by wames

Volumetric differences in hippocampal subfields and associations with clinical measures in myalgic encephalomyelitis/chronic fatigue syndrome, by Kiran Thapaliya, Donald Staines, Sonya Marshall- Gradisnik, Jiasheng Su, Leighton Barnden in Journal of Neuroscience Research March 31, 2022

 

 

“The hippocampus is a small, curved formation in the brain that plays an important role in the limbic system. The hippocampus is involved in the formation of new memories and is also associated with learning and emotions.” 1

Research abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients suffer from a cognitive and memory dysfunction. Because the hippocampus plays a key role in both cognition and memory, we tested for volumetric differences in the subfields of the hippocampus in ME/CFS.

We estimated hippocampal subfield volumes for 25 ME/CFS patients who met Fukuda criteria only (ME/CFS Fukuda), 18 ME/CFS patients who met the stricter ICC criteria (ME/CFS ICC), and 25 healthy controls (HC).

Group comparisons with HC detected extensive differences in subfield volumes in ME/CFS ICC but not in ME/CFS Fukuda. ME/CFS ICC patients had significantly larger volume in the left subiculum head (p<0.001), left presubiculum head (p=0.0020), and left fimbria (p=0.004).

Correlations of hippocampus subfield volumes with clinical measures were stronger in ME/CFS ICC than in ME/CFS Fukuda patients. In ME/CFS Fukuda patients, we detected positive correlations between fatigue and hippocampus subfield volumes and a negative correlation between sleep disturbance score and the right CA1 body volume. In ME/CFS ICC patients, we detected a strong negative relationship between fatigue and left hippocampus tail volume.

Strong negative relationships were also detected between pain and SF36 physical scores and two hippocampal subfield volumes (left: GC-ML-DG head and CA4 head). Our study demonstrated that volumetric differences in hippocampal subfields have strong statistical inference for patients meeting the ME/CFS ICC case definition and confirms hippocampal involvement in the cognitive and memory problems of ME/CFS ICC patients.

Research significance:

Our study found left hippocampal subiculum, presubiculum, and fimbria volumes were significantly larger in ME/CFSICC patients compared with Health Controls, but not for ME/CFSFukuda patients.

Furthermore, this study demonstrated that multiple hippocampal subfield volumes are different in ME/CFSICC patients meeting the strict ICC case definition, and they exhibited strong associations with clinical measures.

Therefore, the strict case definitions are essential in investigation of the pathophysiology of ME/CFS. Subiculum and parasubiculum volumes were larger in ME/CFS in contrast to reductions seen in other neurological disorders.

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Research: Cardiopulmonary, metabolic, & perceptual responses during exercise in ME/CFS

Posted on 04/04/2022 by wames

Cardiopulmonary, metabolic, and perceptual responses during exercise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Multi-site Clinical Assessment of ME/CFS (MCAM) sub-study by Dane B Cook, Stephanie VanRiper, Ryan J Dougherty, Jacob B Lindheimer, Michael J Falvo, Yang Chen, Jin-Mann S Lin, Elizabeth R Unger (The MCAM Study Group) in PLoS One. 2022 Mar 15;17(3):e0265315 [doi.org/10.1371/journal.pone.0265315]

Abstract

Background

Cardiopulmonary exercise testing has demonstrated clinical utility in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, to what extent exercise responses are independent of, or confounded by, aerobic fitness remains unclear.

Purpose

To characterize and compare exercise responses in ME/CFS and controls with and without matching for aerobic fitness.

Methods

As part of the Multi-site Clinical Assessment of ME/CFS (MCAM) study, 403 participants (n = 214 ME/CFS; n = 189 controls), across six ME/CFS clinics, completed ramped cycle ergometry to volitional exhaustion. Metabolic, heart rate (HR), and ratings of perceived exertion (RPE) were measured. Ventilatory equivalent (, ), metrics of ventilatory efficiency, and chronotropic incompetence (CI) were calculated.

Exercise variables were compared using Hedges’ g effect size with 95% confidence intervals. Differences in cardiopulmonary and perceptual features during exercise were analyzed using linear mixed effects models with repeated measures for relative exercise intensity (20–100% peak ). Subgroup analyses were conducted for 198 participants (99 ME/CFS; 99 controls) matched for age (±5 years) and peak  (~1 ml/kg/min-1).

Results

Ninety percent of tests (n = 194 ME/CFS, n = 169 controls) met standard criteria for peak effort. ME/CFS responses during exercise (20–100% peak ) were significantly lower for ventilation, breathing frequency, HR, measures of efficiency, and CI and significantly higher for ,  and RPE (p<0.05adjusted). For the fitness-matched subgroup, differences remained for breathing frequency, , , and RPE (p<0.05adjusted), and higher tidal volumes were identified for ME/CFS (p<0.05adjusted). Exercise responses at the gas exchange threshold, peak, and for measures of ventilatory efficiency (e.g., ) were generally reflective of those seen throughout exercise (i.e., 20–100%).

