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WAMES will be holding our annual business meeting via Teams on Saturday 7 June at 11.30 am. This is the opportunity for members to elect officers, oversee the finances and identify priorities for the coming year.
If you would like to become a member of WAMES and help us keep on course with our mission – to be the voice of people affected by ME in Wales – please contact Jan jan@wames.org.uk.
We will also be happy to discuss any of our volunteering needs if you would like to lend a hand in other ways.
Our Vision is for a Wales where adults and children with ME/CFS and PVFS and their carers are taken seriously and treated with respect, where diagnosis, treatment and services are accessible without a battle.
We were very sorry to hear of the death of Marjorie Crispin on 9th May 2025. We remember with gratitude the many years when she and her husband John organised and guided the Mid Wales ME Group.
She went out of her way to help those in the group, travelling around mid-Wales to lend a hand or a sympathetic ear. We always had a good laugh at the meetings and enjoyed visiting their calm home in the country, with lovely views.
Although the Group no longer exists, the work John and Marjorie began still continues in the group members they nurtured. The mid Wales ME group was a founding member of WAMES and they were very supportive of the national advocacy work.
Marjorie’s husband John died some years ago and she had latterly been living with family in East Sussex, enjoying their company and care. Our sympathies go out to them.
Many will remember Marjorie for the care and understanding she gave them.
We will all remember Marjorie with fondness and gratitutude for the good memories she has left us with.
Jan Russell (ex ME Group Librarian)
Tony Thompson (the tea boy who became John’s successor)
This clinical care guide has been developed by the OMF-supported Medical Education Resource Center (MERC) at Bateman Horne Center, Utah, USA. It aims to offer “a practical path forward—one grounded in clinical expertise, research, and the lived experience of patients.
The Clinical Care Guide condenses decades of in-house clinical experience and hundreds of lectures into clear, actionable guidance. It’s designed for any healthcare provider—regardless of specialty or time constraints—to confidently diagnose, support, and care for patients with ME/CFS, Long COVID, and related conditions.
For too long, people with ME/CFS and Long COVID have faced a healthcare system that wasn’t equipped to meet their needs. Even the most dedicated clinicians often lack the training or tools to support people with these complex, multisystem diseases.
Effective care requires a coordinated, cross-disciplinary approach that includes primary care, specialists, allied health professionals (PT, OT, SLP), behavioral health providers, and caregivers.
Equally vital is the clinician–patient partnership—one grounded in mutual trust, shared decision-making, and respect for lived experience. Together, these collaborations can help reduce the burden of illness, build clinical confidence, and move the field toward more equitable, compassionate care.
This toolkit provides:
The goal of this guide is to equip providers with clear, actionable tools to better support their patients’ care journeys and help improve both daily function and long-term health outcomes.”
Download the Clinical Care Guide
Fact: Many Long COVID patients have symptoms that match ME
Since the COVID-19 pandemic, researchers have found that a large number of people with persistent Long COVID meet the diagnostic criteria for ME. Many experience Post-Exertional Malaise (PEM) – an extreme worsening of symptoms after even minor physical or mental exertion which is the core symptom of ME.
Studies highlight the biological similarities between the two diseases, reinforcing the need for integrated research and clinical approaches for these two conditions as well as other post-infectious syndromes.
Download the ME Factsheet
English Welsh
English easy-formatting (useful for text-speech software)
#WorldMEDay #MyalgicE #MEAwareness
Faith: Mae gan lawer o gleifion COVID Hir symptomau sy’n cyfateb i ME.
Ers y pandemig COVID-19, mae ymchwilwyr wedi canfod bod nifer fawr o bobl â COVID Hir parhaus yn bodloni’r meini prawf diagnostig ar gyfer ME.
Mae llawer yn profi Anhwylder Ôl-Ymarfer (PEM)—gwaethygiad eithafol mewn symptomau ar ôl hyd yn oed fân ymdrech gorfforol neu feddyliol sef PEM, symptom craidd ME.
Mae astudiaethau’n amlygu’r tebygrwydd biolegol rhwng y ddau glefyd, gan atgyfnerthu’r angen am ymchwil integredig a dulliau clinigol ar gyfer y ddau gyflwr hyn yn ogystal â syndromau ôl-heintus eraill.
English easy-formatting (useful for text-speech software)
#WorldMEDay #MyalgicE #MEAwareness
Fact: Doctors can help people manage ME symptoms.
While there is no cure for ME, there are compassionate ways to help patients manage their symptoms, in addition to pacing to prevent Post-Exertional Malaise (PEM).
Treating co-existing conditions and providing medications to address sleep disturbances, pain, and cardiac and neurological issues can offer significant relief. Offering at-home visits, online consultations and palliative care can make a big difference to someone suffering from Severe ME.
