Mary describes the torture of a trip to the dentist on top of ME & POTS and knows her coping plan was imperfect, but still believes pain needs to be tackled ASAP and 'I don’t have to educate every new person I meet. I just need to say what I need'.
tinyurl.com/yx89s5z3

The #DecodeME study is inviting applications from researchers 4 access 2 'the world’s largest data set on ME/CFS’. “By allowing other researchers to access this data, we hope to accelerate research towards possible diagnostic tests & treatments for ME/CFS'
tinyurl.com/4zfyycej

The Disability Poverty Campaign Group responds to the Health & Disability Green Paper' which outlines UK gov's proposals for changes to PIP eligibility criteria and assessments. 'The hostile and misleading rhetoric they are opting to use......
tinyurl.com/bddb4t68

.davidtuller is once more crowdfunding online to continue his Trial by Error work for the next 6mths. He explains the history of his 10yr campaign exposing harmful & fraudulent research & claims about ME, ME/CFS & now long Covid. Goal: $65,000 by 31 May
tinyurl.com/5xsrzam6

If you're over 18, live in Bridgend & are eligible to access social services Bridgend Voice & Choice will help you get to the right social service, make sense of yr options & understand yr situation, having someone to speak for you & advocate on yr behalf
tinyurl.com/2tftr6nm

.ME Research UK launches Founders’ Science Writing Award, a competition where early career researchers can show skills in communicating science in a way that is engaging to the general public
Theme: Future of ME/CFS Research, Closes 25 July. Monetary prizes
tinyurl.com/4e5kdvj7

You can listen again to Wales Live from yesterday evening. The segment with Michelle starts at 4m. Our thanks to Michelle who due to PEM/PESE is still badly suffering weeks later. Thanks to @Gemma_Dunstan for her kindness throughout.
tinyurl.com/khzuu9nz

Online event: Bridging Borders – Global Voices from the World ME Alliance. Highlighting the efforts of non-profit organisations dedicated to raising awareness, providing support, and advocating for change within the ME community. May 10th at 5pm BST.
tinyurl.com/bpadmv5y

MERUK’s Spring magazine is now available online & includes 2 newly funded research projects on nanoelectronics & visual sensory processing, Cort Johnson on wave-making UK ME/CFS scientists  an interview with Gemma Samms from the Univ of Edinburgh etc.
tinyurl.com/efh9pyye

North Wales Advice and Advocacy Association will work with residents in Flintshire, Wrexham, Gwynedd and Anglesey to find solutions to social care issues before they become a crisis. 
nwaaa.wales

US ME/CFS researchers say ME should be included in senator Bernie Sander’s call for $10 billion in research grants into long COVID over 10yrs. While symptoms overlap ‘it’s unclear how similar these maladies are at biochemical level. We need to find out'
tinyurl.com/9825kpks

Numbers of GP practices & GPs continue to fall in Wales. The RCGP says: ‘If Welsh Government is to deliver on its long-standing promise to focus on care closer to patients in their local communities, we need to see urgent investment in general practice'
tinyurl.com/yc3cxv9r

UK Parliament Westminster Hall debate on ME/CFS, Wed 1 May 2024, 16.30 - 17.30.
Sajid Javid, MP is their new parliamentary champion and will be leading this debate. Is your MP attending?
tinyurl.com/y9uxsmut

Michelle who has severe ME features in this article. To watch the programme in full tune into BBC Wales Live at 10.50 this evening.
tinyurl.com/4ftwsvek

Listen again on BBC Sounds where Michelle who has severe ME and others with disabilities explain what it is like accessing healthcare as a person with a disability on BBC Breakfast Radio. Segment starts at 17m 45s.
tinyurl.com/2p8259k7

Sophie says she has “a bubbly soul and a tired body”. She gets satisfaction from the little things and being creative. Mini paintings “don't cost too much energy and they quickly give you a feeling of satisfaction”.
tinyurl.com/4tak9t9z

DRUK says UK gov's proposal to “move away from a fixed cash benefit system,” & receive vouchers instead, will mean many Disabled ppl will no longer receive regular benefit payments. This is dangerous & punitive fuelling increases in disability & sickness
tinyurl.com/z4e8r49k

Dr Rob Wüst discusses the key findings of his study in2 PEM in Long COVID, incl the presence of muscular changes, mitochondrial dysfunction & microclots. The dangers of physical activity include the risk of exacerbating symptoms & tissue damage. [44 mins]
tinyurl.com/k8wjkx6y

3 County Independent Professional Advocacy (CIPA) will work with residents in Ceredigion, Carmarthenshire and Pembrokeshire to support you to get your voice heard and make informed choices when seeking to access social care services, free of charge.
tinyurl.com/4hrxjy5r

In a rapid response to a letter in the BMJ 'We need better care for long covid and ME/CFS', Naomi Harvey lists actions clinicians can take to improve medical care for people with ME/CFS, particularly in hospital settings.
tinyurl.com/4ca8rwm9