Conclusion

Compared to fitness-matched controls, cardiopulmonary responses to exercise in ME/CFS are characterized by inefficient exercise ventilation and augmented perception of effort. These data highlight the importance of distinguishing confounding fitness effects to identify responses that may be more specifically associated with ME/CFS.

Excerpt from full Conclusion:

In general, the acute exercise capacity of this cohort of people with ME/CFS was in the low-to-normal range, when considering their GET and peak aerobic capacity values. However, these data do not provide a complete functional picture of the cardiopulmonary system in ME/CFS.

Ventilatory efficiency was found to be low in those with ME/CFS and significantly worse than controls. The observed responses likely reflect adequate oxygen delivery but inadequate oxygen utilization and are suggestive of disease specific adaptations that may be of pathophysiological significance but require more research. These data also highlight the importance of distinguishing fitness effects from those that are primary to the disease. By closely matching our groups on aerobic capacity/exercise time and age, many group differences were eliminated. Importantly, our data suggest that chronotropic incompetence was not present among this large sample of participants with ME/CFS.

When considering physical activity for people with ME/CFS, clinicians face the challenge of helping patients avoid the negative effects of acute exercise (e.g., symptom exacerbation) [71, 72], while moving them towards experiencing the health benefits associated with a more physically active lifestyle [73]. A logical approach is to develop exercise prescriptions which strike a balance between minimizing symptom exacerbation and maximizing function, however, there is limited information on the intensity threshold at which this ideal balance occurs or guidance on how to establish this threshold for individual patients.

It is noteworthy that in other patient care settings for which a substantial literature on exercise prescription already exists, ramped incremental CPET is considered the gold standard for physiologically comprehensive exercise intensity assessment and prescription [74]. Given that over 90% of the present sample was able to provide a valid peak effort during CPET, we conclude that there is sufficient precedent for future work testing whether CPET guided exercise prescription can help address the unique physical activity challenges experienced by people with ME/CFS. Further, we believe that these data will support current recommendations to practitioners to encourage patients with ME/CFS to maintain tolerated levels of activity, to increase activity with caution, and make adjustments to avoid post-exertional malaise.

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ME services in Wales can learn from Long COVID Adferiad programme says Health Minister

Posted on 04/04/2022 by wames

Welsh Government wants Long COVID community model to also treat and support ME, CFS and MS

 

On 31st March 2022 the Health Minister Eluned Morgan announced further funding for the Adferiad programme for Long COVID recovery:

“today I am announcing a further £5 million of Adferiad programme funding to be allocated to Health Boards in 2022/23 to support the continuation of health boards’ long COVID services.”

Again there is no funding announcement for ME services but she is “heartened” by the success of the programme and wants to “apply this knowledge to how we treat other long term conditions like MS, ME and CFS.”

“It is hoped by the end of the next six-month period in July, health boards in Wales will take the opportunity to begin to expand the community model to treat and support people with other long-term conditions which have a similar impact as long COVID, including the likes of Multiple Sclerosis (MS), Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS).  This would help create effective long term intervention services and reduce variation treating people with different conditions and diagnoses.”

WAMES intends to discuss exactly what this might mean with the soon to be appointed (we hope) Welsh Government policy officer for post viral conditions and Health Board representatives. It is not yet clear if any of the LC community services cater for people with PEM/PESE. It is also unclear if GPs and fatigue services have taken on board the NICE guideline alongside the Long COVID guideline. We’d love to hear from patients and carers whether they are seeing any sign of healthcare improving as we continue to ask NHS Wales to #ImplementNICEmecfs

The Adferiad programme covers:

Health Board services:

North Wales: Betsi Cadwaladr

Mid Wales: Powys

West Wales: Hywel Dda    Swansea Bay

South Wales: Aneurin Bevan     Cardiff & Vale     Cwm Taf

See also:

Health Education and Improvement Wales (HEIW) Long Covid Syndrome Resources 

Welsh Government statement: Further £5million investment for long COVID services

In the media:

Deeside.com: Further £5m investment in ‘innovative’ Long-COVID rehabilitation services

Nation.Cymru: Extra funding announced for innovative long-Covid treatment programme

BBC: Long Covid: People turning to opera to overcome illness

Wrexham.com: Extra £5million investment announced for long-covid services in Wales – includes some results of the review of the Adferiad programme.

The Leader: £5m announced to support long covid sufferers

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