WAMES AGM 2023: hope for the future

Our annual business meeting on 17th June 2023 celebrated the first signs of hope that services for people with ME/CFS in Wales might be on the horizon. Many times over the years we have wondered if years of raising awareness about ME and calling for appropriate services might ever produce a positive result for our ignored community.

Service development

The unfortunate rise in the post viral illness of long COVID and the long awaited revised NICE guideline means that there is now a more receptive climate in the NHS and an authoritative roadmap for the future.

WAMES has been busy sharing with Welsh Government and Health Boards the needs and experiences of people living with ME, as funding has been allocated and plans are being made to include ME/CFS in health services.

Information sharing

Advocating for services is why WAMES was set up in 2001, but we quickly realised that families affected by ME in Wales also needed information, not just about our illness, but also about general services and ways to influence those services and our society, so we set up a website and newsletter. Our information sharing these days focuses on our news blog, helpline, twitter and Facebook, and we have recently added an e-newsletter and Instagram page.

Our website has been looking increasingly tired and dated so we launched a fundraising campaign which has got off to a good start.

The team

All this has taken place with a dwindling volunteer team. Just imagine what we could do with more help!

• Chair & Campaigns coordinator: Jan Russell
• Acting secretary: Tony Thompson
• Acting treasurer: Liz Chandler
• Youth & Care Officer, Media Contact & Helpline Coordinator: Sylvia Penny
• Volunteering Coordinator: Sharon Williams
• Communications Team volunteers: Jacob; Mia; Michelle; Caitlin

WAMES is different to many ME charities. We don’t exist to support each other and we don’t work for members and provide them with lots of services. Instead, we all work together to improve the quality of life for ALL people affected by ME in Wales. We do this with a small number of people and a limited budget.

All our volunteers have health issues and other commitments but we can all make a valuable contribution when working as a Team and sharing the workload.

Join us at this particularly exciting time for ME in Wales!

We need:

Treasurer; Secretary; WordPress volunteer (to help run the new website); Fundraising volunteers; Remote Office manager; Admin volunteers; Communications volunteers.

Get in touch:  sharon@wames.org.uk   jan@wames.org.uk

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

gets? | WAMES (Working for ME in Wales)

Give donations ‘In lieu of gifts’ 

Why not celebrate your next special occasion by asking your friends and family to lend support to people with ME/CFS?

By asking your friends and family to donate to us instead of giving gifts at a birthday, Christmas, anniversary or wedding, you can enjoy your special day knowing you are making a real difference to the lives of people with ME/CFS.

When adding the suggestion to your gift ‘wish list’ remind the donor to tell the treasurer which occasion they wish to celebrate when they send cheques or transfer money.

Account name:    Welsh Association of ME & CFS
Account Number:  76392081
Sort Code:       09-01-55

Treasurer: Cornerstones, Clinton Road Lane, Penarth, Vale of Glamorgan CF64 3JD

OR set up a fundraising page on a fundraising platform to allow people to donate by debit or credit card.

 “I found it really easy to set up a birthday fundraiser on Facebook.”  Sharon, WAMES Volunteer

Decode ME – the world’s largest  DNA study of ME/CFS

Led by Dr Chris Ponting the study aims to uncover whether the disease is partly genetic and, if so, help pinpoint what causes it.

They need tens of thousands of people to take part from home by taking the questionnaire and providing a saliva sample to study their DNA. You can do both from home.

They need 25,000 DNA samples and even more people to take the questionnaire.

They are also looking for 5,000 DNA samples from people who developed ME/CFS after a Covid-19 infection.

Take part

Over 20,000 people have completed the questionnaire.

Over 10,000 have been asked to provide a DNA sample.

Many more are needed!

People who are not online can also take part:

• Ask for a printed version of the information and questionnaire.
• Ask for help to record your answers over the phone.

Contact info@DecodeME.org.uk or phone 0808 196 8664

More information

Developing curative therapies for Post-COVID and ME/CFS

Prof Carmen Scheibenbogen and German colleagues believe there is a need to explore treatments for ME/CFS and long COVID even though research hasn’t yet uncovered the full cause/s of the conditions and reliable diagnostic tests.

They have produced a list of drugs they believe are worth evaluating but only on strict subgroups of patients, defined by the WHO for PCS and the Canadian criteria for ME/CFS, using a consistent process.

“Our concept of a multipronged clinical trial platform approach addresses the complexity and heterogeneity of PCS and ME/CFS, enabling to test numerous drugs in clinical trials in a harmonized manner accompanied by comprehensive mechanistic studies. Such an approach will pave the way for more rapid development of drugs for PCS and ME/CFS to find therapeutic solutions for specific subgroups and finally all patients.

Further, it will allow the development and identification of precise diagnostic, prognostic and companion biomarkers ultimately leading to targeted and individualized therapies combatting the different disease mechanisms. Finally, the identification of biomarkers predicting response to treatment provides strong evidence for causative pathomechanisms.”