Download the ME Factsheet
English Welsh
English easy-formatting (useful for text-speech software)
#WorldMEDay #MyalgicE #MEAwareness
Er nad oes iachâd ar gyfer ME, mae yna ffyrdd tosturiol o helpu cleifion i reoli eu symptomau, yn ogystal â rheoli egni i atal PEM.
Gall trin cyflyrau sy’n cydfodoli a darparu meddyginiaethau i fynd i’r afael ag aflonyddwch cwsg, poen, a materion cardiaidd a niwrolegol gynnig rhyddhad sylweddol.
Gall cynnig ymweliadau yn y cartref, ymgynghoriadau ar-lein a gofal lliniarol wneud gwahaniaeth mawr i rywun sy’n dioddef o ME Difrifol.
English easy-formatting (useful for text-speech software)
#WorldMEDay #MyalgicE #MEAwareness
Fact: ME affects people of all races, genders, ages and socioeconomic backgrounds.
The misconception that ME primarily affects certain groups stems from disparities in diagnosis and healthcare access. While about 75% of those affected are women, ME can affect anyone, regardless of age, gender, race or income. In addition, marginalized communities face more challenges getting diagnosed and treated due to bias in the medical system and lack of awareness.
Download the ME Factsheet
English Welsh
English easy-formatting (useful for text-speech software)
#WorldMEDay #MyalgicE #MEAwareness
Faith: Mae ME yn effeithio ar bobl o bob hil, rhyw, oedran a chefndir economaidd-gymdeithasol
Mae’r camsyniad bod ME yn effeithio’n bennaf ar rai grwpiau yn deillio o wahaniaethau mewn diagnosis a mynediad at ofal iechyd.
Er bod tua 75% o’r rhai yr effeithir arnynt yn fenywod, gall ME effeithio ar unrhyw un, waeth beth fo’u hoedran, rhyw, hil neu incwm
Yn ogystal, mae cymunedau ymylol yn wynebu mwy o heriau wrth gael diagnosis a thriniaeth oherwydd rhagfarn yn y system feddygol a diffyg ymwybyddiaeth.
English easy-formatting (useful for text-speech software)
#WorldMEDay #MyalgicE #MEAwareness
The motion (or request) for a debate in the Senedd was tabled on 24th April 2025 by Adam Price MS. Unfortunately it was not succesful. The Senedd Business Committee chose to allocate the May 14th Member Debate slot to another motion.
‘This does not mean all hope is lost’ says the instigator Rob Messenger!
“There will be other opportunities for our motion to go forward. We’re waiting to hear whether there will be a chance in June before the Senedd goes into Summer Recess between 21 July and 14 September.
What lessons can we learn from this first attempt?
“Thanks to all of you who are continuing to support this effort!”
a) respond to the concerns raised in the Coroner in England’s Prevention of Future Deaths Report, and explain what practical steps they will take to ensure that no patient in Wales will ever be placed in such tragic circumstances as those described in the report;
b) ensure that the Adferiad-funded ME services are making provision appropriate to the needs of patients with severe and very severe ME;
c) bring together an expert group of health professionals and people with lived experience, at a national level, to develop all-Wales guidance and quality standards on ME, including for the most severely affected;
d) make the appointment of an all-Wales specialist consultant for post-infectious chronic conditions – including ME and long COVID – a priority;
e) improve the training on ME for professionals, firstly in the NHS, but also in social services and schools: in particular, raising awareness of the care needs of adults and children with severe and very severe ME; and
f) ensure that health boards truly co-produce their ME and long COVID Adferiad services, taking into account the lived experiences of those suffering at the severest levels and of those caring for them.
Maeve Boothby O’Neill: Prevention of Future Deaths Report
Tabled By
Adam Price Carmarthen East and Dinefwr
Supporters
Cefin Campbell, Mid and West Wales, on: 01/05/2025
Hefin David, Caerphilly on: 30/04/2025
Jane Dodds, Mid and West Wales on: 28/04/2025
Joel James, South Wales Central on: 29/04/2025
Llyr Gruffydd, North Wales on: 01/05/2025
Luke Fletcher, South Wales West on: 30/04/2025
Mark Isherwood, North Wales on: 29/04/2025
Mike Hedges, Swansea East on: 30/04/2025
Rhys ab Owen, South Wales Central on: 02/05/2025
Sioned Williams, South Wales West on: 30/04/2025
Dear (MS name)
I am writing as your constituent to urge you: Please, add your support to Adam Price’s motion for a Member Debate on Severe and Very Severe ME: https://record.senedd.wales/Motion/8884
We hope the motion will be considered by the Business Committee in early June, so your indication of support is needed now.
(Add a brief explanation of why this is important to you personally – your own experience of ME…your experience of NHS provision for ME in Wales)
I would be grateful if you could confirm whether or not you have formally added your support for Motion 8884.
Thank you
Yours sincerely
(Your name, address and telephone number – all required)