Fighting Post-COVID and ME/CFS – development of curative therapies, by Carmen Scheibenbogen, Judith T Bellmann-Strobl, Cornelia Heindrich, Kirsten Wittke, Elisa Stein, Christiana Franke, Harald Prüss, Hannah Preßler, Marie-Luise Machule, Heinrich Audebert, Carsten Finke5, Hanna G Zimmerman,  Birgit Sawitzki, Christian Meisel, Markus Tölle, Anne Krüger, Anna C Aschenbrenner, Joachim L Schultz, Marc D. Beyer, Markus Ralser, Michael Mülleder, Leif E Sander, Frank Konietschke, Friedemann Paul, Silvia Stojanov, Lisa Bruckert, Dennis M Hedderich, Franziska Knolle, Gabriela Riemekasten, Maria J Vehreschild, Oliver A Cornely, Uta Behrends and Susen Burock, in Frontiers in Medicine, Sec. Infectious Diseases: Pathogenesis and Therapy: Vol 10, 15 Jun 2023 [doi.org/10.3389/fmed.2023.1194754]

Research abstract:

The sequela of COVID-19 include a broad spectrum of symptoms that fall under the umbrella term post-COVID-19 condition or syndrome (PCS). Immune dysregulation, autoimmunity, endothelial dysfunction, viral persistence, and viral reactivation have been identified as potential mechanisms. However, there is heterogeneity in expression of biomarkers, and it is unknown yet whether these distinguish different clinical subgroups of PCS.

There is an overlap of symptoms and pathomechanisms of PCS with postinfectious myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

No curative therapies are available for neither ME/CFS nor PCS. The mechanisms identified so far provide targets for therapeutic interventions. To accelerate the development of therapies, we propose evaluating drugs targeting different mechanisms in clinical trial networks using harmonized diagnostic and outcome criteria and subgrouping patients based on a thorough clinical profiling including a comprehensive diagnostic and biomarker phenotyping.

ME/CFS in Wales

Since the new NICE guideline for the diagnosis and management of ME/CFS was published in October 2021 WAMES has been asking the 7 Health Boards in Wales if they plan to implement the guideline and how they plan to improve care.

Some Health Boards have responded more positively than others, though all claimed to be encouraging staff to use the new NICE guideline. The focus on COVID and lack of funding were often cited as reasons for lack of action in developing management services.

WAMES also approached the Welsh Government asking them to play a part in encouraging service development, and finally in March 2023 the Health Minister, Eluned Morgan, announced some funding to extend long COVID services to ‘people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), fibromyalgia and other post-viral associated conditions’.

The money is welcome, though many would say ‘too little too late’! WAMES has been following what Health Boards are planning to do with that money.

Aneurin Bevan UHB

ABUHB have not announced any plans to develop services and have not responded to WAMES’ enquiries.

Betsi Cadwaladr UHB

BCUHB began talks with WAMES about developing services for ME/CFS long before money became available. Those plans are now being incorporated into plans for a chronic conditions service. There is still an interest amongst some staff members in meeting the needs of people with ME/CFS in line with NICE, including the new lead of the CFS/ME service in Llanfairfechan, and WAMES will continue to engage with the service commissioners to ensure ME/CFS doesn’t get overlooked again.

Cardiff and Vale UHB

Plans are well underway to develop a Long Term Conditions service in the Cardiff and Vale area.  A Co-production group of people interested in many long term conditions has been working on self-management tools such as the development of the Keeping me well website. This is a work in progress and its advice for people with ME/CFS still needs to be improved!

WAMES has been contributing information for the service design process, and planners have been investigating other ME/CFS services for insights and exploring the possibility of medical input to this rehabilitation service.

A soft launch is expected in 2023. As they aim to cater for many conditions with a limited budget and staff, we may find that it will take time to roll out all aspects of an ME friendly service. Hopefully the invitation to WAMES and people with ME to offer constructive criticism will continue.

Cwm Taf Morgannwg UHB

WAMES has met with service designers to explain the needs of people with ME/CFS and promote the NICE guideline. Plans for the Long Term Conditions service are underway and will aim to include services for ME/CFS in line with NICE, although it is uncertain whether medical professionals will be involved. [A GP’s involvement has now been confirmed 14/6/23]

Hywel Dda UHB

Plans to extend the Long COVID service to other conditions are in the early stages but 2 staff members are actively investigating the best way to integrate ME/CFS services into that. They are also talking with WAMES and taking into account the results of engagement with patients in 2014-8.

Powys THB

WAMES has received no information about any plans for an ME-friendly service in Powys and has received no request to engage with patients and carers.

Swansea Bay UHB

SBUB had offered some support previously to some people with ME/CFS through their Rheumatology Occupational Therapy service. They have not revealed any plans to develop further services and have so far not responded to WAMES’ enquiries about it.

You can help!

WAMES will continue to engage with the Health Boards as much as we can. The more information we have about the way the NHS is treating people with ME, the better we can advocate for you.

• Tell us about your recent NHS experiences
• Ask your GP what is recorded about you in your NHS record. Particularly how your illness is coded (Read, SNOMED etc.)
• Ask for a confirmation of an ME/CFS diagnosis if you do not have one. Are they familiar with the NICE guideline?
• Take part in the MEA’s #CountMEin survey of NHS experiences.